@Article{info:doi/10.2196/57834, author="Hou, J. Sharon H. and Henry, Brianna and Drummond, Rachelle and Forbes, Caitlin and Mendon{\c{c}}a, Kyle and Wright, Holly and Rahamatullah, Iqra and Tutelman, R. Perri and Zwicker, Hailey and Stokoe, Mehak and Duong, Jenny and Drake, K. Emily and Erker, Craig and Taccone, S. Michael and Sutherland, Liam and Nathan, Paul and Spavor, Maria and Goddard, Karen and Reynolds, Kathleen and Schulte, M. Fiona S.", title="Co-Designing Priority Components of an mHealth Intervention to Enhance Follow-Up Care in Young Adult Survivors of Childhood Cancer and Health Care Providers: Qualitative Descriptive Study", journal="JMIR Cancer", year="2025", month="Apr", day="25", volume="11", pages="e57834", keywords="mobile health", keywords="mHealth", keywords="pediatric oncology", keywords="cancer survivorship", keywords="qualitative research", keywords="patient-oriented research", keywords="co-design", keywords="intervention development", abstract="Background: Survivors of childhood cancer are at risk of medical, psychological, and social late effects. To screen for their risks, receipt of consistent, cancer-specific follow-up care is crucial. However, <50\% of survivors attend their aftercare, and only 35\% of them recognize that they could have a serious health problem. The use of mobile health (mHealth) is a promising form of intervention to educate, connect, and empower survivors of childhood cancer on the importance of follow-up care. Objective: This study aimed to use co-design to identify the priority components to include in an mHealth intervention with young adult (aged between 18 and 39 years) survivors of childhood cancer and health care providers. Methods: This study was conducted between January and November 2022 in Canada and used patient-oriented research methods. Participants were recruited through local or provincial long-term follow-up clinics, using convenience sampling from patient partners who assisted in recruiting survivors across geographical areas in western, central, and eastern Canada, and social media outreach (X, formally known as Twitter; Facebook; and Instagram). Qualitative descriptive data (focus group interviews) from survivors of childhood cancer and health care providers (individual interviews) were gathered. We analyzed the collected data using reflexive thematic analysis and verified it through member checking techniques through an online community engagement event. Results: We conducted with patient partners 5 online (Zoom) focus groups with 22 survivors of childhood cancer (mean age 29.19, SD 4.78 y). We conducted individual telephone interviews with 7 health care providers. Participants identified five priority areas to be included in an mHealth intervention: (1) connections, (2) education and information, (3) engagement, (4) personalization, and (5) resources. Results were shared with and validated by survivors of childhood cancer, their families, health care providers, and academic researchers as part of a community engagement event. Small and large group discussions were facilitated to allow participants to review and discuss the accuracy of the themes derived regarding the core components to be included in mHealth. A graphic recording artist visually captured key ideas from the event. A subset of the participants also completed a web-based satisfaction survey, and responses indicated that the community engagement event was generally well received. Conclusions: Results from this study have provided the necessary foundation to progress in intervention development. The next step of this multiphased project is to build an innovative and accessible mHealth intervention prototype that is based on the identified core components and is grounded in an established conceptual framework for co-design of mHealth. ", doi="10.2196/57834", url="https://cancer.jmir.org/2025/1/e57834" } @Article{info:doi/10.2196/71684, author="Pang, Yan and He, Honggu and Ng, Ruey-Pyng and Lee, Luan Nicole Kim and Htein, Win Me Me and Zhao, Xiao-Xin and Li, Ying-Hong and Chan, Jiahui Elizabeth and Zhu, Lixia and Liu, Yu Guang and Pikkarainen, Minna and Lim, Swee-Ho", title="Effectiveness of an Innovative Mobile-Based Perioperative Care Program for Women Undergoing Breast Cancer Surgery (iCareBreast): Randomized Controlled Trial", journal="J Med Internet Res", year="2025", month="Apr", day="21", volume="27", pages="e71684", keywords="breast cancer", keywords="digital health", keywords="mHealth", keywords="mobile health", keywords="psychosocial", keywords="randomized controlled trial", keywords="self-efficacy", keywords="mobile phone", abstract="Background: Breast cancer is one of the most prevalent cancers among women and significantly impacts psychological well-being and health-related quality of life (HR-QoL) during the perioperative period. Mobile health interventions offer a promising approach to providing education and psychosocial support, yet their effectiveness in this context remains underexplored. Objective: This study aimed to develop and evaluate the effectiveness of an innovative, mobile-based, perioperative care program for women undergoing breast cancer surgery (iCareBreast). The assessment focused on perioperative self-efficacy, anxiety, depression, fatigue, HR-QoL, and perioperative care satisfaction. Methods: A two-group randomized control trial was conducted at a tertiary hospital in Singapore. The intervention group used the iCareBreast app, offering four main resources: perioperative care guidance, breast cancer and surgery education, psychological support, and social support. The control group received standard hospital care. Participants in the intervention group engaged with the fully automated app daily for 29 days (two weeks before surgery, on the day of surgery, and two weeks after surgery). Data were collected face-to-face or on the web at three time points: baseline, immediately after the intervention (T1; two weeks after surgery), and at a 2.5-month follow-up (T2; three months after surgery). The primary outcome was perioperative care self-efficacy, while secondary outcomes included anxiety, depression, fatigue, HR-QoL, and perioperative care satisfaction. Results: A total of 123 patients with early-stage breast cancer scheduled for breast surgery were enrolled in the study, with 62 patients assigned to the iCareBreast group and 61 patients to the control group. The results showed no significant differences between the groups in the primary outcome---perioperative self-efficacy---at any time point. Baseline scores were similar (P=.80), and while the iCareBreast group showed slightly lower scores at T1 (mean difference [MD] --1.63, 95\% CI --3.43 to 0.18; P=.08) and T2 (MD --1.90, 95\% CI --4.06 to 0.26; P=.09), the differences were not statistically significant. Similarly, secondary outcomes, including anxiety, depression, fatigue, HR-QoL, and perioperative care satisfaction, showed no significant changes between groups (all P>.05). However, the iCareBreast group reported higher perioperative care satisfaction during the postintervention assessment. Satisfaction scores were comparable at T1 (P=.68), while at T2, the iCareBreast group showed a slight increase compared to the control group (MD 0.35, 95\% CI 0.04-0.73; P=.08), though the difference was not statistically significant. Conclusions: The mobile-based psychosocial intervention, although satisfied by users, did not demonstrate significant benefits compared to standard care. This highlights the need to refine the iCareBreast app in future iterations to enhance its effectiveness in addressing the targeted health outcomes. Future mobile health research should prioritize optimizing user engagement strategies and incorporating personalized approaches to better address the perioperative care needs of patients with breast cancer. Trial Registration: ClinicalTrials.gov NCT04172350; https://clinicaltrials.gov/study/NCT04172350 ", doi="10.2196/71684", url="https://www.jmir.org/2025/1/e71684" } @Article{info:doi/10.2196/66812, author="Morena, Nina and Htite, Dimya Elly and Ahisar, Yitzchok and Hayman, Victoria and Rentschler, A. Carrie and Meguerditchian, N. Ari", title="Breast Cancer Vlogs on YouTube: Descriptive and Content Analyses", journal="JMIR Infodemiology", year="2025", month="Mar", day="31", volume="5", pages="e66812", keywords="breast cancer vlog", keywords="YouTube", keywords="social media", keywords="experience", keywords="video", keywords="content analysis", keywords="breast", keywords="cancer", keywords="women", keywords="oncology", keywords="descriptive analysis", abstract="Background: Many women with breast cancer document their experiences in YouTube vlogs, which may serve as peer-to-peer and community support. Objective: This study aimed to determine (1) the forms of content about breast cancer that tend to be discussed in vlogs, (2) the reasons why women choose to vlog their breast cancer experiences, and (3) the potential for breast cancer vlogs to serve as an alternative or complement to peer-to-peer support as well as a site of digital community overall. Methods: YouTube was searched in incognito mode in November 2023 using the search terms ``breast cancer vlog.'' A maximum of 10 videos/creator were included based on viewership and date created. Video characteristics collected included title; length; number of views, likes, comments; and playlist inclusion. Videos were assessed for sponsorship; presence of explanation and discussion on breast cancer; type of content; and themes. Creator characteristics included age, location, and engagement approaches. Descriptive and content analyses were performed to analyze video content and potential areas where peer-to-peer support may be provided. Results: Ninety vlogs by 13 creators were included, all from personal accounts. The mean (SD) video length, number of views, and number of comments were 21.4 (9.1) minutes, 266,780 (534,465), and 1485 (3422), respectively. Of the 90 videos, 35 (39\%) included hashtags, and 11 (12\%) included paid sponsorships. The most common filming location was the home (87/90; 97\%), followed by the hospital (28/90; 31\%) and car (19/90; 21\%). Home vlogs were most often set in the living room (43/90; 44\%), bedroom (32/90; 33\%), or kitchen (20/90; 21\%). Thirty-four of 60 videos (57\%) included treatment visuals and physical findings. Creators addressed motivation for vlogging in 44/90 videos (49\%); the two most common reasons were wanting to build a community and helping others. In 42/90 videos (47\%), creators explicitly expressed emotion. Most common themes were treatment (77/90; 86\%), mental health (73/90; 81\%), adverse effects (65/90; 72\%), appearance (57/90; 63\%), and family relationships (33/90; 37\%). Patient-directed advice was offered in 52/90 videos (58\%), mostly on treatment-related issues. In 51/90 videos (57\%), creators provided explicit treatment definitions. Chemotherapy was discussed in 63/90 videos (70\%); surgery in 52/90 (58\%), primarily mastectomy; radiation in 27/90 (30\%); and general adverse effects in 64/90 (71\%). Twenty-two of 90 videos (24\%) were about a new diagnosis. When mentioned (40/90; 44\%), the most common creator location was the United States. When mentioned (27/90; 30\%), the most common age was 20?29 years. Conclusions: The dedication to building community support by vlog creators, and the personal nature of their storytelling, may make vlogs a potential resource for peer-to-peer support. ", doi="10.2196/66812", url="https://infodemiology.jmir.org/2025/1/e66812" } @Article{info:doi/10.2196/63989, author="Kim, Mi Sun and Kim, Seul Da and Jang, Yoonsung and Kim, Kyoon Min and Yu, Eun-Seung and Han, Hyun Doug and Kim, Jun Hee", title="Evaluating the Effectiveness of a Mobile App for Breast Cancer Self-Management on Self-Efficacy: Nonrandomized Intervention Trial", journal="JMIR Mhealth Uhealth", year="2025", month="Mar", day="26", volume="13", pages="e63989", keywords="breast cancer", keywords="mobile health", keywords="mHealth", keywords="health education", keywords="self-efficacy", keywords="psychological adjustments", keywords="mobile phone", abstract="Background: Numerous mobile apps have been developed for patients with cancer. However, there is still no comprehensive app for patients with breast cancer that integrates evidence-based medical information, psychological support, and schedule management through a multidisciplinary medical approach. Objective: We aimed to investigate whether a mobile app designed to assist in the self-management of patients with breast cancer is feasible and positively affects their self-efficacy and other psychological aspects. Methods: The Cancer Manager (CAMA) app was developed to assist in the self-management of patients with breast cancer and survivors of cancer according to cancer trajectory. Its functionalities include providing evidence-based digitalized information created by experts, managing patients' medication and medical appointment schedules, and providing a delayed question and answer system for patients to query health care professionals. In this nonrandomized intervention trial, we analyzed data from 66 patients with breast cancer, divided into experimental (CAMA: n=34, 52\%) and control (treatment as usual: n=32, 48\%) groups. Group allocation was determined based on the patient's willingness to use the app and access to compatible smartphones. Outcome measures included the Korean version of the Cancer Survivor Self-Efficacy Scale, the Korean version of the Mini-Mental Adjustment to Cancer (K-Mini-MAC) Scale, the World Health Organization Quality of Life Brief Version, Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7 (GAD-7), and Menopause Emotional Symptoms Questionnaire (MESQ). A user satisfaction survey was also conducted. Results: Throughout the intervention period, the CAMA group (vs treatment as usual group) demonstrated significant improvements in the seeking help and support subscale of the Korean version of the Cancer Survivor Self-Efficacy Scale (F1,64=5.09; P=.03), the psychological well-being subscale of the World Health Organization Quality of Life Brief Version (F1,64=5.48; P=.02), the anxious preoccupation subscale (F1,64=5.49; P=.02) and positive attitude subscale (F1,64=5.44; P=.02) of the K-Mini-MAC Scale, PHQ-9 (F1,64=4.83; P=.03), GAD-7 (F1,64=5.48; P=.02), and MESQ (F1,64=4.30; P=.04). Changes in the anxious preoccupation subscale of the K-Mini-MAC Scale scores were positively correlated with changes in the PHQ-9 (r=0.46; P=.007) and GAD-7 (r=0.41; P=.02) scores and negatively correlated with changes in the positive attitude subscale of the K-Mini-MAC Scale scores (r=--0.36; P=.04). Changes in the PHQ-9 scores were positively correlated with changes in the GAD-7 (r=0.66; P<.001) and MESQ (r=0.35; P=.04) scores. The user satisfaction survey offered insights into the CAMA app's positive impact; trust-building outcomes; and opportunities for enhancement, such as the inclusion of communication tools and continued content enrichment. Conclusions: The mobile app for breast cancer self-management, CAMA, was deemed feasible and showed promise in improving the patients' self-efficacy regarding seeking help and support, positive attitude toward cancer, and psychological well-being. In addition, its use might help reduce anxious preoccupation with cancer, depressive mood, anxiety, and menopausal emotional symptoms. Trial Registration: Clinical Research Information Service KCT0007917; https://cris.nih.go.kr/cris/search/detailSearch.do?seq=23348 ", doi="10.2196/63989", url="https://mhealth.jmir.org/2025/1/e63989" } @Article{info:doi/10.2196/67175, author="Murphy, M. Karly and Glock, Rachel and Victorson, David and Reddy, Madhu and Birken, A. Sarah and Salsman, M. John", title="Co-Design of a Depression Self-Management Tool for Adolescent and Young Adult Cancer Survivors: User-Centered Design Approach", journal="JMIR Form Res", year="2025", month="Mar", day="24", volume="9", pages="e67175", keywords="adolescent and young adult", keywords="cancer survivorship", keywords="depressive symptoms", keywords="self-management", keywords="co-design workshops", keywords="user-centered design", keywords="thematic analysis", keywords="intervention tailoring", keywords="digital mental health", keywords="evidence-based intervention", keywords="digital tools", keywords="psychosocial support", abstract="Background: Adolescent and young adult (AYA) cancer survivors are more likely to experience elevated depressive symptoms than older survivors and healthy age-matched peers. Despite the elevated risk of depressive symptoms in AYA cancer survivors and the existence of evidence-based interventions to address depression, it is unclear whether AYA cancer survivors can access support services. Digital tools are a potential solution to overcoming barriers to AYA cancer survivors' unmet needs for psychosocial support, but they have not been tailored to the needs and preferences of this unique population. Objective: This study engaged AYA cancer survivors and their providers in the concept generation and ideation step of the user-centered design process through online co-design workshops. The goal was to generate concepts and ideas for a digital depression self-management tool tailored to AYA cancer survivors. Methods: We conducted 5 co-design workshops---4 with AYA cancer survivors and 1 with providers who serve them. Participants were asked to provide feedback on an existing digital mindfulness course using an ``I like, I wish, I wonder'' framework. Then, participants were asked ``How might we...'' questions focused on brainstorming ideas for how the digital tool might work. Participants brainstormed responses independently and then worked as a group to categorize and expand on their ideas. Co-design workshops were autotranscribed using Webex (Cisco) software. Transcripts underwent thematic analysis with additional context provided by the products created during the workshop. Results: Eight AYA cancer survivors (aged 15-37 years) and 4 providers (2 oncologists and 2 social workers) participated in co-design workshops. We identified 6 themes: barriers to engagement, desired content, preferences for content delivery, preferences for interface, features, and aspects to avoid. Each theme had 2-7 subthemes that we relied upon when making design decisions for the prototype. Conclusions: Co-design workshops provided critical insights that informed the prototype development of a digital depression self-management tool tailored to AYA cancer survivors. Key takeaways that were integrated into prototype design include (1) using stories from other AYA cancer survivors to demonstrate concepts; (2) delivering content in brief lessons; and (3) using encouraging notifications, organizational tools, and reward systems to keep AYA cancer survivors engaged with the tool. Some of the themes identified in this study (eg, desired content and features) are consistent with known strategies for promoting user engagement and co-design work in other cancer survivors. However, this study extended previous research by identifying uniquely relevant strategies for tailoring to AYA cancer survivors, such as delivering content in brief sessions to overcome the time constraints AYA cancer survivors experience, providing opportunities for private expression, and maintaining an encouraging tone throughout the tool. These data were used to inform the prototype development of a digital depression self-management tool tailored to AYA cancer survivors. ", doi="10.2196/67175", url="https://formative.jmir.org/2025/1/e67175", url="http://www.ncbi.nlm.nih.gov/pubmed/40126551" } @Article{info:doi/10.2196/67794, author="Wellman, L. Mariah and Owens, M. Camilla and Holton, E. Avery and Kaphingst, A. Kimberly", title="Examining BRCA Previvors' Social Media Content Creation as a Form of Self and Community Care: Qualitative Interview Study", journal="J Med Internet Res", year="2025", month="Mar", day="3", volume="27", pages="e67794", keywords="BRCA", keywords="breast cancer", keywords="genetic testing", keywords="social media", keywords="breast cancer gene", keywords="content creation", keywords="self care", keywords="community care", keywords="qualitative interview", keywords="qualitative", keywords="interview", keywords="previvors", keywords="cancer previvors", keywords="genetic mutations", keywords="online", keywords="content", keywords="interviews", keywords="thematic analysis", abstract="Background: Genetic testing has become a common way of identifying a woman's risk of developing hereditary breast and ovarian cancer; however, not all medical providers have the necessary information to support patients interested in genetic testing, nor do they always have the proper information for patients once they have been diagnosed. Therefore, many ``previvors''---the name given to those who have tested positive for the BRCA genetic mutation---have taken to social media to inform others about the importance of genetic testing and explain to them how to understand their test results. Historically, those desiring to speak about their medical issues online have sought out structured support groups or chat rooms; however, many previvors today are instead posting on their own personal social media accounts and creating more niche communities. Objective: This study aimed to examine why BRCA previvors are sharing content on their personal social media accounts and how posting online in this way serves a purpose for their larger community. Methods: A total of 16 semistructured interviews were conducted with individuals who posted about their experience being diagnosed with the BRCA genetic mutation and their subsequent treatment on their personal social media accounts, specifically for followers interested in their medical journey. The interviews were recorded, transcribed, and coded by an experienced qualitative researcher and a graduate student using inductive techniques, and a reflexive thematic analysis was applied to the transcripts. Results: The results suggest BRCA previvors want to control the narrative around their personalized medical experiences rather than participating in existing groups or chat rooms. Controlling their own story, rather than adding to existing narratives, gives previvors a sense of control. It also allows them to set boundaries around the types of experiences they have online when sharing their medical journey. Finally, previvors said they feel they are serving the larger BRCA community by each sharing their individual journeys, to hopefully avoid stereotyping and homogenizing the experience of patients with BRCA genetic mutations. Conclusions: Research with the objective of understanding the experiences of BRCA previvors should include exploring how and why they talk about their journeys, especially due to the lack of knowledge BRCA previvors say many of their medical providers have. We suggest further research should examine how other patients with the BRCA genetic mutation, especially racial and ethnic minority patients, are navigating their own content creation, especially considering content moderation policies that social media platforms are continuing to implement that directly impact users' ability to share about their medical experiences. ", doi="10.2196/67794", url="https://www.jmir.org/2025/1/e67794", url="http://www.ncbi.nlm.nih.gov/pubmed/40053732" } @Article{info:doi/10.2196/69621, author="Zhong, Chuhan and Luo, Xian and Tan, Miaoqin and Chi, Jing and Guo, Bingqian and Tang, Jianyao and Guo, Zihan and Deng, Shisi and Zhang, Yujie and Wu, Yanni", title="Digital Health Interventions to Improve Mental Health in Patients With Cancer: Umbrella Review", journal="J Med Internet Res", year="2025", month="Feb", day="21", volume="27", pages="e69621", keywords="digital health care services", keywords="mental health care", keywords="oncology", keywords="digital delivery modality", keywords="umbrella review", keywords="PRISMA", abstract="Background: Mental health plays a key role across the cancer care continuum, from prognosis and active treatment to survivorship and palliative care. Digital health technologies offer an appealing, cost-effective tool to address psychological needs. Objective: This umbrella review aims to summarize and evaluate the available evidence on the efficacy of digital health interventions for improving mental health and psychosocial outcomes for populations with cancer. Methods: Literature searches were conducted in Embase, PsycINFO, PubMed, CINAHL, the Cochrane Library, and Web of Science from their inception to February 4, 2024. Systematic reviews (with or without meta-analysis) investigating the efficacy of digital health interventions for psychosocial variables in patients with cancer were included. Quality was assessed using the Assessing the Methodological Quality of Systematic Reviews-2 tool. Results: In total, 78 systematic reviews were included in this review. Among diverse delivery modalities and types of digital interventions, websites and smartphone apps were the most commonly used. Depression was the most frequently addressed, followed by quality of life, anxiety, fatigue, and distress. The qualities of the reviews ranged from critically low to high. Generally, despite great heterogeneity in the strength and credibility of the evidence, digital health interventions were shown to be effective for mental health in patients with cancer. Conclusions: Taken together, digital health interventions show benefits for patients with cancer in improving mental health. Various gaps were identified, such as little research specifically focusing on older adult patients with cancer, a scarcity of reporting high-precision emotion management, and insufficient attention to other certain mood indicators. Further exploration of studies with standardized and rigorous approaches is required to inform practice. Trial Registration: PROSPERO CRD42024565084; https://tinyurl.com/4cbxjeh9 ", doi="10.2196/69621", url="https://www.jmir.org/2025/1/e69621" } @Article{info:doi/10.2196/60948, author="Wu, Xingyue and Lam, Sing Chun and Hui, Ho Ka and Loong, Ho-fung Herbert and Zhou, Rui Keary and Ngan, Chun-Kit and Cheung, Ting Yin", title="Perceptions in 3.6 Million Web-Based Posts of Online Communities on the Use of Cancer Immunotherapy: Data Mining Using BERTopic", journal="J Med Internet Res", year="2025", month="Feb", day="10", volume="27", pages="e60948", keywords="social media", keywords="cancer", keywords="immunotherapy", keywords="perceptions", keywords="data mining", keywords="oncology", keywords="web-based", keywords="lifestyle", keywords="therapeutic intervention", keywords="leukemia", keywords="lymphoma", keywords="survival", keywords="treatment", keywords="health information", keywords="decision-making", keywords="online community", keywords="machine learning", abstract="Background: Immunotherapy has become a game changer in cancer treatment. The internet has been used by patients as a platform to share personal experiences and seek medical guidance. Despite the increased utilization of immunotherapy in clinical practice, few studies have investigated the perceptions about its use by analyzing social media data. Objective: This study aims to use BERTopic (a topic modeling technique that is an extension of the Bidirectional Encoder Representation from Transformers machine learning model) to explore the perceptions of online cancer communities regarding immunotherapy. Methods: A total of 4.9 million posts were extracted from Facebook, Twitter, Reddit, and 16 online cancer-related forums. The textual data were preprocessed by natural language processing. BERTopic modeling was performed to identify topics from the posts. The effectiveness of isolating topics from the posts was evaluated using 3 metrics: topic diversity, coherence, and quality. Sentiment analysis was performed to determine the polarity of each topic and categorize them as positive or negative. Based on the topics generated through topic modeling, thematic analysis was conducted to identify themes associated with immunotherapy. Results: After data cleaning, 3.6 million posts remained for modeling. The highest overall topic quality achieved by BERTopic was 70.47\% (topic diversity: 87.86\%; topic coherence: 80.21\%). BERTopic generated 14 topics related to the perceptions of immunotherapy. The sentiment score of around 0.3 across the 14 topics suggested generally positive sentiments toward immunotherapy within the online communities. Six themes were identified, primarily covering (1) hopeful prospects offered by immunotherapy, (2) perceived effectiveness of immunotherapy, (3) complementary therapies or self-treatments, (4) financial and mental impact of undergoing immunotherapy, (5) impact on lifestyle and time schedules, and (6) side effects due to treatment. Conclusions: This study provides an overview of the multifaceted considerations essential for the application of immunotherapy as a therapeutic intervention. The topics and themes identified can serve as supporting information to facilitate physician-patient communication and the decision-making process. Furthermore, this study also demonstrates the effectiveness of BERTopic in analyzing large amounts of data to identify perceptions underlying social media and online communities. ", doi="10.2196/60948", url="https://www.jmir.org/2025/1/e60948" } @Article{info:doi/10.2196/63597, author="Thiessen, Maclean and Jewitt, Kellie and Stromberg, Raina and Lamontagne, Marie Janelle and Richardson Tanguay, Genevieve and Albo, Annette and Thurston, Chantale and McMillan, E. Diana", title="Constructing TheKeep.Ca With Thrivers of Cancer in Manitoba, Canada, in Support of Enhancing Patient Engagement: Protocol for a Pragmatic Multimethods Study", journal="JMIR Res Protoc", year="2025", month="Jan", day="29", volume="14", pages="e63597", keywords="patient engagement", keywords="patient empowerment", keywords="translational research", keywords="patient recruitment", keywords="development and research", keywords="protocol", keywords="Manitoba", keywords="Canada", keywords="cancer", keywords="patient advisor", keywords="website", keywords="research platform", keywords="thematic analysis", keywords="semi-structured interview", keywords="online infrastructure", abstract="Background: TheKeep.Ca was built to facilitate engagement with those experiencing cancer in Manitoba, Canada. Constructed between 2020 and 2024 with a group of patient advisors, the website includes information on engagement activities including research participation, the patient advisor role, and how those experiencing cancer can access these Manitoba activities. A link allows visitors to register to be contacted about activities that match their demographics, cancer history, and activity preferences. After TheKeep.Ca was constructed, this protocol was developed to establish TheKeep.Ca as a platform for scientific research focused on optimally engaging those experiencing cancer. Objective: We asked the following questions: (1) What was the patient advisors' experience who participated in developing TheKeep.Ca? (2) What are the baseline characteristics of website traffic and registrants at TheKeep.Ca? (3) How does registering with TheKeep.Ca impact the cancer experience? Methods: The planned launch date for the website and initiation of research activities is January 2025. For objective 1, the active patient advisors (N=6) participating in the website project will be invited to participate in project activities including with responses to a question prompt sheet, semistructured audio-recorded interviews, or both. Responses and interviews will be analyzed using reflexive thematic analysis to understand and inform practices for patient engagement on projects. At the website launch, TheKeep.Ca will become publicly accessible and indexable on internet search engines, but no additional promotional interventions will take place in the initial 6 months resulting in visitors primarily from web search traffic. For objective 2, Google Analytics and website registrant data collected during the first six months will be analyzed to obtain baseline characteristics of website visitors. For objective 3, an online survey will be emailed to registrants six months after the website launch characterizing their website experience, the activities they participated in, and collecting feedback on the website. For objectives 2 and 3, quantitative data will be analyzed using both descriptive and inferential statistics, and qualitative data from open-ended questions will be analyzed using thematic analysis guided by an inductive descriptive semantic approach. Results: This study was approved by the University of Manitoba Health Research Ethics Board on December 12, 2024 (HS26614-H2024L263). Institutional approval from CancerCare Manitoba is pending as of December 23, 2024. Findings from objective 1 are expected to be finalized within the first six months after the website launch. Those from objectives 2 and 3 are expected by the 12-month mark. Reporting will include peer-reviewed journals, conferences, and a lay-language summary on TheKeep.Ca. Conclusions: The research outlined in this protocol will facilitate understanding patient advisors' experience in developing TheKeep.Ca. It will also characterize the website' effectiveness and its impact on the cancer experience, providing a baseline and direction for future research and development. International Registered Report Identifier (IRRID): PRR1-10.2196/63597 ", doi="10.2196/63597", url="https://www.researchprotocols.org/2025/1/e63597" } @Article{info:doi/10.2196/67171, author="Reuther, Christina and von Essen, Louise and Mustafa, Imran Mudassir and Saarij{\"a}rvi, Markus and Woodford, Joanne", title="Engagement With an Internet-Administered, Guided, Low-Intensity Cognitive Behavioral Therapy Intervention for Parents of Children Treated for Cancer: Analysis of Log-Data From the ENGAGE Feasibility Trial", journal="JMIR Form Res", year="2025", month="Jan", day="28", volume="9", pages="e67171", keywords="childhood cancer survivor", keywords="cognitive behavioral therapy", keywords="engagement", keywords="internet-administered intervention", keywords="log-data", keywords="parents", abstract="Background: Parents of children treated for cancer may experience psychological difficulties including depression, anxiety, and posttraumatic stress. Digital interventions, such as internet-administered cognitive behavioral therapy, offer an accessible and flexible means to support parents. However, engagement with and adherence to digital interventions remain a significant challenge, potentially limiting efficacy. Understanding factors influencing user engagement and adherence is crucial for enhancing the acceptability, feasibility, and efficacy of these interventions. We developed an internet-administered, guided, low-intensity cognitive behavioral therapy (LICBT)--based self-help intervention for parents of children treated for cancer, (EJDeR [internetbaserad sj{\"a}lvhj{\"a}lp f{\"o}r f{\"o}r{\"a}ldrar till barn som avslutat en behandling mot cancer or internet-based self-help for parents of children who have completed cancer treatment]). EJDeR included 2 LICBT techniques---behavioral activation and worry management. Subsequently, we conducted the ENGAGE feasibility trial and EJDeR was found to be acceptable and feasible. However, intervention adherence rates were marginally under progression criteria. Objective: This study aimed to (1) describe user engagement with the EJDeR intervention and examine whether (2) sociodemographic characteristics differed between adherers and nonadherers, (3) depression and anxiety scores differed between adherers and nonadherers at baseline, (4) user engagement differed between adherers and nonadherers, and (5) user engagement differed between fathers and mothers. Methods: We performed a secondary analysis of ENGAGE data, including 71 participants. User engagement data were collected through log-data tracking, for example, communication with e-therapists, homework submissions, log-ins, minutes working with EJDeR, and modules completed. Chi-square tests examined differences between adherers and nonadherers and fathers and mothers concerning categorical data. Independent-samples t tests examined differences regarding continuous variables. Results: Module completion rates were higher among those who worked with behavioral activation as their first LICBT module versus worry management. Of the 20 nonadherers who opened the first LICBT module allocated, 30\% (n=6) opened behavioral activation and 70\% (n=14) opened worry management. No significant differences in sociodemographic characteristics were found. Nonadherers who opened behavioral activation as the first LICBT module allocated had a significantly higher level of depression symptoms at baseline than adherers. No other differences in depression and anxiety scores between adherers and nonadherers were found. Minutes working with EJDeR, number of log-ins, days using EJDeR, number of written messages sent to e-therapists, number of written messages sent to participants, and total number of homework exercises submitted were significantly higher among adherers than among nonadherers. There were no significant differences between fathers and mothers regarding user engagement variables. Conclusions: Straightforward techniques, such as behavioral activation, may be well-suited for digital delivery, and more complex techniques, such as worry management, may require modifications to improve user engagement. User engagement was measured behaviorally, for example, through log-data tracking, and future research should measure emotional and cognitive components of engagement. Trial Registration: ISRCTN Registry 57233429; https://doi.org/10.1186/ISRCTN57233429 ", doi="10.2196/67171", url="https://formative.jmir.org/2025/1/e67171" } @Article{info:doi/10.2196/57715, author="Fong, Allan and Boxley, Christian and Schubel, Laura and Gallagher, Christopher and AuBuchon, Katarina and Arem, Hannah", title="Identifying Complex Scheduling Patterns Among Patients With Cancer With Transportation and Housing Needs: Feasibility Pilot Study", journal="JMIR Cancer", year="2025", month="Jan", day="17", volume="11", pages="e57715", keywords="patient scheduling", keywords="scheduling complexities", keywords="temporal data mining", keywords="dataset", keywords="breast cancer", keywords="social determinant of health", keywords="oncology", keywords="metastasis", keywords="cancer patient", keywords="social support", keywords="community health worker", keywords="housing need", keywords="care", keywords="transportation", keywords="algorithm", abstract="Background: Patients with cancer frequently encounter complex treatment pathways, often characterized by challenges with coordinating and scheduling appointments at various specialty services and locations. Identifying patients who might benefit from scheduling and social support from community health workers or patient navigators is largely determined on a case-by-case basis and is resource intensive. Objective: This study aims to propose a novel algorithm to use scheduling data to identify complex scheduling patterns among patients with transportation and housing needs. Methods: We present a novel algorithm to calculate scheduling complexity from patient scheduling data. We define patient scheduling complexity as an aggregation of sequence, resolution, and facility components. Schedule sequence complexity is the degree to which appointments are scheduled and arrived to in a nonchronological order. Resolution complexity is the degree of no shows or canceled appointments. Location complexity reflects the proportion of appointment dates at 2 or more different locations. Schedule complexity captures deviations from chronological order, unresolved appointments, and coordination across multiple locations. We apply the scheduling complexity algorithm to scheduling data from 38 patients with breast cancer enrolled in a 6-month comorbidity management intervention at an urban hospital in the Washington, DC area that serves low-income patients. We compare the scheduling complexity metric with count-based metrics: arrived ratio, rescheduled ratio, canceled ratio, and no-show ratio. We defined an aggregate count-based adjustment metric as the harmonic mean of rescheduled ratio, canceled ratio, and no-show ratio. A low count-based adjustment metric would indicate that a patient has fewer disruptions or changes in their appointment scheduling. Results: The patients had a median of 88 unique appointments (IQR 60.3), 62 arrived appointments (IQR 47.8), 13 rescheduled appointments (IQR 13.5), 9 canceled appointments (IQR 10), and 1.5 missed appointments (IQR 5). There was no statistically significant difference in count-based adjustments and scheduling complexity bins ($\chi$24=6.296, P=.18). In total, 5 patients exhibited high scheduling complexity with low count-based adjustments. A total of 2 patients exhibited high count-based adjustments with low scheduling complexity. Out of the 15 patients that indicated transportation or housing insecurity issues in conversations with community health workers, 86.7\% (13/15) patients were identified as medium or high scheduling complexity while 60\% (9/15) were identified as medium or high count-based adjustments. Conclusions: Scheduling complexity identifies patients with complex but nonchronological scheduling behaviors who would be missed by traditional count-based metrics. This study shows a potential link between transportation and housing needs with schedule complexity. Scheduling complexity can complement count-based metrics when identifying patients who might need additional care coordination support especially as it relates to transportation and housing needs. Trial Registration: ClinicalTrials.gov NCT04836221; https://clinicaltrials.gov/study/NCT04836221 ", doi="10.2196/57715", url="https://cancer.jmir.org/2025/1/e57715" } @Article{info:doi/10.2196/54154, author="Komariah, Maria and Maulana, Sidik and Amirah, Shakira and Platini, Hesti and Rahayuwati, Laili and Yusuf, Ah and Firdaus, Hasymi Mohd Khairul Zul", title="Benefits of Remote-Based Mindfulness on Physical Symptom Outcomes in Cancer Survivors: Systematic Review and Meta-Analysis", journal="JMIR Cancer", year="2025", month="Jan", day="16", volume="11", pages="e54154", keywords="cancer", keywords="physical symptoms", keywords="mindfulness", keywords="remote-based intervention", keywords="quality of life", abstract="Background: Many cancer survivors experience a wide range of symptoms closely linked to psychological problems, highlighting the need for psychological treatment, one of the most popular being mindfulness. The use of the internet has greatly increased in the last decade, and has encouraged the use of remote-based interventions to help people living with cancer access treatment remotely via devices. Objective: The primary aim of this study was to explore the efficacy of internet-based mindfulness interventions on the physical symptoms of people living with cancer, where physical symptoms are defined as distressing somatic experiences (eg fatigue, insomnia, and pain) regardless of the underlying cause. The secondary aim was to investigate interventions for the quality of life (QoL). Methods: This study followed the Preferred Reporting Items for Systematic Review and Meta-analysis (PRISMA) guidelines. Relevant articles were systematically searched using electronic databases, namely Scopus, Medline through PubMed, Cumulated Index in Nursing and Allied Health Literature (CINAHL) through EBSCOhost, and Cochrane Central Database. Randomized controlled and pilot trials involving adults and/or older adults with cancer and using remote-based mindfulness interventions compared to usual care were included. The quality of the trials included in this study was assessed using the revised Cochrane risk of bias, version 2.0. This study estimated the standardized mean difference (SMD) and mean difference (MD) with 95\% CI. The I2 test was used to identify potential causes of heterogeneity. Publication bias was assessed using contour-enhanced funnel plots and the Egger linear regression test to reveal a small study effect. Results: The initial search yielded 1985 records, of which 13 studies were ultimately included. After treatment, remote-based mindfulness significantly reduced fatigue (SMD ?0.94; 95\% CI: ?1.56 to ?0.33; P=.002), sleep disturbance (SMD ?0.36; 95\% CI: ?0.60 to ?0.12; P=.004), and improved physical function (SMD .25; 95\% CI: 0.09 to 0.41; P=.002) compared to that observed before treatment. However, compared with usual care, remote-based mindfulness showed a statistically significant reduction only in sleep disturbance (SMD: ?0.37; 95\% CI: ?0.58 to ?0.16; P=.0006) after treatment. Moreover, remote-based mindfulness was not statistically significant in reducing pain both within and between groups. Conclusions: Remote-based mindfulness shows promise in reducing sleep disturbances; however, its impact on fatigue, pain, and physical function may be limited. ", doi="10.2196/54154", url="https://cancer.jmir.org/2025/1/e54154" } @Article{info:doi/10.2196/59625, author="Huijgens, Fiorella and Kwakman, Pascale and Hillen, Marij and van Weert, Julia and Jaspers, Monique and Smets, Ellen and Linn, Annemiek", title="How Patients With Cancer Use the Internet to Search for Health Information: Scenario-Based Think-Aloud Study", journal="JMIR Infodemiology", year="2025", month="Jan", day="16", volume="5", pages="e59625", keywords="web-based health information seeking", keywords="think aloud", keywords="scenario based", keywords="cancer", keywords="patient evaluation", keywords="information seeking", keywords="web-based information", keywords="health information", keywords="internet", keywords="pattern", keywords="motivation", keywords="cognitive", keywords="emotional", keywords="response", keywords="patient", keywords="survivor", keywords="caregiver", keywords="interview", keywords="scenario", keywords="women", keywords="men", abstract="Background: Patients with cancer increasingly use the internet to seek health information. However, thus far, research treats web-based health information seeking (WHIS) behavior in a rather dichotomous manner (ie, approaching or avoiding) and fails to capture the dynamic nature and evolving motivations that patients experience when engaging in WHIS throughout their disease trajectory. Insights can be used to support effective patient-provider communication about WHIS and can lead to better designed web-based health platforms. Objective: This study explored patterns of motivations and emotions behind the web-based information seeking of patients with cancer at various stages of their disease trajectory, as well as the cognitive and emotional responses evoked by WHIS via a scenario-based, think-aloud approach. Methods: In total, 15 analog patients were recruited, representing patients with cancer, survivors, and informal caregivers. Imagining themselves in 3 scenarios---prediagnosis phase (5/15, 33\%), treatment phase (5/15, 33\%), and survivor phase (5/15, 33\%)---patients were asked to search for web-based health information while being prompted to verbalize their thoughts. In total, 2 researchers independently coded the sessions, categorizing the codes into broader themes to comprehend analog patients' experiences during WHIS. Results: Overarching motives for WHIS included reducing uncertainty, seeking reassurance, and gaining empowerment. At the beginning of the disease trajectory, patients mainly showed cognitive needs, whereas this shifted more toward affective needs in the subsequent disease stages. Analog patients' WHIS approaches varied from exploratory to focused or a combination of both. They adapted their search strategy when faced with challenging cognitive or emotional content. WHIS triggered diverse emotions, fluctuating throughout the search. Complex, confrontational, and unexpected information mainly induced negative emotions. Conclusions: This study provides valuable insights into the motivations of patients with cancer underlying WHIS and the emotions experienced at various stages of the disease trajectory. Understanding patients' search patterns is pivotal in optimizing web-based health platforms to cater to specific needs. In addition, these findings can guide clinicians in accommodating patients' specific needs and directing patients toward reliable sources of web-based health information. ", doi="10.2196/59625", url="https://infodemiology.jmir.org/2025/1/e59625" } @Article{info:doi/10.2196/53969, author="Hamid, Fahmida and Roy, Tania", title="Unveiling Sociocultural Barriers to Breast Cancer Awareness Among the South Asian Population: Case Study of Bangladesh and West Bengal, India", journal="JMIR Hum Factors", year="2025", month="Jan", day="10", volume="12", pages="e53969", keywords="Bangladesh", keywords="West Bengal", keywords="India", keywords="Asia", keywords="breast cancer", keywords="awareness", keywords="early detection", keywords="screening", keywords="sociocultural barriers", keywords="health knowledge", keywords="cultural", keywords="stigma", keywords="social media", keywords="socioeconomic", abstract="Background: Bangladesh and West Bengal, India, are 2 densely populated South Asian neighboring regions with many socioeconomic and cultural similarities. In dealing with breast cancer (BC)--related issues, statistics show that people from these regions are having similar problems and fates. According to the Global Cancer Statistics 2020 and 2012 reports, for BC (particularly female BC), the age-standardized incidence rate is approximately 22 to 25 per 100,000 people, and the age-standardized mortality rate is approximately 11 to 13 per 100,000 for these areas. In Bangladesh, approximately 90\% of patients are at stages III or IV, compared with 60\% in India. For the broader South Asian population, this figure is 16\%, while it is 11\% in the United States and the United Kingdom.?These statistics highlight the need for an urgent investigation into the reasons behind these regions' late diagnoses and treatment. Objective: Early detection is essential for managing BC and reducing its impact on individuals. However, raising awareness in diverse societies is challenging due to differing cultural norms and socioeconomic conditions. We aimed to interview residents to identify barriers to BC awareness in specific regions. Methods: We conducted semistructured interviews with 17 participants from West Bengal and Bangladesh through Zoom (Zoom Video Communications). These were later transcribed and translated into English for qualitative data analysis. All our participants were older than 18 years, primarily identified as female, and most were married. Results: We have identified 20 significant barriers to effective BC care across 5 levels---individual, family, local society, health care system, and country or region. Key obstacles include neglect of early symptoms, reluctance to communicate, societal stigma, financial fears, uncertainty about treatment costs, inadequate mental health support, and lack of comprehensive health insurance. To address these issues, we recommend context-specific solutions such as integrating BC education into middle and high-school curricula, providing updates through media channels like talk shows and podcasts, promoting family health budgeting, enhancing communication at cultural events and religious gatherings, offering installment payment plans from health care providers, encouraging regular self-examination, and organizing statewide awareness campaigns. In addition, social media can be a powerful tool for raising mass awareness while respecting cultural and socioeconomic norms. Conclusions: Fighting BC or any fatal disease is challenging and requires support from various dimensions. However, studies show?that raising mass awareness is crucial for the?early detection of BC. By adopting a sensitive and well-informed approach, we aim to improve the early detection of BC and help reduce its impact on South Asian communities. ", doi="10.2196/53969", url="https://humanfactors.jmir.org/2025/1/e53969" } @Article{info:doi/10.2196/55564, author="Huang, Guohong and Wu, Rongrong and Xu, Xiuzhi and Song, Yongxia and Zheng, Rong and Chen, Xi and Hong, Jingfang", title="Effect of eHealth Interventions on Body Image of Patients With Cancer: Systematic Review", journal="J Med Internet Res", year="2025", month="Jan", day="9", volume="27", pages="e55564", keywords="body image", keywords="cancer", keywords="eHealth", keywords="systematic review", keywords="quality of life", keywords="physical symptom", keywords="emotional distress", keywords="review", keywords="mobile phone", abstract="Background: Body image issues are prevalent among individuals diagnosed with cancer, leading to detrimental effects on their physical and psychological recovery. eHealth has emerged as a promising approach for enhancing the body image of patients with cancer. Objective: The purpose of this study was to evaluate the effectiveness of eHealth interventions on body image and other health outcomes (quality of life, physical symptoms, and emotional distress) among patients with cancer. In addition, the acceptability, engagement, and challenges of eHealth interventions were also assessed. Methods: A total of 11 databases were searched, encompassing PubMed; Embase; Web of Science; MEDLINE (via Ovid); Scopus; the Cochrane Library; CINAHL (via EBSCO); OpenGrey; and 3 prominent Chinese repositories: China National Knowledge Infrastructure, China Wanfang Database, and China VIP Database. The search dates were from the inception of the database to September 25, 2024. The inclusion criteria for this study encompassed research that used randomized controlled trials (RCTs) and quasi-experiments (QEs) to examine the effectiveness of eHealth interventions for patients with cancer. The methodological quality of RCTs and QEs was evaluated using the Cochrane risk of bias tool and the Joanna Briggs Institute Critical Evaluation Checklist, respectively. The review adhered to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines and was registered with PROSPERO. Results: There were 3548 studies reviewed, and 7 studies were selected. Three studies were RCTs and 4 were QEs, involving a total of 512 patients. Evidence of efficacy for eHealth interventions targeting body image and other health outcomes (physical symptoms and emotional distress) was mixed. Nevertheless, our findings indicate that there was no notable enhancement in quality of life resulting from eHealth interventions. A total of 5/7 (71\%) studies reported the acceptability of eHealth interventions among patients with cancer, and patients perceived eHealth interventions as acceptable. However, the difficulty of operating the software, determination of the most effective course of treatment, and time constraints emerged as the primary challenges associated with electronic interventions. Conclusions: The implementation of eHealth interventions has the potential to enhance body image, physical symptoms, and emotional distress in patients with cancer. Researchers should undertake more rigorous experiments in the future to elucidate the effectiveness of eHealth and address pertinent concerns. ", doi="10.2196/55564", url="https://www.jmir.org/2025/1/e55564" } @Article{info:doi/10.2196/55300, author="Peerawong, Thanarpan and Phenwan, Tharin and Makita, Meiko and Supanichwatana, Sojirat and Puttarak, Panupong and Siammai, Naowanit and Sunthorn, Prakaidao", title="Evaluating Online Cannabis Health Information for Thai Breast Cancer Survivors Using the Quality Evaluation Scoring Tool (QUEST): Mixed Method Study", journal="JMIR Cancer", year="2024", month="Dec", day="24", volume="10", pages="e55300", keywords="cannabis", keywords="medical cannabis", keywords="Thailand", keywords="critical discourse analysis", keywords="mixed method study", keywords="breast cancer", keywords="digital literacy", keywords="legislation", keywords="health literacy", abstract="Background: Following medical cannabis legalization in Thailand in 2019, more people are seeking medical cannabis--related information, including women living with breast cancer. The extent to which they access cannabis-related information from internet sources and social media platforms and the quality of such content are relatively unknown and need further evaluation. Objective: This study aims to analyze the factors determining cannabis-related content quality for breast cancer care from internet sources and on social media platforms and examine the characteristics of such content accessed and consumed by Thai breast cancer survivors. Methods: A mixed methods study was conducted between January 2021 and May 2022, involving a breast cancer survivor support group. The group identified medical cannabis--related content from frequently accessed internet sources and social media platforms. The contents were categorized based on content creators, platforms, content category, and upload dates. Four researchers used the Quality Evaluation Scoring Tool (QUEST) to assess content quality, with scores ranging from 0 to 28. Contents were expert-rated as either high or poor. The QUEST interobserver reliability was analyzed. Receiver-operating characteristic curve analysis with the Youden index was used to determine the QUEST score cut-off point. Statistical significance was set at P<.05. Fairclough Critical Discourse Analysis was undertaken to examine the underlying discourses around poor-quality content. Results: Sixty-two Thai-language cannabis-related items were evaluated. The content sources were categorized as follows: news channels (21/62, 34\%), government sources (16/62, 26\%), health care providers (12/62, 19\%), and alternative medicine providers (12/62, 19\%). Most of the contents (30/62, 48\%) were uploaded to YouTube, whereas 31\% (19/62) appeared on websites and Facebook. Forty of 62 content items (64\%) were news-related and generic cannabis advertisements while 8 of 62 (13\%) content items had no identifiable date. The interobserver QUEST score correlation was 0.86 (P<.001). The mean QUEST score was 12.1 (SD 7.6). Contents were considered ``high'' when the expert rating was >3. With a QUEST score of 15 as the threshold, the sensitivity and specificity for differentiating between high and poor content quality were 81\% and 98\%, respectively. Content creation was the only significant factor between high- and poor-quality content. Poor-quality contents were primarily created by alternative medicine providers and news channels. Two discourses were identified: advocacy for cannabis use normalization and cannabis romanticization as a panacea. These discourses overly normalize and romanticize the use of cannabis, focusing on indications and instructions for cannabis use, and medical cannabis promotion, while neglecting discussions on cannabis contraindications and potential side effects. Conclusions: The varying quality of medical cannabis--related information on internet sources and social media platforms accessed and shared by Thai breast cancer survivors is an issue of concern. Given that content creators are the sole predictive factors of high content quality, future studies should examine a wider range of cannabis-related sources accessible to both the public and patients to gain a more comprehensive understanding of the issue. ", doi="10.2196/55300", url="https://cancer.jmir.org/2024/1/e55300" } @Article{info:doi/10.2196/48627, author="Lazard, J. Allison and Vereen, N. Rhyan and Zhou, Jieni and Nichols, B. Hazel and Pulido, Marlyn and Swift, Catherine and Dasgupta, Nabarun and Fredrickson, L. Barbara", title="Designing Positive Psychology Interventions for Social Media: Cross-Sectional Web-Based Experiment With Young Adults With Cancer", journal="JMIR Cancer", year="2024", month="Dec", day="20", volume="10", pages="e48627", keywords="young adult", keywords="cancer survivors", keywords="social media", keywords="positive psychology", keywords="acceptability", keywords="feasibility", keywords="youth", keywords="cancer", keywords="psychosocial", keywords="self-efficacy", keywords="social connection", keywords="positive emotion", keywords="emotion", keywords="social engagement", abstract="Background: Young adults (ages 18?39 years) with cancer face unique risks for negative psychosocial outcomes. These risks could be lessened with positive psychology interventions adapted for social media if intervention messages encourage intentions to do the activities and positive message reactions and if young adults with cancer perceive few downsides. Objective: This study aimed to assess whether social media messages from evidence-based positive psychology interventions encouraged intentions to do the intervention activities and intended positive message reactions, overall and among sociodemographic or cancer characteristic subgroups. We also aimed to identify perceived downsides of the activity that would negatively impact the interventions' feasibility. Methods: Young adults (ages 18?39 years, cancer diagnosis ages 15?39 years) were randomized to a between-persons web-based experiment. Participants viewed a social media message with social context cues (vs not) for 1 of 2 types of intervention (acts of kindness vs social connectedness). Participants reported intentions to do the activity, along with their perceived social presence in the message (how much they felt the sense of others) and forecasted positivity resonance (whether they would experience socially connected positive emotions when doing the activity), with 5-point items. Participants also reported their self-efficacy (how certain they can do the intervention activity) with a 0?100 item and potential downsides of the activity categorically. Results: More than 4 out of 5 young adults with cancer (N=396) reported they ``somewhat'' (coded as 3) to ``extremely'' (5) intended to do the intervention activity (336/396, 84.8\%; mean ranged from 3.4?3.6, SD 0.9-1.0), perceived social presence in the messages (350/396, 88.4\%; mean 3.8, SD 0.7), and forecasted positivity resonance (349/396, 88.1\%; mean 3.8?3.9, SD 0.8). Participants reported having self-efficacy to complete the activity (mean 70.7\% of possible 100\%, SD 15.4\%?17.2\%). Most (320/396, 80.8\%) did not think of the downsides of the interventions. Messages with social context cues (vs not) and both intervention types were rated similarly (all P>.05). Black young adults reported lower intentions, perceived social presence, and forecasted positivity resonance than White young adults (all P<.001). Participants in active treatment (vs completed) reported greater intentions to do the activities (P<.001). Conclusions: Positive psychology intervention messages adapted for social media were perceived as acceptable and feasible among young adults with cancer. The social media--based messages encouraged increasing one's social connectedness and performing acts of kindness. Young adults with cancer also predicted they would have feelings of positive social engagement (positivity resonance) when doing the interventions---the key ingredient for experiencing the health benefits of these activities. This study provides promising evidence for the development of age-appropriate, highly scalable interventions to improve psychosocial health among young adults with cancer. ", doi="10.2196/48627", url="https://cancer.jmir.org/2024/1/e48627" } @Article{info:doi/10.2196/63006, author="Ko, Eunjeong and Shamsalizadeh, Neda and Lee, Jaehoon and Ni, Ping", title="Ethical Dilemmas Among Oncology Nurses in China: Cross-Sectional Study", journal="Asian Pac Isl Nurs J", year="2024", month="Dec", day="13", volume="8", pages="e63006", keywords="prognosis-related communication", keywords="ethical dilemmas", keywords="oncology", keywords="ethics", keywords="China", keywords="beliefs", keywords="nursing", keywords="cultural values", keywords="prognosis", abstract="Background: Effective communication about cancer prognosis is imperative for enhancing the quality of end-of-life care and improving patient well-being. This practice is sensitive and is heavily influenced by cultural values, beliefs, and norms, which can lead to ethical dilemmas. Despite their significance, ethical challenges in nursing related to prognosis communication are understudied in China. Objective: This study aimed to examine the ethical dilemmas relating to cancer prognosis communication and their associated factors. Methods: A cross-sectional design was employed to survey 373 oncology nurses in mainland China. Data were collected on ethical dilemmas, attitudes, barriers, experiences with prognosis communication, sociodemographics, and practice-related information. Ordinary least squares regressions were used to identify factors contributing to ethical dilemmas. Results: Participants reported a moderate level of ethical dilemmas in prognostic communication (mean 13.5, SD 3.42; range 5?20). Significant predictors of these dilemmas included perceived barriers (P<.001), experiences with prognosis communication (P<.001), and years of work experience (P=.002). Nurses who perceived greater communication barriers, had more negative experiences with prognosis communication, and had less work experience were more likely to encounter ethical dilemmas in prognosis-related communication. Conclusions: Chinese oncology nurses frequently encounter ethical dilemmas, as well as barriers, in communicating cancer prognoses. This study's findings emphasize the importance of culturally tailored communication training. Collaborative interprofessional training, particularly through physician-nurse partnerships, can perhaps enhance the proficiency of cancer prognosis-related communication. ", doi="10.2196/63006", url="https://apinj.jmir.org/2024/1/e63006" } @Article{info:doi/10.2196/65619, author="Semple, Jane Cherith and O'Neill, Carla and Sheehan, Sarah and McCance, Tanya and Drury, Amanda and Hanna, R. Jeffrey", title="An e-Learning Intervention for Professionals to Promote Family-Centered Cancer Care When a Significant Caregiver for Children Is at End of Life: Mixed Methods Evaluation Study", journal="J Med Internet Res", year="2024", month="Dec", day="10", volume="26", pages="e65619", keywords="e-learning", keywords="intervention evaluation", keywords="mixed methods", keywords="end-of-life care", keywords="educational intervention", keywords="professionals", keywords="self-efficacy", keywords="cancer", keywords="family-centered care", keywords="cancer care", keywords="person-based approach", keywords="qualitative", keywords="evidence-based", keywords="parent", keywords="adverse outcome", keywords="eHealth", abstract="Background: Families are often unsure how best to prepare dependent children for the death of a significant caregiver with a poor cancer prognosis and seek guidance and support from health care teams. Health and social care professionals (hereafter referred to as professionals) often lack educational opportunities to gain the desired knowledge, skills, and confidence to provide family-centered supportive cancer care. e-Learning has positively impacted access and reach, improving educational opportunities in health care. Objective: We aimed to evaluate the acceptability, usability, and effectiveness of an evidence-based, theory-driven e-learning intervention to equip and promote professionals' self-efficacy to deliver family-centered supportive cancer care when a significant caregiving member for dependent children is at the end of life. Methods: Guided by the ``person-based approach,'' a mixed methods outcome evaluation was used. To determine the effect on self-efficacy, participants completed a validated pretest and posttest 12-item self-efficacy survey. The use of one-on-one, remote semistructured interviews and single-item questions determined the usability by professionals of the e-learning intervention and the acceptability of perceived learning in clinical practice. To generate enhanced insights, quantitative and qualitative data were integrated through a 4-stage, modified pillar integration process. Results: Overall, 158 participants completed the pretest survey for the e-learning resource, with 99 (62.7\%) completing the posttest survey. Semistructured interviews were conducted with 12 professionals at least 1 month after the intervention. Findings highlighted a statistically significant improvement in posttest self-efficacy (99/158, 62.7\%; P<.001). Usability of the e-learning intervention was positive, with participants reporting that it was clear and organized (mean 4.84, SD 0.373), the layout was appealing (mean 4.71, SD 0.539), the language was easy to understand (mean 4.71, SD 0.407), and graphics and media were purposeful (mean 4.76, SD 0.495) and engaging (mean 4.67, SD 0.703). Determining acceptability, participants considered that the intervention would positively impact practice (mean 4.60, SD 0.589) and increase knowledge (mean 4.56, SD 0.677), with appropriate practical examples to support learning (mean 4.58, SD 0.610). Following engagement with the e-learning intervention, professionals reported preparedness to deliver supportive adult-professional end-of-life cancer care, when an adult with significant caregiving responsibilities is dying. Findings demonstrated transferable learning to additional contexts, such as other close adult-child relational bonds (grandparents) and to life-limiting conditions. Conclusions: The systematic and iterative person-based approach optimized the acceptability of a novel e-learning intervention, having the potential to promote family-centered supportive end-of-life cancer care. This accessible e-learning intervention makes an important contribution to the recognized global gap of educational interventions in this field. Equipping professionals with family-centered supportive end-of-life care improves self-efficacy and preparedness to engage in challenging conversations, with the potential to promote better outcomes for affected adults and children and mediate adverse outcomes for adults and children before and after bereavement. ", doi="10.2196/65619", url="https://www.jmir.org/2024/1/e65619" } @Article{info:doi/10.2196/52551, author="Pierce, Joni and Conway, Mike and Grace, Kathryn and Mikal, Jude", title="Identifying Factors Associated With Heightened Anxiety During Breast Cancer Diagnosis Through the Analysis of Social Media Data on Reddit: Mixed Methods Study", journal="JMIR Cancer", year="2024", month="Dec", day="5", volume="10", pages="e52551", keywords="breast cancer", keywords="anxiety", keywords="NLP", keywords="natural language processing", keywords="mixed methods study", keywords="cancer diagnosis", keywords="social media apps", keywords="descriptive analysis", keywords="diagnostic progression", keywords="patient-centered care", abstract="Background: More than 85\% of patients report heightened levels of anxiety following breast cancer diagnosis. Anxiety may become amplified during the early stages of breast cancer diagnosis when ambiguity is high. High levels of anxiety can negatively impact patients by reducing their ability to function physically, make decisions, and adhere to treatment plans, with all these elements combined serving to diminish the quality of life. Objective: This study aimed to use individual social media posts about breast cancer experiences from Reddit (r/breastcancer) to understand the factors associated with breast cancer--related anxiety as individuals move from suspecting to confirming cancer diagnosis. Methods: We used a mixed method approach by combining natural language processing--based computational methods with descriptive analysis. Our team coded the entire corpus of 2170 unique posts from the r/breastcancer subreddit with respect to key variables, including whether the post was related to prediagnosis, diagnosis, or postdiagnosis concerns. We then used Linguistic Inquiry and Word Count (LIWC) to rank-order the codified posts as low, neutral, or high anxiety. High-anxiety posts were then retained for deep descriptive analysis to identify key themes relative to diagnostic progression. Results: After several iterations of data analysis and classification through both descriptive and computational methods, we identified a total of 448 high-anxiety posts across the 3 diagnostic categories. Our analyses revealed that individuals experience higher anxiety before a confirmed cancer diagnosis. Analysis of the high-anxiety posts revealed that the factors associated with anxiety differed depending on an individual's stage in the diagnostic process. Prediagnosis anxiety was associated with physical symptoms, cancer-related risk factors, communication, and interpreting medical information. During the diagnosis period, high anxiety was associated with physical symptoms, cancer-related risk factors, communication, and difficulty navigating the health care system. Following diagnosis, high-anxiety posts generally discussed topics related to treatment options, physical symptoms, emotional distress, family, and financial issues. Conclusions: This study has practical, theoretical, and methodological implications for cancer research. Content analysis reveals several possible drivers of anxiety at each stage (prediagnosis, during diagnosis, and postdiagnosis) and provides key insights into how clinicians can help to alleviate anxiety at all stages of diagnosis. Findings provide insights into cancer-related anxiety as a process beginning before engagement with the health care system: when an individual first notices possible cancer symptoms. Uncertainty around physical symptoms and risk factors suggests the need for increased education and improved access to trained medical staff who can assist patients with questions and concerns during the diagnostic process. Assistance in understanding technical reports, scheduling, and patient-centric clinician behavior may pinpoint opportunities for improved communication between patients and providers. ", doi="10.2196/52551", url="https://cancer.jmir.org/2024/1/e52551" } @Article{info:doi/10.2196/57415, author="Malandrone, Francesca and Urru, Sara and Berchialla, Paola and Rossini, Gilbert Pierre and Oliva, Francesco and Bianchi, Silvia and Ottaviano, Manuel and Gonzalez-Martinez, Sergio and Carli, Vladimir and Valenza, Gaetano and Scilingo, Pasquale Enzo and Carletto, Sara and Ostacoli, Luca", title="Exploring the Effects of Variety and Amount of Mindfulness Practices on Depression, Anxiety, and Stress Symptoms: Longitudinal Study on a Mental Health--Focused eHealth System for Patients With Breast or Prostate Cancer", journal="JMIR Ment Health", year="2024", month="Nov", day="21", volume="11", pages="e57415", keywords="depression", keywords="anxiety", keywords="stress", keywords="internet-based", keywords="mental health", keywords="mindfulness", keywords="breast cancer", keywords="prostate cancer", keywords="cancer-related mental distress", keywords="emotional distress", keywords="psychological distress", keywords="mindfulness-based interventions", keywords="MBI", keywords="e-MBI", keywords="dispositional mindfulness", keywords="self-compassion", keywords="mental wellbeing", keywords="mobile phone", abstract="Background: Patients with cancer often face depression and anxiety, and mindfulness-based interventions, including internet-based versions, can effectively reduce these symptoms and improve their quality of life. This study aims to investigate the impact of internet-based mindfulness-based interventions (e-MBIs) on anxiety, depression, and stress symptoms in patients with prostate or breast cancer. Objective: The primary aims are to assess the association between the amount and variety of e-MBI practices and symptom reduction. Second, this study aims to examine how baseline information such as sociodemographic characteristics, dispositional mindfulness (DM), and dispositional self-compassion (DSC) correlate with both app usage and symptom reduction. Methods: Participants included 107 patients with cancer (68 women with breast cancer and 38 men with prostate cancer) enrolled in a hospital setting. They were assigned to the intervention group of the NEVERMIND project, using the e-BMI module via the NEVERMIND app. A longitudinal design involved Pearson correlation analysis to determine the relationship between the amount and duration of e-MBI practices. Linear regression analysis was conducted to gauge the dose-response effect, evaluating the impact of DM and DSC on depression, anxiety, and stress. Negative binomial regression was conudcted to study sociodemographic factors' influence on the amount of practice in e-MBIs. Results: The participants with more diverse and sustained mindfulness practices experienced significant reductions in depression, anxiety, and stress. A high correlation (0.94) between e-MBI practices and symptom reduction was also highlighted. Male, married, and highly educated patients were more likely to engage in mindfulness. Even if DM and DSC did not impact the amount or variety of practices correlated, they were correlated with symptom reduction, showing that higher levels were associated with significant reductions in depression, anxiety, and stress. Conclusions: While more e-MBI practice is linked to reduced anxiety, depression, and stress, this study emphasizes the crucial role of variety of practice over amount. DM and DSC are key in shaping intervention effectiveness and may act as protectors against psychological distress. Using app log data, our research provides a unique perspective on e-MBI impact, contributing to cancer care understanding and guiding future studies. ", doi="10.2196/57415", url="https://mental.jmir.org/2024/1/e57415" } @Article{info:doi/10.2196/54715, author="Deribe, Leul and Girma, Eshetu and Lindstr{\"o}m, Nataliya and Gidey, Abdulkadir and Teferra, Solomon and Addissie, Adamu", title="Association of Family-Centered Care With Psychological Distress Among Caregivers of Children With Cancer at a Tertiary-Level Hospital in Ethiopia: Cross-Sectional Study", journal="JMIR Cancer", year="2024", month="Oct", day="10", volume="10", pages="e54715", keywords="child cancer", keywords="psychological distress", keywords="Ethiopia", keywords="parent", keywords="caregivers", keywords="family", abstract="Background: Psychological distress (PD) is a common mental health problem faced by caregivers of children with cancer. The involvement of families in childcare was found to be associated with lower levels of distress. Objective: The study aims to determine the associations between family-centered care (FCC) and PD among caregivers of children with cancer receiving treatment at Tikur Anbessa Specialized Hospital (TASH), Ethiopia. Methods: An institution-based, cross-sectional study was conducted from June to December 2022. Caregivers of children with cancer aged 0-14 years receiving cancer treatment at the pediatric oncology unit completed a face-to-face, interviewer-administered, structured questionnaire during a routine inpatient or outpatient visit. The questionnaire included questions on the characteristics of the child and caregiver, PD (measured by the Kessler Psychological Distress Scale [K10]), FCC (measured by the Measure of Processes of Care [MPOC-20]), and social support (measured by the Oslo-3 Social Support Scale [OSS-3]). Data were collected using the Kobo toolbox and exported to SPSS (version 26; IBM Corp) for cleaning and analysis. A multivariable logistic regression model was used. An odds ratio with a 95\% CI was calculated, and a P value less than .05 was considered statistically significant. Results: A total of 384 caregivers of children with cancer participated in the study. The total PD score ranged from 10 to 50, with a mean score of 17.30 (SD 8.96; 95\% CI 16.84-18.60). The proportion of caregivers found to have mild, moderate, and severe levels of PD was 43 (11.2\%), 35 (9.1\%), and 51 (13.3\%), respectively. The overall prevalence of mild to severe PD symptoms was 33.6\% (95\% CI 28.9\%-38.3\%). A statistically significant negative association was found between FCC and PD (adjusted odds ratio [AOR] 0.68, 95\% CI 0.53-0.86). In addition, having no formal education (AOR 2.87, 95\% CI 1.28-6.45), having a history of relapse (AOR 3.24, 95\% CI 1.17-9.02), beginning cancer treatment at TASH (AOR 2.82, 95\% CI 1.4-4.85), beginning treatment within the last 3 months (AOR 3.99, 95\% CI 1.73-9.23), and beginning treatment within the last 4 to 18 months (AOR 2.68, 95\% CI 1.25-5.76) were significantly associated with higher level of PD. Conclusions: A total of 1 in 3 caregivers have reported PD. FCC was found to be protective of PD. The finding of this study suggests the need for FCC intervention to improve the mental health condition of caregivers. In addition, the intervention needs to consider the educational status of the caregivers, the time since the cancer diagnosis, and the history of relapse. ", doi="10.2196/54715", url="https://cancer.jmir.org/2024/1/e54715" } @Article{info:doi/10.2196/56403, author="Nic Giolla Easpaig, Brona and Newman, Bronwyn and Johnson, Judith and Laidsaar-Powell, Rebekah and Sansom-Daly, M. Ursula and Jones, Lucy and Hofst{\"a}tter, Lukas and Robertson, G. Eden and Mears, Stephen and Sattarshetty, Kabir and Harrison, Reema", title="Supporting Carers: Study Protocol of a Meta-Review of Psychosocial Interventions for Carers of People With Cancer", journal="JMIR Res Protoc", year="2024", month="Sep", day="13", volume="13", pages="e56403", keywords="cancer", keywords="carer", keywords="caregiver", keywords="psychosocial", keywords="supportive intervention", keywords="psychosocial interventions", keywords="carers", keywords="caregivers", keywords="study protocol", keywords="well-being", keywords="wellbeing", keywords="end-users", keywords="evidence-based", keywords="evidence-based program", keywords="mental health", abstract="Background: While there is a clear need for psychosocial interventions that promote the well-being of carers of patients with cancer, the corresponding evidence base is disparate, complex, and difficult for end users to navigate and interpret. Carers remain undersupported with a lack of dedicated, effective, evidence-based programs. We will conduct a meta-review to synthesize this evidence and determine the state of science in this field. Objective: This study aims to address the question, ``what psychosocial interventions are available to promote the well-being of carers for people with cancer?'' Methods: A meta-review will synthesize the relevant reviews of psychosocial interventions that have been developed and evaluated with carers for people with cancer. A total of 4 electronic databases (PsycInfo, MEDLINE, CINAHL, and Cochrane Database of Systematic Reviews) will be searched for reviews published between January 2013 and December 2023. A team-based approach will be taken for screening and assessment of the returned records against the eligibility criteria to determine inclusion. Included reviews will be critically appraised using the Joanna Briggs Institute Critical Appraisal Checklist for Systematic Reviews and Research Syntheses. Relevant data on study characteristics, carer and patient populations, intervention details, and psychosocial outcomes will be extracted, synthesized, and the findings will be presented in a narrative format. Results: It is anticipated that the study will be completed by October 2024. Conclusions: Ensuring that carers have access to evidence-based programs that promote their well-being as they care for loved ones is critical. This meta-review will contribute to program development and translation efforts by providing a clear picture of the intervention evidence base of carers of patients with cancer and identifying notable strengths, weaknesses, and gaps across the literature. The findings are anticipated to offer future directions to advance research in the field. Trial Registration: PROSPERO (CRD42023403219); https://tinyurl.com/4tnzv49s International Registered Report Identifier (IRRID): DERR1-10.2196/56403 ", doi="10.2196/56403", url="https://www.researchprotocols.org/2024/1/e56403" } @Article{info:doi/10.2196/53309, author="Boensvang, Nybro Natasha and Weibel, Mette and Wakefield, E. Claire and Bidstrup, Envold Pernille and Olsen, Marianne and Nissen, B{\ae}kgaard Karin and Spager, Vibeke and Fridh, Kaj Martin and Larsen, B{\ae}kgaard Hanne", title="Online Ambassador Visits for Hospitalized Children With Cancer: Qualitative Evaluation of Implementation", journal="JMIR Pediatr Parent", year="2024", month="Sep", day="4", volume="7", pages="e53309", keywords="Children", keywords="cancer", keywords="school-aged", keywords="peers", keywords="interaction", keywords="online", keywords="in-hospital", keywords="social", keywords="relationship", keywords="quality of life", keywords="intervention", keywords="qualiative", abstract="Background: Children with cancer or cancer-like disease risk treatment-related isolation, which can negatively impact their peer relationships and social competencies and exacerbate their loneliness. During the COVID-19 pandemic, increased online socialization became the new normal imposed by national isolation guidelines. To adhere to the treatment-related isolation guidelines, children with cancer were offered online classmate ``ambassador'' visits during hospitalization. Objective: This study aimed to identify facilitators and barriers to online classmate ``ambassador'' visits during children with cancer's hospitalization through a qualitative descriptive process evaluation using the Consolidated Framework for Implementation Research. Methods: From January to April 2022, we conducted 39 individual semistructured interviews with hospitalized children (n=16), their classmates (n=16), teachers from their schools (n=3), and study nurses (n=4) from involved hospitals. Most interviews (n=37, 95\%) were conducted online using Microsoft Teams or Google Meet, while 2 (5\%) interviews were conducted in person at the participants' residences. This approach allowed us to gain a broad understanding of the facilitators and barriers to online ambassador visits. Results: We identified four themes: (1) working together, (2) ensuring participation, (3) staying connected, and (4) together online. The themes are described in terms of facilitators and barriers to online ambassador visits with 3 Consolidated Framework for Implementation Research domains: innovation, individuals, and the implementation process. Conclusions: Addressing the social needs of hospitalized children through online visits with their classmates may be relevant when one-on-one meetings are problematic. The online visits are highly dependent on collaboration between study nurses and teachers and assessing the needs of the hospitalized children. While a high degree of adult engagement and a stable internet connection are pivotal, these online visits can promote much-needed social interaction between children across physical settings. ", doi="10.2196/53309", url="https://pediatrics.jmir.org/2024/1/e53309" } @Article{info:doi/10.2196/55252, author="Hudson, Peter and Francis, Jill and Cohen, Joachim and Kapp, Suzanne and De Abreu Lourenco, Richard and Beatty, Lisa and Gray, Kathleen and Jefford, Michael and Juraskova, Ilona and Northouse, Laurel and de Vleminck, Aline and Chang, Sungwon and Yates, Patsy and Athan, Sophy and Baptista, Shaira and Klaic, Marlena and Philip, Jennifer", title="Improving the Well-Being of People With Advanced Cancer and Their Family Caregivers: Protocol for an Effectiveness-Implementation Trial of a Dyadic Digital Health Intervention (FOCUSau)", journal="JMIR Res Protoc", year="2024", month="Aug", day="13", volume="13", pages="e55252", keywords="advanced cancer", keywords="clinical trial", keywords="digital health intervention", keywords="palliative care", keywords="health economics", keywords="implementation science", keywords="wellbeing", keywords="well-being", keywords="cancer", keywords="family caregiver", keywords="family caregivers", keywords="caregivers", keywords="caregiver", keywords="digital health", keywords="quality of life", keywords="dyad", keywords="self-administered", keywords="web-based intervention", keywords="web-based", keywords="Australian", keywords="Australia", keywords="efficacy", keywords="cost-effectiveness", keywords="psychoeducation", abstract="Background: Advanced cancer significantly impacts patients' and family caregivers' quality of life. When patients and caregivers are supported concurrently as a dyad, the well-being of each person is optimized. Family, Outlook, Communication, Uncertainty, Symptom management (FOCUS) is a dyadic, psychoeducational intervention developed in the United States, shown to improve the well-being and quality of life of patients with advanced cancer and their primary caregivers. Originally, a nurse-delivered in-person intervention, FOCUS has been adapted into a self-administered web-based intervention for European delivery. Objective: The aims of this study are to (1) adapt FOCUS to the Australian context (FOCUSau); (2) evaluate the effectiveness of FOCUSau in improving the emotional well-being and self-efficacy of patients with advanced cancer and their primary caregiver relative to usual care control group; (3) compare health care use between the intervention and control groups; and (4) assess the acceptability, feasibility, and scalability of FOCUSau in order to inform future maintainable implementation of the intervention within the Australian health care system. Methods: FOCUS will be adapted prior to trial commencement, using an iterative stakeholder feedback process to create FOCUSau. To examine the efficacy and cost-effectiveness of FOCUSau and assess its acceptability, feasibility, and scalability, we will undertake a hybrid type 1 implementation study consisting of a phase 3 (clinical effectiveness) trial along with an observational implementation study. Participants will include patients with cancer who are older than 18 years, able to access the internet, and able to identify a primary support person or caregiver who can also be approached for participation. The sample size consists of 173 dyads in each arm (ie, 346 dyads in total). Patient-caregiver dyad data will be collected at 3 time points---baseline (T0) completed prerandomization; first follow-up (T1; N=346) at 12 weeks post baseline; and second follow-up (T2) at 24 weeks post baseline. Results: The study was funded in March 2022. Recruitment commenced in July 2024. Conclusions: If shown to be effective, this intervention will improve the well-being of patients with advanced cancer and their family caregivers, regardless of their location or current level of health care support. Trial Registration: ClinicalTrials.gov NCT06082128; https://clinicaltrials.gov/study/NCT06082128 International Registered Report Identifier (IRRID): PRR1-10.2196/55252 ", doi="10.2196/55252", url="https://www.researchprotocols.org/2024/1/e55252" } @Article{info:doi/10.2196/43070, author="Leung, W. Yvonne and Wouterloot, Elise and Adikari, Achini and Hong, Jinny and Asokan, Veenaajaa and Duan, Lauren and Lam, Claire and Kim, Carlina and Chan, P. Kai and De Silva, Daswin and Trachtenberg, Lianne and Rennie, Heather and Wong, Jiahui and Esplen, Jane Mary", title="Artificial Intelligence--Based Co-Facilitator (AICF) for Detecting and Monitoring Group Cohesion Outcomes in Web-Based Cancer Support Groups: Single-Arm Trial Study", journal="JMIR Cancer", year="2024", month="Jul", day="22", volume="10", pages="e43070", keywords="group cohesion", keywords="LIWC", keywords="online support group", keywords="natural language processing", keywords="NLP", keywords="emotion analysis", keywords="machine learning", keywords="sentiment analysis", keywords="emotion detection", keywords="integrating human knowledge", keywords="emotion lining", keywords="cancer", keywords="oncology", keywords="support group", keywords="artificial intelligence", keywords="AI", keywords="therapy", keywords="online therapist", keywords="emotion", keywords="affect", keywords="speech tagging", keywords="speech tag", keywords="topic modeling", keywords="named entity recognition", keywords="spoken language processing", keywords="focus group", keywords="corpus", keywords="language", keywords="linguistic", abstract="Background: Commonly offered as supportive care, therapist-led online support groups (OSGs) are a cost-effective way to provide support to individuals affected by cancer. One important indicator of a successful OSG session is group cohesion; however, monitoring group cohesion can be challenging due to the lack of nonverbal cues and in-person interactions in text-based OSGs. The Artificial Intelligence--based Co-Facilitator (AICF) was designed to contextually identify therapeutic outcomes from conversations and produce real-time analytics. Objective: The aim of this study was to develop a method to train and evaluate AICF's capacity to monitor group cohesion. Methods: AICF used a text classification approach to extract the mentions of group cohesion within conversations. A sample of data was annotated by human scorers, which was used as the training data to build the classification model. The annotations were further supported by finding contextually similar group cohesion expressions using word embedding models as well. AICF performance was also compared against the natural language processing software Linguistic Inquiry Word Count (LIWC). Results: AICF was trained on 80,000 messages obtained from Cancer Chat Canada. We tested AICF on 34,048 messages. Human experts scored 6797 (20\%) of the messages to evaluate the ability of AICF to classify group cohesion. Results showed that machine learning algorithms combined with human input could detect group cohesion, a clinically meaningful indicator of effective OSGs. After retraining with human input, AICF reached an F1-score of 0.82. AICF performed slightly better at identifying group cohesion compared to LIWC. Conclusions: AICF has the potential to assist therapists by detecting discord in the group amenable to real-time intervention. Overall, AICF presents a unique opportunity to strengthen patient-centered care in web-based settings by attending to individual needs. International Registered Report Identifier (IRRID): RR2-10.2196/21453 ", doi="10.2196/43070", url="https://cancer.jmir.org/2024/1/e43070", url="http://www.ncbi.nlm.nih.gov/pubmed/39037754" } @Article{info:doi/10.2196/58724, author="Kim, Sunghak and Wilson, Paije and Abraham, Olufunmilola", title="Investigating the Use of Serious Games for Cancer Control Among Children and Adolescents: Scoping Review", journal="JMIR Serious Games", year="2024", month="Jul", day="10", volume="12", pages="e58724", keywords="serious games", keywords="cancer control", keywords="children", keywords="adolescents", keywords="scoping review", keywords="game", keywords="games", keywords="gaming", keywords="cancer", keywords="oncology", keywords="pediatric", keywords="pediatrics", keywords="paediatric", keywords="paediatrics", keywords="child", keywords="youth", keywords="adolescent", keywords="teen", keywords="teens", keywords="teenager", keywords="teenagers", keywords="synthesis", keywords="review methods", keywords="review methodology", keywords="search", keywords="searches", keywords="searching", keywords="scoping", abstract="Background: Effective health care services that meet the diverse needs of children and adolescents with cancer are required to alleviate their physical, psychological, and social challenges and improve their quality of life. Previous studies showed that serious games help promote people's health. However, the potential for serious games to be used for successful cancer control for children and adolescents has received less attention. Objective: This scoping review aimed to map the use of serious games in cancer prevention and cancer care for children and adolescents, and provide future directions for serious games' development and implementation within the context of cancer control for children and adolescents. Methods: This study followed a combination of the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) and the JBI (Joanna Briggs Institute) framework for the conduct of scoping reviews. PubMed, CINAHL Plus Full Text, Scopus, Web of Science Core Collection, and American Psychological Association (APA) PsycINFO databases were used for the search. Results: From the initial 2750 search results, 63 papers were included in the review, with 28 quantitative, 14 qualitative, and 21 mixed method studies. Most of the studies were cancer care serious game papers (55/63, 87\%) and a small number of studies were cancer prevention serious game papers (8/63, 13\%). The majority of the included studies were published between 2019 and 2023 (cancer prevention: 5/8, 63\%; cancer care: 35/55, 64\%). The majority of the studies were conducted in Europe (cancer prevention: 3/8, 38\%; cancer care: 24/55, 44\%) and North America (cancer prevention: 4/8, 50\%; cancer care: 17/55, 31\%). Adolescents were the most represented age group in the studies' participants (cancer prevention: 8/8, 100\%; cancer care: 46/55, 84\%). All (8/8, 100\%) cancer prevention serious game papers included healthy people as participants, and 45 out of 55 (82\%) cancer care serious game papers included patients with cancer. The majority of cancer prevention serious game papers addressed game preference as a target outcome (4/8, 50\%). The majority of cancer care serious game papers addressed symptom management as a target outcome (28/55, 51\%). Of the cancer care studies examining serious games for symptom management, the majority of the studies were conducted to treat psychological (13/55, 24\%) and physical symptoms (10/55, 18\%). Conclusions: This review shows both the growth of interest in the use of serious games for cancer control among children and adolescents and the potential for bias in the relevant literature. The diverse characteristics of the included papers suggest that serious games can be used in various ways for cancer control among children and adolescents while highlighting the need to develop and implement serious games in underrepresented areas. ", doi="10.2196/58724", url="https://games.jmir.org/2024/1/e58724", url="http://www.ncbi.nlm.nih.gov/pubmed/38985502" } @Article{info:doi/10.2196/47704, author="Wang, Ting and Tang, Chulei and Jiang, Xiaoman and Guo, Yinning and Zhu, Shuqin and Xu, Qin", title="Effectiveness of Web-Based Mindfulness-Based Interventions for Patients With Cancer: Systematic Review and Meta-Analyses", journal="J Med Internet Res", year="2024", month="Jun", day="25", volume="26", pages="e47704", keywords="cancer", keywords="mindfulness-based interventions", keywords="mental health", keywords="randomized controlled trial", keywords="systematic review", keywords="meta-analysis", keywords="mindfulness", keywords="web-based intervention", keywords="oncology", keywords="delivery mode", keywords="efficacy", keywords="quality of life", keywords="program", keywords="adherence", keywords="mobile phone", abstract="Background: Cancer has emerged as a considerable global health concern, contributing substantially to both morbidity and mortality. Recognizing the urgent need to enhance the overall well-being and quality of life (QOL) of cancer patients, a growing number of researchers have started using online mindfulness-based interventions (MBIs) in oncology. However, the effectiveness and optimal implementation methods of these interventions remain unknown. Objective: This study evaluates the effectiveness of online MBIs, encompassing both app- and website-based MBIs, for patients with cancer and provides insights into the potential implementation and sustainability of these interventions in real-world settings. Methods: Searches were conducted across 8 electronic databases, including the Cochrane Library, Web of Science, PubMed, Embase, SinoMed, CINAHL Complete, Scopus, and PsycINFO, until December 30, 2022. Randomized controlled trials involving cancer patients aged ?18 years and using app- and website-based MBIs compared to standard care were included. Nonrandomized studies, interventions targeting health professionals or caregivers, and studies lacking sufficient data were excluded. Two independent authors screened articles, extracted data using standardized forms, and assessed the risk of bias in the studies using the Cochrane Bias Risk Assessment Tool. Meta-analyses were performed using Review Manager (version 5.4; The Cochrane Collaboration) and the meta package in R (R Foundation for Statistical Computing). Standardized mean differences (SMDs) were used to determine the effects of interventions. The Reach, Effectiveness, Adoption, Implementation, and Maintenance framework was used to assess the potential implementation and sustainability of these interventions in real-world settings. Results: Among 4349 articles screened, 15 (0.34\%) were included. The total population comprised 1613 participants, of which 870 (53.9\%) were in the experimental conditions and 743 (46.1\%) were in the control conditions. The results of the meta-analysis showed that compared with the control group, the QOL (SMD 0.37, 95\% CI 0.18-0.57; P<.001), sleep (SMD ?0.36, 95\% CI ?0.71 to ?0.01; P=.04), anxiety (SMD ?0.48, 95\% CI ?0.75 to ?0.20; P<.001), depression (SMD ?0.36, 95\% CI ?0.61 to ?0.11; P=.005), distress (SMD ?0.50, 95\% CI ?0.75 to ?0.26; P<.001), and perceived stress (SMD ?0.89, 95\% CI ?1.33 to ?0.45; P=.003) of the app- and website-based MBIs group in patients with cancer was significantly alleviated after the intervention. However, no significant differences were found in the fear of cancer recurrence (SMD ?0.30, 95\% CI ?1.04 to 0.44; P=.39) and posttraumatic growth (SMD 0.08, 95\% CI ?0.26 to 0.42; P=.66). Most interventions were multicomponent, website-based health self-management programs, widely used by international and multilingual patients with cancer. Conclusions: App- and website-based MBIs show promise for improving mental health and QOL outcomes in patients with cancer, and further research is needed to optimize and customize these interventions for individual physical and mental symptoms. Trial Registration: PROSPERO CRD42022382219; https://www.crd.york.ac.uk/prospero/display\_record.php?RecordID=382219 ", doi="10.2196/47704", url="https://www.jmir.org/2024/1/e47704" } @Article{info:doi/10.2196/53897, author="Collins, Luke and Nicholson, Niamh and Lidbetter, Nicky and Smithson, Dave and Baker, Paul", title="Implementation of Anxiety UK's Ask Anxia Chatbot Service: Lessons Learned", journal="JMIR Hum Factors", year="2024", month="Jun", day="17", volume="11", pages="e53897", keywords="chatbots", keywords="anxiety disorders", keywords="corpus linguistics", keywords="conversational agents", keywords="web-based care", doi="10.2196/53897", url="https://humanfactors.jmir.org/2024/1/e53897", url="http://www.ncbi.nlm.nih.gov/pubmed/38885016" } @Article{info:doi/10.2196/52386, author="Schl{\"a}pfer, Sonja and Schneider, Fabian and Santhanam, Prabhakaran and Eicher, Manuela and Kowatsch, Tobias and Witt, M. Claudia and Barth, J{\"u}rgen", title="Engagement With a Relaxation and Mindfulness Mobile App Among People With Cancer: Exploratory Analysis of Use Data and Self-Reports From a Randomized Controlled Trial", journal="JMIR Cancer", year="2024", month="May", day="31", volume="10", pages="e52386", keywords="mobile health", keywords="mHealth", keywords="digital health", keywords="eHealth", keywords="smartphone", keywords="mobile phone", keywords="implementation", keywords="adherence", keywords="self-guided", keywords="unguided", keywords="fully automated", keywords="conversational agent", keywords="chatbot", keywords="behavior change", keywords="tailoring", keywords="self-care", keywords="cancer", keywords="app development", abstract="Background: Mobile health (mHealth) apps offer unique opportunities to support self-care and behavior change, but poor user engagement limits their effectiveness. This is particularly true for fully automated mHealth apps without any human support. Human support in mHealth apps is associated with better engagement but at the cost of reduced scalability. Objective: This work aimed to (1) describe the theory-informed development of a fully automated relaxation and mindfulness app to reduce distress in people with cancer (CanRelax app 2.0), (2) describe engagement with the app on multiple levels within a fully automated randomized controlled trial over 10 weeks, and (3) examine whether engagement was related to user characteristics. Methods: The CanRelax app 2.0 was developed in iterative processes involving input from people with cancer and relevant experts. The app includes evidence-based relaxation exercises, personalized weekly coaching sessions with a rule-based conversational agent, 39 self-enactable behavior change techniques, a self-monitoring dashboard with gamification elements, highly tailored reminder notifications, an educational video clip, and personalized in-app letters. For the larger study, German-speaking adults diagnosed with cancer within the last 5 years were recruited via the web in Switzerland, Austria, and Germany. Engagement was analyzed in a sample of 100 study participants with multiple measures on a micro level (completed coaching sessions, relaxation exercises practiced with the app, and feedback on the app) and a macro level (relaxation exercises practiced without the app and self-efficacy toward self-set weekly relaxation goals). Results: In week 10, a total of 62\% (62/100) of the participants were actively using the CanRelax app 2.0. No associations were identified between engagement and level of distress at baseline, sex assigned at birth, educational attainment, or age. At the micro level, 71.88\% (3520/4897) of all relaxation exercises and 714 coaching sessions were completed in the app, and all participants who provided feedback (52/100, 52\%) expressed positive app experiences. At the macro level, 28.12\% (1377/4897) of relaxation exercises were completed without the app, and participants' self-efficacy remained stable at a high level. At the same time, participants raised their weekly relaxation goals, which indicates a potential relative increase in self-efficacy. Conclusions: The CanRelax app 2.0 achieved promising engagement even though it provided no human support. Fully automated social components might have compensated for the lack of human involvement and should be investigated further. More than one-quarter (1377/4897, 28.12\%) of all relaxation exercises were practiced without the app, highlighting the importance of assessing engagement on multiple levels. ", doi="10.2196/52386", url="https://cancer.jmir.org/2024/1/e52386", url="http://www.ncbi.nlm.nih.gov/pubmed/38819907" } @Article{info:doi/10.2196/52156, author="Pan, Peng and Yu, Changhua and Li, Tao and Dai, Tingting and Tian, Hanhan and Xiong, Yaozu and Lv, Jie and Hu, Xiaochu and Ma, Weidong and Yin, Wenda", title="Evaluating the Quality of Cancer-Related WeChat Public Accounts: Cross-Sectional Study", journal="JMIR Cancer", year="2024", month="May", day="30", volume="10", pages="e52156", keywords="cancer", keywords="big data", keywords="social media", keywords="health literacy", keywords="WeChat", keywords="China", keywords="public health", abstract="Background: WeChat (Tencent) is one of the most important information sources for Chinese people. Relevantly, various health-related data are constantly transmitted among WeChat users. WeChat public accounts (WPAs) for health are rapidly emerging. Health-related WeChat public accounts have a significant impact on public health. Because of the rise in web-based health-seeking behavior, the general public has grown accustomed to obtaining cancer information from WPAs. Although WPAs make it easy for people to obtain health information, the quality of the information is questionable. Objective: This study aims to assess the quality and suitability of cancer-related WeChat public accounts (CWPAs). Methods: The survey was conducted from February 1 to 28, 2023. Based on the WPA monthly list provided by Qingbo Big Data, 28 CWPAs in the WeChat communication index were selected as the survey sample. Quality assessment of the included CWPAs was performed using the HONcode instrument. Furthermore, suitability was measured by using the Suitability Assessment of Materials. A total of 2 researchers conducted the evaluations independently. Results: Of the 28 CWPAs, 12 (43\%) were academic and 16 (57\%) were commercial. No statistical difference was found regarding the HONcode scores between the 2 groups (P=.96). The quality of the academic and commercial CWPAs evaluated using the HONcode instrument demonstrated mean scores of 5.58 (SD 2.02) and 5.63 (SD 2.16), respectively, corresponding to a moderate class. All CWPAs' compliance with the HONcode principles was unsatisfactory. A statistically significant difference between the 2 groups was observed in the Suitability Assessment of Materials scores (P=.04). The commercial WPAs reached an overall 55.1\% (SD 5.5\%) score versus the 50.2\% (SD 6.4\%) score reached by academic WPAs. The suitability of academic and commercial CWPAs was considered adequate. Conclusions: This study revealed that CWPAs are not sufficiently credible. WPA owners must endeavor to create reliable health websites using approved tools such as the HONcode criteria. However, it is necessary to educate the public about the evaluation tools of health websites to assess their credibility before using the provided content. In addition, improving readability will allow the public to read and understand the content. ", doi="10.2196/52156", url="https://cancer.jmir.org/2024/1/e52156", url="http://www.ncbi.nlm.nih.gov/pubmed/38814688" } @Article{info:doi/10.2196/51332, author="Zhang, Zhouqing and Liew, Kongmeng and Kuijer, Roeline and She, Jou Wan and Yada, Shuntaro and Wakamiya, Shoko and Aramaki, Eiji", title="Differing Content and Language Based on Poster-Patient Relationships on the Chinese Social Media Platform Weibo: Text Classification, Sentiment Analysis, and Topic Modeling of Posts on Breast Cancer", journal="JMIR Cancer", year="2024", month="May", day="9", volume="10", pages="e51332", keywords="cancer", keywords="social media", keywords="text classification", keywords="topic modeling", keywords="sentiment analysis", keywords="Weibo", abstract="Background: Breast cancer affects the lives of not only those diagnosed but also the people around them. Many of those affected share their experiences on social media. However, these narratives may differ according to who the poster is and what their relationship with the patient is; a patient posting about their experiences may post different content from someone whose friends or family has breast cancer. Weibo is 1 of the most popular social media platforms in China, and breast cancer--related posts are frequently found there. Objective: With the goal of understanding the different experiences of those affected by breast cancer in China, we aimed to explore how content and language used in relevant posts differ according to who the poster is and what their relationship with the patient is and whether there are differences in emotional expression and topic content if the patient is the poster themselves or a friend, family member, relative, or acquaintance. Methods: We used Weibo as a resource to examine how posts differ according to the different poster-patient relationships. We collected a total of 10,322 relevant Weibo posts. Using a 2-step analysis method, we fine-tuned 2 Chinese Robustly Optimized Bidirectional Encoder Representations from Transformers (BERT) Pretraining Approach models on this data set with annotated poster-patient relationships. These models were lined in sequence, first a binary classifier (no\_patient or patient) and then a multiclass classifier (post\_user, family\_members, friends\_relatives, acquaintances, heard\_relation), to classify poster-patient relationships. Next, we used the Linguistic Inquiry and Word Count lexicon to conduct sentiment analysis from 5 emotion categories (positive and negative emotions, anger, sadness, and anxiety), followed by topic modeling (BERTopic). Results: Our binary model (F1-score=0.92) and multiclass model (F1-score=0.83) were largely able to classify poster-patient relationships accurately. Subsequent sentiment analysis showed significant differences in emotion categories across all poster-patient relationships. Notably, negative emotions and anger were higher for the ``no\_patient'' class, but sadness and anxiety were higher for the ``family\_members'' class. Focusing on the top 30 topics, we also noted that topics on fears and anger toward cancer were higher in the ``no\_patient'' class, but topics on cancer treatment were higher in the ``family\_members'' class. Conclusions: Chinese users post different types of content, depending on the poster- poster-patient relationships. If the patient is family, posts are sadder and more anxious but also contain more content on treatments. However, if no patient is detected, posts show higher levels of anger. We think that these may stem from rants from posters, which may help with emotion regulation and gathering social support. ", doi="10.2196/51332", url="https://cancer.jmir.org/2024/1/e51332", url="http://www.ncbi.nlm.nih.gov/pubmed/38723250" } @Article{info:doi/10.2196/55102, author="Zhao, Haiyan and Zhou, Ye and Che, Chin Chong and Chong, Chan Mei and Zheng, Yu and Hou, Yuzhu and Chen, Canjuan and Zhu, Yantao", title="Marital Self-Disclosure Intervention for the Fear of Cancer Recurrence in Chinese Patients With Gastric Cancer: Protocol for a Quasiexperimental Study", journal="JMIR Res Protoc", year="2024", month="Apr", day="29", volume="13", pages="e55102", keywords="fear of cancer recurrence", keywords="dyadic coping ability", keywords="gastric cancer", keywords="intervention", keywords="nursing", keywords="protocol", keywords="psychological", keywords="marital self-disclosure", abstract="Background: Patients with gastric cancer experience different degrees of fear of cancer recurrence. The fear of cancer recurrence can cause and worsen many physical and psychological problems. We considered the ``intimacy and relationship processes in couples' psychosocial adaptation'' model. Objective: The study aims to examine the effectiveness of a marital self-disclosure intervention for improving the level of fear of cancer recurrence and the dyadic coping ability among gastric cancer survivors and their spouses. Methods: This is a quasiexperimental study with a nonequivalent (pretest-posttest) control group design. The study will be conducted at 2 tertiary hospitals in Taizhou City, Jiangsu Province, China. A total of 42 patients with gastric cancer undergoing chemotherapy and their spouses will be recruited from each hospital. Participants from Jingjiang People's Hospital will be assigned to an experimental group, while participants from Taizhou People's Hospital will be assigned to a control group. The participants in the experimental group will be involved in 4 phases of the marital self-disclosure (different topics, face-to-face) intervention. Patients will be evaluated at baseline after a diagnosis of gastric cancer and reassessed 2 to 4 months after baseline. The primary outcome is the score of the Fear of Progression Questionnaire-Short Form (FoP-Q-SF) for patients. The secondary outcomes are the scores of the FoP-Q-SF for partners and the Dyadic Coping Inventory. Results: Research activities began in October 2022. Participant enrollment and data collection began in February 2023 and are expected to be completed in 12 months. The primary results of this study are anticipated to be announced in June 2024. Conclusions: This study aims to assess a marital self-disclosure intervention for improving the fear of cancer recurrence in Chinese patients with gastric cancer and their spouses. The study is likely to yield desirable positive outcomes as marital self-disclosure is formulated based on evidence and inputs obtained through stakeholder interviews and expert consultation. The study process will be carried out by nurses who have received psychological training, and the quality of the intervention will be strictly controlled. Trial Registration: ClinicalTrials.gov NCT05606549; https://clinicaltrials.gov/study/NCT05606549 International Registered Report Identifier (IRRID): DERR1-10.2196/55102 ", doi="10.2196/55102", url="https://www.researchprotocols.org/2024/1/e55102", url="http://www.ncbi.nlm.nih.gov/pubmed/38684089" } @Article{info:doi/10.2196/55402, author="Arring, Noel and Barton, L. Debra and Lafferty, Carolyn and Cox, Bryana and Conroy, A. Deirdre and An, Lawrence", title="Mi Sleep Coach Mobile App to Address Insomnia Symptoms Among Cancer Survivors: Single-Arm Feasibility Study", journal="JMIR Form Res", year="2024", month="Apr", day="26", volume="8", pages="e55402", keywords="cognitive behavioral therapy", keywords="insomnia", keywords="mobile health", keywords="breast cancer", keywords="prostate cancer", keywords="colon cancer", keywords="cancer survivor", abstract="Background: Rates of sleep disturbance among survivors of cancer are more than 3 times higher than the general population. Causes of sleep disturbance among survivors are many and multifaceted, including anxiety and fear related to cancer diagnosis and treatments. Cognitive behavioral therapy for insomnia (CBT-I) is considered a first-line treatment for insomnia; However, a lack of access to trained professionals and limited insurance coverage for CBT-I services has limited patient access to these effective treatments. Evidence supports digital delivery of CBT-I (dCBT-I), but there is only limited evidence to support its use among survivors of cancer. Broad adoption of smartphone technology provides a new channel to deliver dCBT-I, but no prior studies have evaluated mobile dCBT-I interventions for survivors. To address the need for accessible and efficacious CBT-I for survivors of cancer, the Mi Sleep Coach program was developed to adapt CBT-I for delivery to survivors of cancer as a self-directed mobile health app. Objective: This single-arm feasibility study assessed the adherence, attrition, usefulness, and satisfaction of the Mi Sleep Coach app for insomnia. Methods: A 7-week, single-arm study was conducted, enrolling adult survivors of breast, prostate, or colon cancer reporting sleep disturbances. Results: In total, 30 participants were enrolled, with 100\% completing the study and providing data through week 7. Further, 9 out of 10 app features were found to be useful by 80\% (n=24) to 93\% (n=28) of the 30 participants. Furthermore, 27 (90\%) participants were satisfied with the Mi Sleep Coach app and 28 (93\%) would recommend the use of the Mi Sleep Coach app for those with insomnia. The Insomnia Severity Index showed a decrease from baseline (18.5, SD 4.6) to week 7 (10.4, SD 4.2) of 8.1 (P<.001; Cohen d=1.5). At baseline, 25 (83\%) participants scored in the moderate (n=19; 15-21) or severe (n=6; 22-28) insomnia range. At week 7, a total of 4 (13\%) patients scored in the moderate (n=4) or severe (n=0) range. The number of patients taking prescription sleep medications decreased from 7 (23\%) at baseline to 1 (3\%; P<.001) at week 7. The number of patients taking over-the-counter sleep medications decreased from 14 (47\%) at baseline to 9 (30\%; P=.03) at week 7. Conclusions: The Mi Sleep Coach app demonstrated high levels of program adherence and user satisfaction and had large effects on the severity of insomnia among survivors of cancer. The Mi Sleep Coach app is a promising intervention for cancer-related insomnia, and further clinical trials are warranted. If proven to significantly decrease insomnia in survivors of cancer in future randomized controlled clinical trials, this intervention would provide more survivors of cancer with easy access to evidence-based CBT-I treatment. Trial Registration: ClinicalTrials.gov NCT04827459; https://clinicaltrials.gov/study/NCT04827459 ", doi="10.2196/55402", url="https://formative.jmir.org/2024/1/e55402", url="http://www.ncbi.nlm.nih.gov/pubmed/38669678" } @Article{info:doi/10.2196/51949, author="Springer, Franziska and Maier, Ayline and Friedrich, Michael and Raue, Simon Jan and Finke, Gandolf and Lordick, Florian and Montgomery, Guy and Esser, Peter and Brock, Hannah and Mehnert-Theuerkauf, Anja", title="Digital Therapeutic (Mika) Targeting Distress in Patients With Cancer: Results From a Nationwide Waitlist Randomized Controlled Trial", journal="J Med Internet Res", year="2024", month="Apr", day="25", volume="26", pages="e51949", keywords="digital therapeutic", keywords="digital health", keywords="mobile health", keywords="app", keywords="cancer", keywords="randomized controlled trial", keywords="supportive care", keywords="oncology", keywords="access to care", keywords="distress", keywords="depression", keywords="anxiety", keywords="fatigue", keywords="mobile phone", abstract="Background: Distress is highly prevalent among patients with cancer, but supportive care needs often go unmet. Digital therapeutics hold the potential to overcome barriers in cancer care and improve health outcomes. Objective: This study conducted a randomized controlled trial to investigate the efficacy of Mika, an app-based digital therapeutic designed to reduce distress across the cancer trajectory. Methods: This nationwide waitlist randomized controlled trial in Germany enrolled patients with cancer across all tumor entities diagnosed within the last 5 years. Participants were randomized into the intervention (Mika plus usual care) and control (usual care alone) groups. The participants completed web-based assessments at baseline and at 2, 6, and 12 weeks. The primary outcome was the change in distress from baseline to week 12, as measured by the National Comprehensive Cancer Network Distress Thermometer. Secondary outcomes included depression, anxiety (Hospital Anxiety and Depression Scale), fatigue (Functional Assessment of Chronic Illness Therapy-Fatigue), and quality of life (Clinical Global Impression-Improvement Scale). Intention-to-treat and per-protocol analyses were performed. Analyses of covariance were used to test for outcome changes over time between the groups, controlling for baseline. Results: A total of 218 patients (intervention: n=99 and control: n=119) were included in the intention-to-treat analysis. Compared with the control group, the intervention group reported greater reductions in distress (P=.03; $\eta$p{\texttwosuperior}=0.02), depression (P<.001; $\eta$p{\texttwosuperior}=0.07), anxiety (P=.03; $\eta$p{\texttwosuperior}=0.02), and fatigue (P=.04; $\eta$p{\texttwosuperior}=0.02). Per-protocol analyses revealed more pronounced treatment effects, with the exception of fatigue. No group difference was found for quality of life. Conclusions: Mika effectively diminished distress in patients with cancer. As a digital therapeutic solution, Mika offers accessible, tailored psychosocial and self-management support to address the unmet needs in cancer care. Trial Registration: German Clinical Trials Register (DRKS) DRKS00026038; https://drks.de/search/en/trial/DRKS00026038 ", doi="10.2196/51949", url="https://www.jmir.org/2024/1/e51949", url="http://www.ncbi.nlm.nih.gov/pubmed/38663007" } @Article{info:doi/10.2196/53668, author="Shalaby, Reham and Vuong, Wesley and Agyapong, Belinda and Gusnowski, April and Surood, Shireen and Agyapong, Vincent", title="Cancer Care Supportive Text Messaging Program (Text4Hope) for People Living With Cancer and Their Caregivers During the COVID-19 Pandemic: Longitudinal Observational Study", journal="JMIR Form Res", year="2024", month="Apr", day="24", volume="8", pages="e53668", keywords="Text4Hope Cancer Care", keywords="COVID-19", keywords="cancer", keywords="caregivers", keywords="mental health", keywords="anxiety", keywords="depression", keywords="cancer care", keywords="Canada", keywords="Canadian", keywords="treatment", keywords="stress", abstract="Background: Cancer is the leading cause of death in Canada, and living with cancer generates psychological demands, including depression and anxiety among cancer survivors and caregivers. Text4Hope-Cancer Care SMS text messaging--based service was provided to people with cancer and caregivers during the COVID-19 pandemic to support their mental health. Objective: The aim of this study is to examine the clinical effectiveness of and satisfaction with Text4Hope-Cancer Care in addressing mental health conditions among people living with cancer and caregivers. Methods: The study was conducted in Alberta, Canada. People who were diagnosed or receiving cancer treatment and caregivers self-subscribed to receive 3-months daily supportive cognitive behavioral therapy--based SMS text messages and a web-based survey was sent at designated time points to collect clinical and nonclinical data. The Hospital Anxiety and Depression scale (HADS) was used to examine changes in anxiety and depression symptoms after receiving the service. Satisfaction with the service was assessed using a survey with a Likert scale. Descriptive and inferential statistics were used, and test significance was considered with P?.05. Results: Overall, 107 individuals subscribed to the service, and 93 completed the program (completion rate 93/107, 86.9\%). A significant improvement in the anxiety symptoms (HADS-Anxiety [HADS-A] subscale) was reported after 3 months of Text4Hope-Cancer Care (t11=2.62; P=.02), with medium effect size (Hedges g=0.7), but not depression symptoms (HADS-Depression [HADS-D] subscale). Subscribers expressed high satisfaction and agreed that the service has helped them to cope with mental health symptoms and improve their quality of life. Most subscribers read the SMS text messages more than once (30/30, 100\%); took time to reflect or took a beneficial action after reading the messages (27/30, 90\%); and highly agreed (27/30, >80\%) with the value of the received supportive SMS text messages as being relevant, succinct, affirmative, and positive. All subscribers recommended SMS text messaging for stress, anxiety, and depression and for cancer care support (30/30, 100\%). Conclusions: Text4Hope-Cancer Care was well-perceived and effectively addressed anxiety symptoms among people living with cancer and caregivers during the peak of the COVID-19 pandemic. This study provides evidence-based support and insight for policy and stakeholders to implement similar convenient, economic, and accessible mental health services that support vulnerable populations during crises. International Registered Report Identifier (IRRID): RR2-10.2196/20240 ", doi="10.2196/53668", url="https://formative.jmir.org/2024/1/e53668", url="http://www.ncbi.nlm.nih.gov/pubmed/38657234" } @Article{info:doi/10.2196/53307, author="Cho, Dalnim and Roth, Michael and Peterson, K. Susan and Jennings, Kristofer and Kim, Seokhun and Weathers, Shiao-Pei and Ahmed, Sairah and Livingston, Andrew J. and Barcenas, Carlos and You, Nancy Y. and Milbury, Kathrin", title="Associations Between Stress, Health Behaviors, and Quality of Life in Young Couples During the Transition to Survivorship: Protocol for a Measurement Burst Study", journal="JMIR Res Protoc", year="2024", month="Apr", day="23", volume="13", pages="e53307", keywords="young adult survivors", keywords="caregivers", keywords="dyadic", keywords="couple-based", keywords="stress", keywords="health behaviors", keywords="quality of life", keywords="transition to survivorship", keywords="measurement-burst", abstract="Background: Cancer is a life-threatening, stressful event, particularly for young adults due to delays and disruptions in their developmental transitions. Cancer treatment can also cause adverse long-term effects, chronic conditions, psychological issues, and decreased quality of life (QoL) among young adults. Despite numerous health benefits of health behaviors (eg, physical activity, healthy eating, no smoking, no alcohol use, and quality sleep), young adult cancer survivors report poor health behavior profiles. Determining the associations of stress (either cancer-specific or day-to-day stress), health behaviors, and QoL as young adult survivors transition to survivorship is key to understanding and enhancing these survivors' health. It is also crucial to note that the effects of stress on health behaviors and QoL may manifest on a shorter time scale (eg, daily within-person level). Moreover, given that stress spills over into romantic relationships, it is important to identify the role of spouses or partners (hereafter partners) in these survivors' health behaviors and QoL. Objective: This study aims to investigate associations between stress, health behaviors, and QoL at both within- and between-person levels during the transition to survivorship in young adult cancer survivors and their partners, to identify the extent to which young adult survivors' and their partners' stress facilitates or hinders their own and each other's health behaviors and QoL. Methods: We aim to enroll 150 young adults (aged 25-39 years at the time of cancer diagnosis) who have recently completed cancer treatment, along with their partners. We will conduct a prospective longitudinal study using a measurement burst design. Participants (ie, survivors and their partners) will complete a daily web-based survey for 7 consecutive days (a ``burst'') 9 times over 2 years, with the bursts spaced 3 months apart. Participants will self-report their stress, health behaviors, and QoL. Additionally, participants will be asked to wear an accelerometer to assess their physical activity and sleep during the burst period. Finally, dietary intake (24-hour diet recalls) will be assessed during each burst via telephone by research staff. Results: Participant enrollment began in January 2022. Recruitment and data collection are expected to conclude by December 2024 and December 2026, respectively. Conclusions: To the best of our knowledge, this will be the first study that determines the interdependence of health behaviors and QoL of young adult cancer survivors and their partners at both within- and between-person levels. This study is unique in its focus on the transition to cancer survivorship and its use of a measurement burst design. Results will guide the creation of a developmentally appropriate dyadic psychosocial or behavioral intervention that improves both young adult survivors' and their partners' health behaviors and QoL and potentially their physical health. International Registered Report Identifier (IRRID): DERR1-10.2196/53307 ", doi="10.2196/53307", url="https://www.researchprotocols.org/2024/1/e53307", url="http://www.ncbi.nlm.nih.gov/pubmed/38652520" } @Article{info:doi/10.2196/53117, author="Krakowczyk, Barbara Julia and Truijens, Femke and Teufel, Martin and Lalgi, Tania and Heinen, Jana and Schug, Caterina and Erim, Yesim and Pantf{\"o}rder, Michael and Graf, Johanna and B{\"a}uerle, Alexander", title="Evaluation of the e--Mental Health Intervention Make It Training From Patients' Perspectives: Qualitative Analysis Within the Reduct Trial", journal="JMIR Cancer", year="2024", month="Apr", day="9", volume="10", pages="e53117", keywords="psycho-oncology", keywords="eHealth", keywords="digital health", keywords="cancer", keywords="Reduct trial", keywords="oncology", abstract="Background: Make It Training is an e--mental health intervention designed for individuals with cancer that aims to reduce psychological distress and improve disease-related coping and quality of life. Objective: This study evaluated the experienced usefulness and usability of the web-based Make It Training intervention using a qualitative approach. Methods: In this study, semistructured interviews were conducted with participants at different cancer stages and with different cancer entities. All participants had previously taken part in the Reduct trial, a randomized controlled trial that assessed the efficacy of the Make It Training intervention. The data were coded deductively by 2 independent researchers and analyzed iteratively using thematic codebook analysis. Results: Analysis of experienced usefulness resulted in 4 themes (developing coping strategies to reduce psychological distress, improvement in quality of life, Make It Training vs traditional psychotherapy, and integration into daily life) with 11 subthemes. Analysis of experienced usability resulted in 3 themes (efficiency and accessibility, user-friendliness, and recommendations to design the Make It Training intervention to be more appealing) with 6 subthemes. Make It Training was evaluated as a user-friendly intervention helpful for developing functional coping strategies to reduce psychological distress and improve quality of life. The consensus regarding Make It Training was that it was described as a daily companion that integrates well into daily life and that it has the potential to be routinely implemented within oncological health care either as a stand-alone intervention or in addition to psychotherapy. Conclusions: e--Mental health interventions such as Make It Training can target both the prevention of mental health issues and health promotion. Moreover, they offer a cost-efficient and low-threshold option to receive psycho-oncological support. ", doi="10.2196/53117", url="https://cancer.jmir.org/2024/1/e53117", url="http://www.ncbi.nlm.nih.gov/pubmed/38592764" } @Article{info:doi/10.2196/47944, author="Schilstra, E. Clarissa and Ellis, J. Sarah and Cohen, Jennifer and Gall, Alana and Diaz, Abbey and Clarke, Kristina and Dumlao, Gadiel and Chard, Jennifer and Cumming, M. Therese and Davis, Esther and Dhillon, Haryana and Burns, Anne Mary and Docking, Kimberley and Koh, Eng-Siew and O'Reilly, Josephine and Sansom-Daly, M. Ursula and Shaw, Joanne and Speers, Nicole and Taylor, Natalie and Warne, Anthea and Fardell, E. Joanna", title="Exploring Web-Based Information and Resources That Support Adolescents and Young Adults With Cancer to Resume Study and Work: Environmental Scan Study", journal="JMIR Cancer", year="2024", month="Mar", day="25", volume="10", pages="e47944", keywords="adolescent", keywords="cancer", keywords="education", keywords="employment", keywords="information needs", keywords="oncology", keywords="online information", keywords="quality of life", keywords="resource", keywords="return to work", keywords="school", keywords="study", keywords="supportive resources", keywords="treatment", keywords="young adult", abstract="Background: Adolescents and young adults (AYAs) diagnosed with cancer experience physical, cognitive, and psychosocial effects from cancer treatment that can negatively affect their ability to remain engaged in education or work through cancer treatment and in the long term. Disengagement from education or work can have lasting implications for AYAs' financial independence, psychosocial well-being, and quality of life. Australian AYAs with cancer lack access to adequate specialist support for their education and work needs and report a preference for web-based support that they can access from anywhere, in their own time. However, it remains unclear what web-based resources exist that are tailored to support AYAs with cancer in reaching their educational or work goals. Objective: This study aimed to determine what web-based resources exist for Australian AYAs with cancer to (1) support return to education or work and (2) identify the degree to which existing resources are age-specific, cancer-specific, culturally inclusive, and evidence-based; are co-designed with AYAs; use age-appropriate language; and are easy to find. Methods: We conducted an environmental scan by searching Google with English search terms in August 2022 to identify information resources about employment and education for AYAs ever diagnosed with cancer. Data extraction was conducted in Microsoft Excel, and the following were assessed: understandability and actionability (using the Patient Education and Materials Tool), readability (using the Sydney Health Literacy Laboratory Health Literacy Editor), and whether the resource was easy to locate, evidence-based, co-designed with AYAs, and culturally inclusive of Aboriginal and Torres Strait Islander peoples. The latter was assessed using 7 criteria previously developed by members of the research team. Results: We identified 24 web-based resources, comprising 22 written text resources and 12 video resources. Most resources (21/24, 88\%) were published by nongovernmental organizations in Australia, Canada, the United States, and the United Kingdom. A total of 7 resources focused on education, 8 focused on work, and 9 focused on both education and work. The evaluation of resources demonstrated poor understandability and actionability. Resources were rarely evidence-based or co-designed by AYAs, difficult to locate on the internet, and largely not inclusive of Aboriginal and Torres Strait Islander populations. Conclusions: Although web-based resources for AYAs with cancer are often available through the websites of hospitals or nongovernmental organizations, this environmental scan suggests they would benefit from more evidence-based and actionable resources that are available in multiple formats (eg, text and audio-visual) and tailored to be age-appropriate and culturally inclusive. ", doi="10.2196/47944", url="https://cancer.jmir.org/2024/1/e47944", url="http://www.ncbi.nlm.nih.gov/pubmed/38526527" } @Article{info:doi/10.2196/48860, author="Davidson, Anne Cara and Booth, Richard and Jackson, Teresa Kimberley and Mantler, Tara", title="Toxic Relationships Described by People With Breast Cancer on Reddit: Topic Modeling Study", journal="JMIR Cancer", year="2024", month="Feb", day="23", volume="10", pages="e48860", keywords="breast cancer", keywords="intimate partner violence", keywords="meaning extraction method", keywords="Reddit", keywords="sentiment analysis", keywords="social media", keywords="social support", keywords="toxic relationships", keywords="topic modelling", abstract="Background: Social support is essential to promoting optimal health outcomes for women with breast cancer. However, an estimated 12\% of women with breast cancer simultaneously experience intimate partner violence (IPV; physical, psychological, or sexual abuse by an intimate partner). Women who experience IPV during breast cancer may lack traditional social support, and thus seek out alternative sources of support. Online community forums, such as Reddit, can provide accessible social connections within breast cancer--specific communities. However, it is largely unknown how women with breast cancer use Reddit to describe and seek support for experiences of IPV. Objective: This study aims to explore how patients with breast cancer describe toxic relationships with their partners and immediate family members on Reddit. Methods: This exploratory, cross-sectional, topic-modeling study analyzed textual data from 96 users in the r/breastcancer subreddit in February 2023. The meaning extraction method, inclusive of principal component analysis, was used to identify underlying components. Components were subjected to sentiment analysis and summative content analysis with emergent categorical development to articulate themes. Results: Seven themes emerged related to toxic relationships: (1) contextualizing storytelling with lymph nodes, (2) toxic behavior and venting emotions, (3) abandonment and abuse following diagnosis, (4) toxic relationships and social-related fears, (5) inner strength and navigating breast cancer over time, (6) assessing social relationships and interactions, and (7) community advice and support. Toxic relationships were commonly characterized by isolation, abandonment, and emotional abuse, which had profound emotional consequences for patients. Reddit facilitated anonymous venting about toxic relationships that helped patients cope with intense feelings and stress. Exchanging advice and support about navigating toxic relationships during breast cancer were core functions of the r/breastcancer community. Conclusions: Findings emphasized the value of Reddit as a source of social support for patients with breast cancer experiencing toxic relationships. Clinicians who understand that many patients with breast cancer experience toxic relationships and considerable psychological sequelae are better prepared to support their patients' holistic well-being. Further investigation of Reddit as a possible resource for advice, information, and support has the potential to help inform clinical practice and subsequently, patient health outcomes. ", doi="10.2196/48860", url="https://cancer.jmir.org/2024/1/e48860", url="http://www.ncbi.nlm.nih.gov/pubmed/38393769" } @Article{info:doi/10.2196/52338, author="Badaghi, Nasim and van Kruijsbergen, Mette and Speckens, Anne and Vil{\'e}, Jo{\"e}lle and Prins, Judith and Kelders, Saskia and Kwakkenbos, Linda", title="Group, Blended and Individual, Unguided Online Delivery of Mindfulness-Based Cognitive Therapy for People With Cancer: Feasibility Uncontrolled Trial", journal="JMIR Form Res", year="2024", month="Feb", day="21", volume="8", pages="e52338", keywords="cancer", keywords="eHeath", keywords="online interventions", keywords="mindfulness", keywords="psycho-oncology", keywords="qualitative research", keywords="oncology", keywords="CBT", keywords="blended", keywords="eMBCT", keywords="iCBT", keywords="cognitive therapy", keywords="unguided", keywords="psychotherapy", keywords="MBCT", keywords="co-creation", keywords="therapist", keywords="self-guided", keywords="peer-support", keywords="co-design", keywords="participatory", abstract="Background: Online mindfulness based cognitive therapy (eMBCT) has been shown to reduce psychological distress in people with cancer. However, this population has reported lack of support and asynchronous communication as barriers to eMBCT, resulting in higher nonadherence rates than with face-to-face MBCT. Using a co-creation process, we developed 2 formats of eMBCT: group, blended (combination of therapist-guided group and individual online sessions) and individual, unguided (individual, unguided online sessions only). Group, blended eMBCT offers peer support and guidance, whereas individual, unguided eMBCT offers flexibility and the possibility of large-scale implementation. Objective: The objective of this nonrandomized feasibility study was to assess aspects of feasibility of the group, blended and individual, unguided eMBCT interventions. Methods: Participants were people with cancer who chose between group, blended and individual, unguided eMBCT. Both intervention conditions followed the same 8-week eMBCT program, including an introductory session and a silent day (10 sessions total). All sessions for individual, unguided eMBCT occurred via the platform Minddistrict, whereas group, blended eMBCT consisted of 3 online videoconference sessions guided by a mindfulness teacher and 5 sessions via Minddistrict. We assessed the feasibility of the intervention quantitatively and qualitatively by evaluating its acceptability among participants. Additionally, we assessed limited efficacy by looking at the number of questionnaires participants completed pre- and postintervention. Results: We included 12 participants for each eMBCT condition. Participants in group, blended eMBCT completed, on average, 9.7 of 10 sessions, compared with an average 8.3 sessions for individual, unguided eMBCT (excluding dropouts). Of the 24 participants, 13 (54\%) agreed to be interviewed (5 unguided and 8 blended). Participants in both conditions reported positive experiences, including the convenience of not having to travel and the flexibility to choose when and where to participate. However, among the barriers for participation, participants in the group, blended condition reported a preference for more group sessions, and participants in the individual, unguided condition reported a lack of guidance. Additionally, for the group, blended condition, the effect sizes were small for all outcome measures (Hedges g range=0.01-0.36), except for fatigue, which had a moderate effect size (Hedges g=0.57). For the individual, unguided condition, the effect sizes were small for all outcome measures (Hedges g range=0.24-0.46), except for mindfulness skills (Hedges g=0.52) and engagement with the intervention (Hedges g=1.53). Conclusions: Participants in this study had a positive experience with group, blended and individual, unguided eMBCT. Based on the results from this study, we will adjust the intervention prior to conducting a full-scale randomized controlled trial to evaluate effectiveness; we will add 1 group session to the group, blended eMBCT using Zoom as the platform for the group sessions; and we will send reminders to participants to complete questionnaires. Trial Registration: ClinicalTrials.gov NCT05336916; https://clinicaltrials.gov/ct2/show/NCT05336916 ", doi="10.2196/52338", url="https://formative.jmir.org/2024/1/e52338", url="http://www.ncbi.nlm.nih.gov/pubmed/38381493" } @Article{info:doi/10.2196/48069, author="Kvale, Elizabeth and Phillips, Farya and Ghosh, Samiran and Lea, Jayanthi and Hoppenot, Claire and Costales, Anthony and Sunde, Jan and Badr, Hoda and Nwogu-Onyemkpa, Eberechi and Saleem, Nimrah and Ward, Rikki and Balasubramanian, Bijal", title="Survivorship Care for Women Living With Ovarian Cancer: Protocol for a Randomized Controlled Trial", journal="JMIR Res Protoc", year="2024", month="Feb", day="9", volume="13", pages="e48069", keywords="chronic survivorship", keywords="metastatic survivor", keywords="metavivor", keywords="ovarian cancer", keywords="persons living with cancer", keywords="quality of life", keywords="survivor", keywords="survivorship care", keywords="survivorship transition", abstract="Background: Ovarian cancer ranks 12th in cancer incidence among women in the United States and 5th among causes of cancer-related death. The typical treatment of ovarian cancer focuses on disease management, with little attention given to the survivorship needs of the patient. Qualitative work alludes to a gap in survivorship care; yet, evidence is lacking to support the delivery of survivorship care for individuals living with ovarian cancer. We developed the POSTCare survivorship platform with input from survivors of ovarian cancer and care partners as a means of delivering patient-centered survivorship care. This process is framed by the chronic care model and relevant behavioral theory. Objective: The overall goal of this study is to test processes of care that support quality of life (QOL) in survivorship. The specific aims are threefold: first, to test the efficacy of the POSTCare platform in supporting QOL, reducing depressive symptom burden, and reducing recurrence worry. In our second aim, we will examine factors that mediate the effect of the intervention. Our final aim focuses on understanding aspects of care platform design and delivery that may affect the potential for dissemination. Methods: We will enroll 120 survivors of ovarian cancer in a randomized controlled trial and collect data at 12 and 24 weeks. Each participant will be randomized to either the POSTCare platform or the standard of care process for survivorship. Our population will be derived from 3 clinics in Texas; each participant will have received some combination of treatment modalities; continued maintenance therapy is not exclusionary. Results: We will examine the impact of the POSTCare-O platform on QOL at 12 weeks after intervention as the primary end point. We will look at secondary outcomes, including depressive symptom burden, recurrence anxiety, and physical symptom burden. We will identify mediators important to the impact of the intervention to inform revisions of the intervention for subsequent studies. Data collection was initiated in November 2023 and will continue for approximately 2 years. We expect results from this study to be published in early 2026. Conclusions: This study will contribute to the body of survivorship science by testing a flexible platform for survivorship care delivery adapted for the specific survivorship needs of patients with ovarian cancer. The completion of this project will contribute to the growing body of science to guide survivorship care for persons living with cancer. Trial Registration: ClinicalTrials.gov NCT05752448; https://clinicaltrials.gov/study/NCT05752448 International Registered Report Identifier (IRRID): PRR1-10.2196/48069 ", doi="10.2196/48069", url="https://www.researchprotocols.org/2024/1/e48069", url="http://www.ncbi.nlm.nih.gov/pubmed/38335019" } @Article{info:doi/10.2196/53853, author="Zhao, Sunyan and Zhang, Jing and Wan, Haijun and Tao, Chenjie and Hu, Meng and Liang, Wei and Xu, Zhi and Xu, Bingguo and Zhang, Jiaying and Wang, Guoxin and Li, Ping and Lyu, Guangmei and Gong, Yongling", title="Role of Chinese Acupuncture in the Treatment for Chemotherapy-Induced Cognitive Impairment in Older Patients With Cancer: Protocol for a Randomized Controlled Trial", journal="JMIR Res Protoc", year="2024", month="Feb", day="8", volume="13", pages="e53853", keywords="older patients with cancer", keywords="cognitive impairment", keywords="chemobrain", keywords="Chinese medicine", keywords="electroacupuncture", abstract="Background: Older patients with cancer experience cognitive impairment and a series of neurocognitive symptoms known as chemobrain due to chemotherapy. Moreover, older populations are disproportionately affected by chemobrain and heightened negative mental health outcomes after cytotoxic chemical drug therapy. Chinese acupuncture is an emerging therapeutic option for chemotherapy-induced cognitive impairment in older patients with cancer, despite limited supporting evidence. Objective: Our study aims to directly contribute to the existing knowledge of this novel Chinese medicine mode in older patients with cancer enrolled at the Department of Oncology/Chinese Medicine, Nanjing First Hospital, China, thereby establishing the basis for further research. Methods: This study involves a 2-arm, prospective, randomized, assessor-blinded clinical trial in older patients with cancer experiencing chemobrain-related stress and treated with Chinese acupuncture from September 30, 2023, to December 31, 2025. We will enroll 168 older patients with cancer with clinically confirmed chemobrain. These participants will be recruited through screening by oncologists for Chinese acupuncture therapy and evaluation. Electroacupuncture will be performed by a registered practitioner of Chinese medicine. The electroacupuncture intervention will take about 30 minutes every session (2 sessions per week over 8 weeks). For the experimental group, the acupuncture points are mainly on the head, limbs, and abdomen, with a total of 6 pairs of electrically charged needles on the head, while for the control group, the acupuncture points are mainly on the head and limbs, with only 1 pair of electrically charged needles on the head. Results: Eligible participants will be randomized to the control group or the experimental group in 1:1 ratio. The primary outcome of this intervention will be the scores of the Montreal Cognitive Assessment. The secondary outcomes, that is, attentional function and working memory will be determined by the Digit Span Test scores. The quality of life of the patients and multiple functional assessments will also be evaluated. These outcomes will be measured at 2, 4, 6, and 8 weeks after the randomization. Conclusions: This efficacy trial will explore whether Chinese electroacupuncture can prevent chemobrain, alleviate the related symptoms, and improve the quality of life of older patients with cancer who are undergoing or are just going to begin chemotherapy. The safety of this electroacupuncture intervention for such patients will also be evaluated. Data from this study will be used to promote electroacupuncture application in patients undergoing chemotherapy and support the design of further real-world studies. Trial Registration: ClinicalTrials.gov NCT05876988; https://clinicaltrials.gov/ct2/show/NCT05876988 International Registered Report Identifier (IRRID): DERR1-10.2196/53853 ", doi="10.2196/53853", url="https://www.researchprotocols.org/2024/1/e53853", url="http://www.ncbi.nlm.nih.gov/pubmed/38329790" } @Article{info:doi/10.2196/46116, author="Zhang, Yingzi and Flannery, Marie and Zhang, Zhihong and Underhill-Blazey, Meghan and Bobry, Melanie and Leblanc, Natalie and Rodriguez, Darcey and Zhang, Chen", title="Digital Health Psychosocial Intervention in Adult Patients With Cancer and Their Families: Systematic Review and Meta-Analysis", journal="JMIR Cancer", year="2024", month="Feb", day="5", volume="10", pages="e46116", keywords="cancer", keywords="anxiety", keywords="decision-making", keywords="depression", keywords="digital health", keywords="distress", keywords="family", keywords="mental health", keywords="mortality", keywords="psychosocial intervention", keywords="quality of life", abstract="Background: Patients with cancer and their families often experience significant distress and deterioration in their quality of life. Psychosocial interventions were used to address patients' and families' psychosocial needs. Digital technology is increasingly being used to deliver psychosocial interventions to patients with cancer and their families. Objective: A systematic review and meta-analysis were conducted to review the characteristics and effectiveness of digital health interventions on psychosocial outcomes in adult patients with cancer and their family members. Methods: Databases (PubMed, Cochrane Library, Web of Science, Embase, CINAHL, PsycINFO, ProQuest Dissertations and Theses Global, and ClinicalTrials.gov) were searched for randomized controlled trials (RCTs) or quasi-experimental studies that tested the effects of a digital intervention on psychosocial outcomes. The Joanna Briggs Institute's critical appraisal checklists for RCTs and quasi-experimental studies were used to assess quality. Standardized mean differences (ie, Hedges g) were calculated to compare intervention effectiveness. Subgroup analysis was planned to examine the effect of delivery mode, duration of the intervention, type of control, and dosage on outcomes using a random-effects modeling approach. Results: A total of 65 studies involving 10,361 patients (mean 159, SD 166; range 9-803 patients per study) and 1045 caregivers or partners (mean 16, SD 54; range 9-244 caregivers or partners per study) were included in the systematic review. Of these, 32 studies were included in a meta-analysis of the effects of digital health interventions on quality of life, anxiety, depression, distress, and self-efficacy. Overall, the RCT studies' general quality was mixed (applicable scores: mean 0.61, SD 0.12; range 0.38-0.91). Quasi-experimental studies were generally of moderate to high quality (applicable scores: mean 0.75, SD 0.08; range 0.63-0.89). Psychoeducation and cognitive-behavioral strategies were commonly used. More than half (n=38, 59\%) did not identify a conceptual or theoretical framework. Most interventions were delivered through the internet (n=40, 62\%). The median number of intervention sessions was 6 (range 1-56). The frequency of the intervention was highly variable, with self-paced (n=26, 40\%) being the most common. The median duration was 8 weeks. The meta-analysis results showed that digital psychosocial interventions were effective in improving patients' quality of life with a small effect size (Hedges g=0.05, 95\% CI --0.01 to 0.10; I2=42.7\%; P=.01). The interventions effectively reduced anxiety and depression symptoms in patients, as shown by moderate effect sizes on Hospital Anxiety and Depression Scale total scores (Hedges g=--0.72, 95\% CI --1.89 to 0.46; I2=97.6\%; P<.001). Conclusions: This study demonstrated the effectiveness of digital health interventions on quality of life, anxiety, and depression in patients. Future research with a clear description of the methodology to enhance the ability to perform meta-analysis is needed. Moreover, this study provides preliminary evidence to support the integration of existing digital health psychosocial interventions in clinical practice. Trial Registration: PROSPERO CRD42020189698; https://www.crd.york.ac.uk/prospero/display\_record.php?RecordID=189698 ", doi="10.2196/46116", url="https://cancer.jmir.org/2024/1/e46116", url="http://www.ncbi.nlm.nih.gov/pubmed/38315546" } @Article{info:doi/10.2196/54284, author="Park, Y. Susanna and Yourell, Jacqlyn and McAlister, L. Kelsey and Huberty, Jennifer", title="Exploring Generation Z and Young Millennials' Perspectives of a Spiritual Self-Care App and Their Spiritual Identity (Skylight): Qualitative Semistructured Interview Study", journal="JMIR Form Res", year="2023", month="Dec", day="28", volume="7", pages="e54284", keywords="Gen Z", keywords="Generation Z", keywords="millennial", keywords="GenZennials", keywords="millennials", keywords="young adult", keywords="young adults", keywords="spirituality", keywords="spiritual", keywords="self-care", keywords="mental health", keywords="sleep", keywords="mobile health", keywords="app", keywords="apps", keywords="digital health", keywords="experience", keywords="experiences", keywords="attitude", keywords="attitudes", keywords="opinion", keywords="perception", keywords="perceptions", keywords="perspective", keywords="perspectives", keywords="acceptance", keywords="interview", keywords="interviews", keywords="thematic analysis", keywords="mobile phone", abstract="Background: Generation Z and young millennials (ages 18-35 years), collectively referred to as GenZennials, are connected to technology and the internet like no other generation before them. This has mental health implications, such as increased rates of anxiety and stress. Recent research has shown that app-based mental health interventions can be useful to address such mental health concerns. However, spirituality is an untapped resource, especially since GenZennials largely identify as spiritual and already integrate spiritual practices into their self-care. Objective: There were four objectives to this study: (1) comprehensively explore reasons why GenZennials use a spiritual self-care app (ie, Skylight; Radiant Foundation), (2) understand how GenZennials identify spiritually, (3) understand the app's relevance to GenZennials, and (4) gather feedback and suggestions to improve the app. Methods: Semistructured interviews were conducted with 23 GenZennials (ages 18-35 years; mean 28.7, SD 5.0 years; n=20, 87\% female) who used the Skylight app. Interviews were 30 to 60 minutes and conducted on Zoom. Thematic analysis was used to analyze interviews. Results: Five major categories emerged from the analysis, each encompassing one to several themes: (1) reasons for using the Skylight app, (2) content favorites, (3) defining spiritual identity, (4) relevance to GenZennials, and (5) overall improvement recommendations. Participants used the app for various reasons including to relax, escape, or ground themselves; improve mood; and enhance overall health and wellness. Participants also cited the app's variety of content offerings and its free accessibility as their primary reasons for using it. Most participants identified themselves as solely spiritual (8/23/35\%) among the options provided (ie, spiritual or religious or both), and they appreciated the app's inclusive content. Participants felt that the app was relevant to their generation as it offered modern content (eg, spiritual self-care activities and short content). Participants recommended adding more personalization capabilities, content, and representation to the app. Conclusions: This is the first study to qualitatively explore GenZennials' perspectives and the use of a spiritual self-care app. Our findings should inform the future creation and improvement of spiritual self-care apps aimed at cultivating GenZennials' spiritual and mental well-being. Future research is warranted to examine the effects of using a spiritual self-care app on GenZennial mental health. ", doi="10.2196/54284", url="https://formative.jmir.org/2023/1/e54284", url="http://www.ncbi.nlm.nih.gov/pubmed/38064199" } @Article{info:doi/10.2196/49735, author="Bentsen, Line and Hangh{\o}j, Signe and Hjerming, Maiken and Bergmann, Buur Mette and Thycosen, Marianne and Borup, Anette and Larsen, Camilla and Pappot, Helle", title="Development of Quality of Life in Adolescents and Young Adults With Cancer Using a Patient Support Smartphone App: Prepost Interventional Study", journal="JMIR Cancer", year="2023", month="Dec", day="4", volume="9", pages="e49735", keywords="adolescent", keywords="young adult", keywords="cancer", keywords="quality of life", keywords="eHealth", keywords="smartphone application", keywords="application", keywords="development", keywords="interventional study", keywords="youth", keywords="grief", keywords="symptom tracker", keywords="social community", keywords="Denmark", keywords="physical functioning", keywords="treatment", keywords="mobile phone", abstract="Background: Adolescents and young adults often experience existential concerns in addition to side effects during a cancer trajectory, which they often carry alone. Thus, cohesion with other adolescents and young adults with cancer is essential but difficult due to the relatively small, widely dispersed nationwide population. In cocreation, a smartphone app has been developed and includes an information bank, a symptom tracker, and a social community platform, aiming to improve the quality of life (QoL) in this patient group. Objective: This nationwide, multicenter study aimed to investigate the QoL in adolescents and young adults undergoing a cancer trajectory as they used the app for 6 weeks. Methods: Via youth support initiatives, participants were recruited from hospitals in all regions of Denmark. Inclusion criteria were patients with cancer aged 15-29 years who either initiated any cancer treatment or started follow-up after cancer treatment within 30 days. Participants used the adolescents and young adults cancer app for 6 weeks. Before and after the 6 weeks of app use, they completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30). The participants were divided into a treatment and a follow-up group for analysis. A high score for a functional scale or the global health or overall QoL represents a high or healthy level of functioning or high QoL, respectively; however, a high score for a symptom scale or item represents a high level of symptomatology. Results: Overall, 81 participants were recruited. However, 4 participants did not answer the questionnaire and 6 participants did not use the app. In the treatment group (n=36), significant improvement was found in 2 domains: ``Role functioning'' (baseline median 33.33, IQR 16.67-83.33 vs 6 weeks median 66.67, IQR 33.33-83.33;?P=.04) and ``Pain'' (baseline median 33.33, IQR 16.67-50.00 vs 6 weeks median 16.67, IQR 0.00-33.33;?P=.04). The ``Global health/Overall QoL'' scale remained stable (baseline median 58.33, IQR 45.83-77.08 vs 6 weeks median 62.50, IQR 41.67-75.00;?P=.25). In the follow-up group (n=35), significant improvement was found in 3 domains: ``Physical functioning'' (baseline median 79.23, IQR 73.33-93.33 vs 6 weeks median 82.86, IQR 73.33-100.00;?P=.03), ``Cognitive functioning'' (baseline median 62.38, IQR 50.00-83.33 vs 6 weeks median 69.52, IQR 50.00-100.00;?P=.02), and ``Social functioning'' (baseline median 76.19, IQR 50.00-100.00 vs 6 weeks median 85.71, IQR 83.33-100.00;?P=.05), as well as in the ``Global health/Overall QoL'' scale (baseline median 57.14, IQR 83.33-100.00 vs 6 weeks median 75.0, IQR 62.91-85.73;?P<.001). Conclusions: In this study, we found an improvement in specific QoL scales for both participants in treatment and follow-up when using the app for 6 weeks. The global health or overall QoL score improved significantly in the follow-up group. In the treatment group, it remained stable. International Registered Report Identifier (IRRID): RR2-10.2196/10098 ", doi="10.2196/49735", url="https://cancer.jmir.org/2023/1/e49735", url="http://www.ncbi.nlm.nih.gov/pubmed/38048144" } @Article{info:doi/10.2196/42123, author="Tsiouris, Angeliki and Mayer, Anna and Wiltink, J{\"o}rg and Ruckes, Christian and Beutel, E. Manfred and Zwerenz, R{\"u}diger", title="Recruitment of Patients With Cancer for a Clinical Trial Evaluating a Web-Based Psycho-Oncological Intervention: Secondary Analysis of a Diversified Recruitment Strategy in a Randomized Controlled Trial", journal="JMIR Cancer", year="2023", month="Nov", day="27", volume="9", pages="e42123", keywords="psycho-oncology", keywords="cancer", keywords="recruitment", keywords="social media", keywords="web-based interventions", keywords="web-based recruitment", abstract="Background: Participant recruitment poses challenges in psycho-oncological intervention research, such as psycho-oncological web-based intervention studies. Strict consecutive recruitment in clinical settings provides important methodological benefits but is often associated with low response rates and reduced practicability and ecological validity. In addition to preexisting recruitment barriers, the protective measures owing to the COVID-19 pandemic restricted recruitment activities in the clinical setting since March 2020. Objective: This study aims to outline the recruitment strategy for a randomized controlled trial evaluating the unguided emotion-based psycho-oncological online self-help (epos), which combined traditional and web-based recruitment. Methods: We developed a combined recruitment strategy including traditional (eg, recruitment in clinics, medical practices, cancer counseling centers, and newspapers) and web-based recruitment (Instagram, Facebook, and web pages). Recruitment was conducted between May 2020 and September 2021. Eligible participants for this study were adult patients with any type of cancer who were currently receiving treatment or in posttreatment care. They were also required to have a good command of the German language and access to a device suitable for web-based interventions, such as a laptop or computer. Results: We analyzed data from 304 participants who were enrolled in a 17-month recruitment period using various recruitment strategies. Web-based and traditional recruitment strategies led to comparable numbers of participants (151/304, 49.7\% vs 153/304, 50.3\%). However, web-based recruitment required much less effort. Regardless of the recruitment strategy, the total sample did not accurately represent patients with cancer currently undergoing treatment for major types of cancer in terms of various sociodemographic characteristics, including but not limited to sex and age. However, among the web-recruited study participants, the proportion of female participants was even higher (P<.001), the mean age was lower (P=.005), private internet use was higher (on weekdays: P=.007; on weekends: P=.02), and the number of those who were currently under treatment was higher (P=.048). Other demographic and medical characteristics revealed no significant differences between the groups. The majority of participants registered as self-referred (236/296, 79.7\%) instead of having followed the recommendation of or study invitation from a health care professional. Conclusions: The combined recruitment strategy helped overcome general and COVID-19--specific recruitment barriers and provided the targeted participant number. Social media recruitment was the most efficient individual recruitment strategy for participant enrollment. Differences in some demographic and medical characteristics emerged, which should be considered in future analyses. Implications and recommendations for social media recruitment based on personal experiences are presented. Trial Registration: German Clinical Trials Register DRKS00021144; https://drks.de/search/en/trial/DRKS00021144 International Registered Report Identifier (IRRID): RR2-10.1016/j.invent.2021.100410 ", doi="10.2196/42123", url="https://cancer.jmir.org/2023/1/e42123", url="http://www.ncbi.nlm.nih.gov/pubmed/38010774" } @Article{info:doi/10.2196/48761, author="Marks, Asher and Garbatini, Amanda and Hieftje, Kimberly and Puthenpura, Vidya and Weser, Veronica and Fernandes, F. Claudia-Santi", title="Use of Immersive Virtual Reality Spaces to Engage Adolescent and Young Adult Patients With Cancer in Therapist-Guided Support Groups: Protocol for a Pre-Post Study", journal="JMIR Res Protoc", year="2023", month="Nov", day="9", volume="12", pages="e48761", keywords="cancer", keywords="virtual reality", keywords="support groups", keywords="peer support", keywords="adolescent", keywords="young adult", keywords="resilience", keywords="adolescents and young adults", keywords="oncology", keywords="therapist-guided support", keywords="social isolation", keywords="support system", keywords="psychosocial support", keywords="barrier", keywords="quality of life", abstract="Background: For adolescents and young adults, a cancer diagnoses can magnify feelings of social isolation at an inherently vulnerable developmental stage. Prior studies have highlighted the importance of peer groups during cancer treatment. Support groups help foster connection and resilience, but patients find in-person participation difficult due to a variety of factors. Additionally, physical changes brought on by cancer makes these patients hesitant to meet in person. The COVID-19 pandemic magnified these difficulties. Virtual reality (VR) allows for the creation of a therapist-curated, computer-generated social space that potentially enables support groups for this population. Objective: This protocol describes a pilot study examining the efficacy, feasibility, and acceptability of a social VR support group intervention for adolescent and young adult patients with cancer. Methods: We approached 20 participants aged 17-20 years, and 16 agreed to participate. Moreover, 1 participant dropped out due to hospitalization. Participants attended virtual, professionally facilitated support groups using Meta Quest VR headsets. The groups consisted of 4 participants and 1 facilitator, amounting to a total of 22 individual sessions. Each session lasted 45-60 minutes and took place weekly for 4-6 weeks. The primary aim of this study was to collect quantitative and qualitative data on the feasibility and acceptability of the intervention. Feasibility was measured through session participation rates and overall retention rates. The acceptability of the intervention was explored through brief in-person interviews with participants at the end of the final intervention session. The secondary aim of this study was to collect data on the preliminary efficacy of the intervention in decreasing symptoms of participant depression and anxiety and increasing positive affect and resiliency. Results: In total, 15 patients aged 17-20 years participated in 22 sessions between November 5, 2019, and July 8, 2021. The median age was 19 (IQR 17-20) years. Overall, 10 (62\%) participants identified as male, 5 (31\%) as female, and 1 (6\%) as transgender female. Furthermore, 5 (31\%) participants identified as Hispanic, 1 (6\%) identified as non-Hispanic Asian, 3 (19\%) identified as non-Hispanic Black, 6 (38\%) identified as non-Hispanic White, and 1 (6\%) identified as other race or ethnicity. Hematologic malignancies or bone marrow failure was the most common diagnosis (8/16, 50\%). The mean attendance rate was 72.8\% (SD 25.7\%) and retention was 86.7\% (SD 0.35\%). Moreover, 45\% (10/22) of sessions had to be postponed by a week or more due to unexpected participant scheduling issues. Conclusions: The use of VR to deliver psychosocial support for adolescents and young adults with cancer may reduce common barriers associated with attending in-person peer support groups while improving quality-of-life measures. The data from this study will inform future studies focused on conducting VR support groups in other rare disease populations, including older adults with cancer. International Registered Report Identifier (IRRID): DERR1-10.2196/48761 ", doi="10.2196/48761", url="https://www.researchprotocols.org/2023/1/e48761", url="http://www.ncbi.nlm.nih.gov/pubmed/37943596" } @Article{info:doi/10.2196/48329, author="M{\"u}ller, Fabiola and van Dongen, Sophie and van Woezik, Rosalie and Tibosch, Marijke and Tuinman, A. Marrit and Schellekens, J. Melanie P. and Laurenceau, Jean-Philippe and van der Lee, Marije and Hagedoorn, Mari{\"e}t", title="A Web-Based Mindfulness-Based Cognitive Therapy for Couples Dealing With Chronic Cancer-Related Fatigue: Protocol for a Single-Arm Pilot Trial", journal="JMIR Res Protoc", year="2023", month="Nov", day="6", volume="12", pages="e48329", keywords="acceptability", keywords="cancer", keywords="chronic cancer-related fatigue", keywords="couple intervention", keywords="eMBCT", keywords="fatigue", keywords="feasibility", keywords="partners", keywords="pilot trial", keywords="web-based mindfulness-based cognitive therapy", abstract="Background: Chronic fatigue is a common symptom among patients who have been treated for cancer. Current psychosocial interventions typically target the patient alone, despite growing evidence suggesting that a couples' approach can increase and broaden the efficacy of an intervention. Therefore, based on an existing web-based mindfulness-based cognitive therapy for patients, the couple intervention COMPANION was developed. Objective: The primary objectives of this study are to determine the acceptability of COMPANION and its potential efficacy in reducing fatigue in patients with cancer. Our secondary objectives are to examine the feasibility of the trial procedures and the potential working mechanisms of the couple intervention. Methods: We will conduct a single-arm pilot trial for couples (ie, patients with cancer with chronic fatigue and their partners). All couples are allocated to the web-based couple intervention that consists of psychoeducation, mindfulness, and cognitive-behavioral exercises. The 9 sessions of the intervention are supervised remotely by a trained therapist. Patients and partners will complete questionnaires before starting the intervention (T0), 2 weeks after completing the intervention (T1), and 1 month after T1 (T2). They will also fill out weekly diaries during the intervention period. A subsample of patients (n?5) and partners (n?5) as well as all the therapists providing COMPANION will participate in the final focus groups. Benchmark values have been defined to determine the acceptability (ie, ?60\% of couples complete the intervention and/or ?70\% of the participants are satisfied with the intervention) and potential efficacy (ie, a significant improvement in fatigue and/or a clinically relevant improvement in fatigue in 45\% of the patients between T0 and T1) of the intervention. The trial procedures are deemed feasible if an average of at least three couples are included per recruiting month and/or adherence to the assessments is at least 65\% for T1 and the diaries and 60\% for T2. To establish potential working mechanisms, changes in affect, sleep, catastrophizing, partner communication and interactions, self-efficacy, mindfulness, and closeness will be examined. Quantitative outcomes will be interpreted along with the results from the focus groups. Results: Data collection is expected to be completed by March 2024. Conclusions: This pilot trial will test the first web-based mindfulness-based cognitive therapy for couples targeting chronic cancer-related fatigue. Findings will indicate whether proceeding with a randomized controlled trial is warranted. Trial Registration: ClinicalTrials.gov NCT05636696; https://clinicaltrials.gov/study/NCT05636696 International Registered Report Identifier (IRRID): DERR1-10.2196/48329 ", doi="10.2196/48329", url="https://www.researchprotocols.org/2023/1/e48329", url="http://www.ncbi.nlm.nih.gov/pubmed/37930767" } @Article{info:doi/10.2196/51605, author="Waters, R. Austin and Turner, Cindy and Easterly, W. Caleb and Tovar, Ida and Mulvaney, Megan and Poquadeck, Matt and Johnston, Hailey and Ghazal, V. Lauren and Rains, A. Stephen and Cloyes, G. Kristin and Kirchhoff, C. Anne and Warner, L. Echo", title="Exploring Online Crowdfunding for Cancer-Related Costs Among LGBTQ+ (Lesbian, Gay, Bisexual, Transgender, Queer, Plus) Cancer Survivors: Integration of Community-Engaged and Technology-Based Methodologies", journal="JMIR Cancer", year="2023", month="Oct", day="30", volume="9", pages="e51605", keywords="community-engaged", keywords="LGBT", keywords="SGM", keywords="financial burden", keywords="crowdfunding", keywords="sexual monitory", keywords="sexual minorities", keywords="crowdfund", keywords="fund", keywords="funding", keywords="fundraising", keywords="fundraise", keywords="engagement", keywords="finance", keywords="financial", keywords="campaign", keywords="campaigns", keywords="web scraping", keywords="cancer", keywords="oncology", keywords="participatory", keywords="dictionary", keywords="term", keywords="terms", keywords="terminology", keywords="terminologies", keywords="classification", keywords="underrepresented", keywords="equity", keywords="inequity", keywords="inequities", keywords="cost", keywords="costs", abstract="Background: Cancer survivors frequently experience cancer-related financial burdens. The extent to which Lesbian, Gay, Bisexual, Transgender, Queer, Plus (LGBTQ+) populations experience cancer-related cost-coping behaviors such as crowdfunding is largely unknown, owing to a lack of sexual orientation and gender identity data collection and social stigma. Web-scraping has previously been used to evaluate inequities in online crowdfunding, but these methods alone do not adequately engage populations facing inequities. Objective: We describe the methodological process of integrating technology-based and community-engaged methods to explore the financial burden of cancer among LGBTQ+ individuals via online crowdfunding. Methods: To center the LGBTQ+ community, we followed community engagement guidelines by forming a study advisory board (SAB) of LGBTQ+ cancer survivors, caregivers, and professionals who were involved in every step of the research. SAB member engagement was tracked through quarterly SAB meeting attendance and an engagement survey. We then used web-scraping methods to extract a data set of online crowdfunding campaigns. The study team followed an integrated technology-based and community-engaged process to develop and refine term dictionaries for analyses. Term dictionaries were developed and refined in order to identify crowdfunding campaigns that were cancer- and LGBTQ+-related. Results: Advisory board engagement was high according to metrics of meeting attendance, meeting participation, and anonymous board feedback. In collaboration with the SAB, the term dictionaries were iteratively edited and refined. The LGBTQ+ term dictionary was developed by the study team, while the cancer term dictionary was refined from an existing dictionary. The advisory board and analytic team members manually coded against the term dictionary and performed quality checks until high confidence in correct classification was achieved using pairwise agreement. Through each phase of manual coding and quality checks, the advisory board identified more misclassified campaigns than the analytic team alone. When refining the LGBTQ+ term dictionary, the analytic team identified 11.8\% misclassification while the SAB identified 20.7\% misclassification. Once each term dictionary was finalized, the LGBTQ+ term dictionary resulted in a 95\% pairwise agreement, while the cancer term dictionary resulted in an 89.2\% pairwise agreement. Conclusions: The classification tools developed by integrating community-engaged and technology-based methods were more accurate because of the equity-based approach of centering LGBTQ+ voices and their lived experiences. This exemplar suggests integrating community-engaged and technology-based methods to study inequities is highly feasible and has applications beyond LGBTQ+ financial burden research. ", doi="10.2196/51605", url="https://cancer.jmir.org/2023/1/e51605", url="http://www.ncbi.nlm.nih.gov/pubmed/37902829" } @Article{info:doi/10.2196/48719, author="B{\o}r{\o}sund, Elin and Meland, Anders and Eriksen, R. Hege and Rygg, M. Christine and Ursin, Giske and Solberg Nes, Lise", title="Digital Cognitive Behavioral- and Mindfulness-Based Stress-Management Interventions for Survivors of Breast Cancer: Development Study", journal="JMIR Form Res", year="2023", month="Sep", day="19", volume="7", pages="e48719", keywords="cancer", keywords="stress management", keywords="mindfulness", keywords="cognitive behavioral therapy", keywords="digital", keywords="eHealth", keywords="mHealth", keywords="app", keywords="user-driven development", keywords="usability", abstract="Background: Psychosocial stress-management interventions can reduce stress and distress and improve the quality of life for survivors of cancer. As these in-person interventions are not always offered or accessible, evidence-informed digital stress-management interventions may have the potential to improve outreach of psychosocial support for survivors of cancer. Few such digital interventions exist so far, few if any have been developed specifically for survivors of breast cancer, and few if any have attempted to explore more than 1 distinct type of intervention framework. Objective: This study aimed to develop 2 digital psychosocial stress-management interventions for survivors of breast cancer; 1 cognitive behavioral therapy-based intervention (CBI), and 1 mindfulness-based intervention (MBI). Methods: The development of the CBI and MBI interventions originated from the existing StressProffen program, a digital stress-management intervention program for survivors of cancer, based on a primarily cognitive behavioral therapeutic concept. Development processes entailed a multidisciplinary design approach and were iteratively conducted in close collaboration between key stakeholders, including experts within psychosocial oncology, cancer epidemiology, stress-management, and eHealth as well as survivors of breast cancer and health care providers. Core psychosocial oncology stress-management and cancer epidemiology experts first conducted a series of workshops to identify cognitive behavioral and mindfulness specific StressProffen content, overlapping psychoeducational content, and areas where development and incorporation of new material were needed. Following the program content adaptation and development phase, phases related to user testing of new content and technical, privacy, security, and ethical aspects and adjustments ensued. Intervention content for the distinct CBI and MBI interventions was refined in iterative user-centered design processes and adjusted to electronic format through stakeholder-centered iterations. Results: For the CBI version, the mindfulness-based content of the original StressProffen was removed, and for the MBI version, cognitive behavioral content was removed. Varying degrees of new content were created for both versions, using a similar layout as for the original StressProffen program. New content and new exercises in particular were tested by survivors of breast cancer and a project-related editorial team, resulting in subsequent user centered adjustments, including ensuring auditory versions and adequate explanations before less intuitive sections. Other improvements included implementing a standard closing sentence to round off every exercise, and allowing participants to choose the length of some of the mindfulness exercises. A legal disclaimer and a description of data collection, user rights and study contact information were included to meet ethical, privacy, and security requirements. Conclusions: This study shows how theory specific (ie, CBI and MBI) digital stress-management interventions for survivors of breast cancer can be developed through extensive collaborations between key stakeholders, including scientists, health care providers, and survivors of breast cancer. Offering a variety of evidence-informed stress-management approaches may potentially increase interest for outreach and impact of psychosocial interventions for survivors of cancer. International Registered Report Identifier (IRRID): RR2-10.2196/47195 ", doi="10.2196/48719", url="https://formative.jmir.org/2023/1/e48719", url="http://www.ncbi.nlm.nih.gov/pubmed/37725424" } @Article{info:doi/10.2196/44320, author="Wennerberg, Camilla and Hellstr{\"o}m, Amanda and Schildmeijer, Kristina and Ekstedt, Mirjam", title="Effects of Web-Based and Mobile Self-Care Support in Addition to Standard Care in Patients After Radical Prostatectomy: Randomized Controlled Trial", journal="JMIR Cancer", year="2023", month="Sep", day="6", volume="9", pages="e44320", keywords="eHealth", keywords="linear mixed model", keywords="prostatic neoplasms", keywords="radical prostatectomy", keywords="randomized controlled trial", keywords="self-care", keywords="telemedicine", keywords="mobile health", keywords="mHealth", keywords="prostate cancer", keywords="sexual dysfunction", keywords="urinary incontinence", keywords="web-based", keywords="pelvic exercise", keywords="physical activity", abstract="Background: Prostate cancer is a common form of cancer that is often treated with radical prostatectomy, which can leave patients with urinary incontinence and sexual dysfunction. Self-care (pelvic floor muscle exercises and physical activity) is recommended to reduce the side effects. As more and more men are living in the aftermath of treatment, effective rehabilitation support is warranted. Digital self-care support has the potential to improve patient outcomes, but it has rarely been evaluated longitudinally in randomized controlled trials. Therefore, we developed and evaluated the effects of digital self-care support (electronic Patient Activation in Treatment at Home [ePATH]) on prostate-specific symptoms. Objective: This study aimed to investigate the effects of web-based and mobile self-care support on urinary continence, sexual function, and self-care, compared with standard care, at 1, 3, 6, and 12 months after radical prostatectomy. Methods: A multicenter randomized controlled trial with 2 study arms was conducted, with the longitudinal effects of additional digital self-care support (ePATH) compared with those of standard care alone. ePATH was designed based on the self-determination theory to strengthen patients' activation in self-care through nurse-assisted individualized modules. Men planned for radical prostatectomy at 3 county hospitals in southern Sweden were included offline and randomly assigned to the intervention or control group. The effects of ePATH were evaluated for 1 year after surgery using self-assessed questionnaires. Linear mixed models and ordinal regression analyses were performed. Results: This study included 170 men (85 in each group) from January 2018 to December 2019. The participants in the intervention and control groups did not differ in their demographic characteristics. In the intervention group, 64\% (53/83) of the participants used ePATH, but the use declined over time. The linear mixed model showed no substantial differences between the groups in urinary continence ($\beta$=?5.60; P=.09; 95\% CI ?12.15 to ?0.96) or sexual function ($\beta$=?.12; P=.97; 95\% CI ?7.05 to ?6.81). Participants in the intervention and control groups did not differ in physical activity (odds ratio 1.16, 95\% CI 0.71-1.89; P=.57) or pelvic floor muscle exercises (odds ratio 1.51, 95\% CI 0.86-2.66; P=.15). Conclusions: ePATH did not affect postoperative side effects or self-care but reflected how this support may work in typical clinical conditions. To complement standard rehabilitation, digital self-care support must be adapted to the context and individual preferences for use and effect. Trial Registration: ISRCTN Registry ISRCTN18055968; https://www.isrctn.com/ISRCTN18055968 International Registered Report Identifier (IRRID): RR2-10.2196/11625 ", doi="10.2196/44320", url="https://cancer.jmir.org/2023/1/e44320", url="http://www.ncbi.nlm.nih.gov/pubmed/37672332" } @Article{info:doi/10.2196/45198, author="Memenga, Paula and Baumann, Eva and Luetke Lanfer, Hanna and Reifegerste, Doreen and Geulen, Julia and Weber, Winja and Hahne, Andrea and M{\"u}ller, Anne and Weg-Remers, Susanne", title="Intentions of Patients With Cancer and Their Relatives to Use a Live Chat on Familial Cancer Risk: Results From a Cross-Sectional Web-Based Survey", journal="J Med Internet Res", year="2023", month="Aug", day="28", volume="25", pages="e45198", keywords="live chat", keywords="technology acceptance", keywords="familial cancer risk", keywords="Extended Unified Theory of Acceptance and Use of Technology", keywords="cancer information seeking", keywords="patients and relatives with cancer", keywords="patients with cancer", keywords="cancer risk", keywords="genetic testing", keywords="diagnosis", keywords="severity", keywords="cross-sectional survey", abstract="Background: An important prerequisite for actively engaging in cancer prevention and early detection measures, which is particularly recommended in cases of familial cancer risk, is the acquisition of information. Although a lot of cancer information is available, not all social groups are equally well reached because information needs and communicative accessibility differ. Previous research has shown that a live chat service provided by health professionals could be an appropriate, low-threshold format to meet individual information needs on sensitive health topics such as familial cancer risk. An established German Cancer Information Service is currently developing such a live chat service. As it is only worthwhile if accepted by the target groups, formative evaluation is essential in the course of the chat service's development and implementation. Objective: This study aimed to explore the acceptance of a live chat on familial cancer risk by patients with cancer and their relatives (research question [RQ] 1) and examine the explanatory power of factors associated with their intentions to use such a service (RQ2). Guided by the Extended Unified Theory of Acceptance and Use of Technology (UTAUT2), we examined the explanatory power of the following UTAUT2 factors: performance expectancy, effort expectancy, social influence, facilitating conditions, and habit, supplemented by perceived information insufficiency, perceived susceptibility, perceived severity, and cancer diagnosis as additional factors related to information seeking about familial cancer. Methods: We conducted a cross-sectional survey via a German web-based access panel in March 2022 that was stratified by age, gender, and education (N=1084). The participants are or have been diagnosed with cancer themselves (n=144) or have relatives who are or have been affected (n=990). All constructs were measured with established scales. To answer RQ1, descriptive data (mean values and distribution) were used. For RQ2, a blockwise multiple linear regression analysis was conducted. Results: Overall, 32.7\% of participants were (rather) willing, 28.9\% were undecided, and 38.4\% were (rather) not willing to use a live chat on familial cancer risk in the future. A multiple linear regression analysis explained 47\% of the variance. It revealed that performance expectancy, social influence, habit, perceived susceptibility, and perceived severity were positively associated with the intention to use a live chat on familial cancer risk. Effort expectancy, facilitating conditions, information insufficiency, and cancer diagnosis were not related to usage intentions. Conclusions: A live chat seems promising for providing information on familial cancer risk. When promoting the service, the personal benefits should be addressed in particular. UTAUT2 is an effective theoretical framework for explaining live chat usage intentions and does not need to be extended in the context of familial cancer risk. ", doi="10.2196/45198", url="https://www.jmir.org/2023/1/e45198", url="http://www.ncbi.nlm.nih.gov/pubmed/37639311" } @Article{info:doi/10.2196/38515, author="Meinlschmidt, Gunther and Grossert, Astrid and Meffert, Cornelia and Roemmel, Noa and Hess, Viviane and Rochlitz, Christoph and Pless, Miklos and Hunziker, Sabina and W{\"o}ssmer, Brigitta and Geuter, Ulfried and Schaefert, Rainer", title="Smartphone-Based Psychotherapeutic Interventions in Blended Care of Cancer Survivors: Nested Randomized Clinical Trial", journal="JMIR Cancer", year="2023", month="Aug", day="28", volume="9", pages="e38515", keywords="digital therapeutics", keywords="ecological momentary assessment (EMA)", keywords="ecological momentary intervention (EMI)", keywords="internet- and mobile-based intervention", keywords="microintervention", keywords="neoplasm", keywords="smartphone-based intervention", keywords="postcancer treatment", keywords="body psychotherapy", keywords="mobile phone", abstract="Background: Cancer is related to not only physical but also mental suffering. Notably, body image disturbances are highly relevant to cancer-related changes often persisting beyond recovery from cancer. Scalable and low-barrier interventions that can be blended with face-to-face psychotherapy for cancer survivors are highly warranted. Objective: The aim of the study is to investigate whether smartphone-based bodily interventions are more effective to improve the mood of patients with cancer than smartphone-based fairy tale interventions (control intervention). Methods: We recruited patients with cancer in 2 Swiss hospitals and conducted daily, fully automated smartphone-based interventions 6 times a week for 5 consecutive weeks, blended with weekly face-to-face group body psychotherapy. We applied 2 types of smartphone-based interventions using a within-subject design, randomly assigning patients daily to either bodily interventions or fairy tales. Each intervention type was presented 3 times a week. For this secondary analysis, 3-level mixed models were estimated with mood assessed by the 3 Multidimensional Mood Questionnaire subscales for good-bad mood, wakefulness, and calmness as key indicators. In addition, the effects on experience of presence, vitality, and burden assessed with visual analog scales were investigated. Results: Based on the data from s=732 interventions performed by 36 participants, good-bad mood improved ($\beta$=.27; 95\% CI 0.062-0.483), and participants became calmer ($\beta$=.98; 95\% CI 0.740-1.211) following smartphone-based interventions. Wakefulness did not significantly change from pre- to postsmartphone--based intervention ($\beta$=.17; 95\% CI --0.081 to 0.412). This was true for both intervention types. There was no interaction effect of intervention type with change in good-bad mood ($\beta$=--.01; 95\% CI --0.439 to 0.417), calmness ($\beta$=.22; 95\% CI --0.228 to 0.728), or wakefulness ($\beta$=.14; 95\% CI --0.354 to 0.644). Experience of presence ($\beta$=.34; 95\% CI 0.271-0.417) and vitality ($\beta$=.35; 95\% CI 0.268-0.426) increased from pre- to postsmartphone--based intervention, while experience of burden decreased ($\beta$=--0.40; 95\% CI --0.481 to 0.311). Again, these effects were present for both intervention types. There were no significant interaction effects of intervention type with pre- to postintervention changes in experience of presence ($\beta$=.14; 95\% CI --0.104 to 0.384), experience of vitality ($\beta$=.06; 95\% CI --0.152 to 0.265), and experience of burden ($\beta$=--.16; 95\% CI --0.358 to 0.017). Conclusions: Our results suggest that both smartphone-based audio-guided bodily interventions and fairy tales have the potential to improve the mood of cancer survivors. Trial Registration: ClinicalTrials.gov NCT03707548; https://clinicaltrials.gov/study/NCT03707548 International Registered Report Identifier (IRRID): RR2-10.1186/s40359-019-0357-1 ", doi="10.2196/38515", url="https://cancer.jmir.org/2023/1/e38515", url="http://www.ncbi.nlm.nih.gov/pubmed/37639296" } @Article{info:doi/10.2196/44707, author="Luetke Lanfer, Hanna and Reifegerste, Doreen and Berg, Annika and Memenga, Paula and Baumann, Eva and Weber, Winja and Geulen, Julia and M{\"u}ller, Anne and Hahne, Andrea and Weg-Remers, Susanne", title="Understanding Trust Determinants in a Live Chat Service on Familial Cancer: Qualitative Triangulation Study With Focus Groups and Interviews in Germany", journal="J Med Internet Res", year="2023", month="Aug", day="23", volume="25", pages="e44707", keywords="trust", keywords="live chat", keywords="web-based health seeking", keywords="qualitative research", keywords="cancer", abstract="Background: In dealing with familial cancer risk, seeking web-based health information can be a coping strategy for different stakeholder groups (ie, patients, relatives, and those suspecting an elevated familial cancer risk). In the vast digital landscape marked by a varied quality of web-based information and evolving technologies, trust emerges as a pivotal factor, guiding the process of health information seeking and interacting with digital health services. This trust formation in health information can be conceptualized as context dependent and multidimensional, involving 3 key dimensions: information seeker (trustor), information provider (trustee), and medium or platform (application). Owing to the rapid changes in the digital context, it is critical to understand how seekers form trust in new services, given the interplay among these different dimensions. An example of such a new service is a live chat operated by physicians for the general public with personalized cancer-related information and a focus on familial cancer risk. Objective: To gain a comprehensive picture of trust formation in a cancer-related live chat service, this study investigates the 3 dimensions of trust---trustor, trustee, and application---and their respective relevant characteristics based on a model of trust in web-based health information. In addition, the study aims to compare these characteristics across the 3 different stakeholder groups, with the goal to enhance the service's trustworthiness for each group. Methods: This qualitative study triangulated the different perspectives of medical cancer advisers, advisers from cancer support groups, and members of the public in interviews and focus group discussions to explore the 3 dimensions of trust---trustor, trustee, and application---and their determinants for a new live chat service for familial cancer risk to be implemented at the German Cancer Information Service. Results: The results indicate that experience with familial cancer risk is the key trustor characteristic to using, and trusting information provided by, the live chat service. The live chat might also be particularly valuable for people from minority groups who have unmet needs from physician-patient interactions. Participants highlighted trustee characteristics such as ability, benevolence, integrity, and humanness (ie, not a chatbot) as pivotal in a trustworthy cancer live chat service. Application-related characteristics, including the reputation of the institution, user-centric design, modern technology, and visual appeal, were also deemed essential. Despite the different backgrounds and sociodemographics of the 3 stakeholder groups, many overlaps were found among the 3 trust dimensions and their respective characteristics. Conclusions: Trust in a live chat for cancer information is formed by different dimensions and characteristics of trust. This study underscores the importance of understanding trust formation in digital health services and suggests potential enhancements for effective, trustworthy interactions in live chat services (eg, by providing biographies of the human medical experts to differentiate them from artificial intelligence chatbots). ", doi="10.2196/44707", url="https://www.jmir.org/2023/1/e44707", url="http://www.ncbi.nlm.nih.gov/pubmed/37610815" } @Article{info:doi/10.2196/46953, author="Wang, Jiamin and Zhen, Xuemei and Coyte, C. Peter and Shao, Di and Zhao, Ni and Chang, Lele and Feng, Yujia and Sun, Xiaojie", title="Association Between Online Health Information--Seeking Behaviors by Caregivers and Delays in Pediatric Cancer: Mixed Methods Study in China", journal="J Med Internet Res", year="2023", month="Aug", day="16", volume="25", pages="e46953", keywords="online health information--seeking behaviors", keywords="patient delay", keywords="diagnostic delay", keywords="treatment delay", keywords="mixed methods study", abstract="Background: Pediatric cancer patients in China often present at an advanced stage of disease resulting in lower survival and poorer health outcomes. One factor hypothesized to contribute to delays in pediatric cancer has been the online health information--seeking (OHIS) behaviors by caregivers. Objective: This study aims to examine the association between OHIS behaviors by caregivers and delays for Chinese pediatric cancer patients using a mixed methods approach. Methods: This study used a mixed methods approach, specifically a sequential explanatory design. OHIS behavior by the caregiver was defined as the way caregivers access information relevant to their children's health via the Internet. Delays in pediatric cancer were defined as any one of the following 3 types of delay: patient delay, diagnosis delay, or treatment delay. The quantitative analysis methods included descriptive analyses, Student t tests, Pearson chi-square test, and binary logistic regression analysis, all performed using Stata. The qualitative analysis methods included conceptual content analysis and the Colaizzi method. Results: A total of 303 pediatric cancer patient-caregiver dyads was included in the quantitative survey, and 29 caregivers completed the qualitative interview. Quantitative analysis results revealed that nearly one-half (151/303, 49.8\%) of patients experienced delays in pediatric cancer, and the primary type of delay was diagnosis delay (113/303, 37.3\%), followed by patient delay (50/303, 16.5\%) and treatment delay (24/303, 7.9\%). In this study, 232 of the 303 (76.6\%) caregiver participants demonstrated OHIS behaviors. When those engaged in OHIS behaviors were compared with their counterparts, the likelihood of patient delay more than doubled (odds ratio=2.21; 95\% CI 1.03-4.75). Qualitative analysis results showed that caregivers' OHIS behaviors impacted the cancer care pathway by influencing caregivers' symptom appraisal before the first medical contact and caregivers' acceptance of health care providers' diagnostic and treatment decisions. Conclusions: Our ?ndings suggest that OHIS among Chinese pediatric caregivers may be a risk factor for increasing the likelihood of patient delay. Our government and society should make a concerted effort to regulate online health information and improve its quality. Specialized freemium consultations provided by health care providers via online health informatic platforms are needed to shorten the time for caregivers' cancer symptom appraisal before the first medical contact. ", doi="10.2196/46953", url="https://www.jmir.org/2023/1/e46953", url="http://www.ncbi.nlm.nih.gov/pubmed/37585244" } @Article{info:doi/10.2196/43749, author="Lazard, J. Allison and Nicolla, Sydney and Vereen, N. Rhyan and Pendleton, Shanetta and Charlot, Marjory and Tan, Hung-Jui and DiFranzo, Dominic and Pulido, Marlyn and Dasgupta, Nabarun", title="Exposure and Reactions to Cancer Treatment Misinformation and Advice: Survey Study", journal="JMIR Cancer", year="2023", month="Jul", day="28", volume="9", pages="e43749", keywords="cancer", keywords="misinformation", keywords="social media", keywords="prosocial intervening", keywords="treatment", keywords="false information", keywords="alternative medicine", keywords="information spread", keywords="dissemination", keywords="infodemiology", keywords="mobile phone", abstract="Background: Cancer treatment misinformation, or false claims about alternative cures, often spreads faster and farther than true information on social media. Cancer treatment misinformation can harm the psychosocial and physical health of individuals with cancer and their cancer care networks by causing distress and encouraging people to abandon support, potentially leading to deviations from evidence-based care. There is a pressing need to understand how cancer treatment misinformation is shared and uncover ways to reduce misinformation. Objective: We aimed to better understand exposure and reactions to cancer treatment misinformation, including the willingness of study participants to prosocially intervene and their intentions to share Instagram posts with cancer treatment misinformation. Methods: We conducted a survey on cancer treatment misinformation among US adults in December 2021. Participants reported their exposure and reactions to cancer treatment misinformation generally (saw or heard, source, type of advice, and curiosity) and specifically on social media (platform, believability). Participants were then randomly assigned to view 1 of 3 cancer treatment misinformation posts or an information post and asked to report their willingness to prosocially intervene and their intentions to share. Results: Among US adult participants (N=603; mean age 46, SD 18.83 years), including those with cancer and cancer caregivers, almost 1 in 4 (142/603, 23.5\%) received advice about alternative ways to treat or cure cancer. Advice was primarily shared through family (39.4\%) and friends (37.3\%) for digestive (30.3\%) and natural (14.1\%) alternative cancer treatments, which generated curiosity among most recipients (106/142, 74.6\%). More than half of participants (337/603, 55.9\%) saw any cancer treatment misinformation on social media, with significantly higher exposure for those with cancer (53/109, 70.6\%) than for those without cancer (89/494, 52.6\%; P<.001). Participants saw cancer misinformation on Facebook (39.8\%), YouTube (27\%), Instagram (22.1\%), and TikTok (14.1\%), among other platforms. Participants (429/603, 71.1\%) thought cancer treatment misinformation was true, at least sometimes, on social media. More than half (357/603, 59.2\%) were likely to share any cancer misinformation posts shown. Many participants (412/603, 68.3\%) were willing to prosocially intervene for any cancer misinformation posts, including flagging the cancer treatment misinformation posts as false (49.7\%-51.4\%) or reporting them to the platform (48.1\%-51.4\%). Among the participants, individuals with cancer and those who identified as Black or Hispanic reported greater willingness to intervene to reduce cancer misinformation but also higher intentions to share misinformation. Conclusions: Cancer treatment misinformation reaches US adults through social media, including on widely used platforms for support. Many believe that social media posts about alternative cancer treatment are true at least some of the time. The willingness of US adults, including those with cancer and members of susceptible populations, to prosocially intervene could initiate the necessary community action to reduce cancer treatment misinformation if coupled with strategies to help individuals discern false claims. ", doi="10.2196/43749", url="https://cancer.jmir.org/2023/1/e43749", url="http://www.ncbi.nlm.nih.gov/pubmed/37505790" } @Article{info:doi/10.2196/42852, author="Saevarsdottir, Rut Saeunn and Gudmundsdottir, Lara Sigridur", title="Mobile Apps and Quality of Life in Patients With Breast Cancer and Survivors: Systematic Literature Review", journal="J Med Internet Res", year="2023", month="Jul", day="26", volume="25", pages="e42852", keywords="mobile health", keywords="mHealth", keywords="breast cancer", keywords="quality of life", keywords="review", keywords="systematic review", keywords="cancer treatment", keywords="mobile app", keywords="patient care", keywords="survivorship", keywords="digital health intervention", keywords="lifestyle intervention", keywords="mobile phone", abstract="Background: Side effects of breast cancer treatment may persist long into survivorship, reducing quality of life (QOL) in patients with breast cancer and survivors. There is growing evidence for the use of digital health technologies, such as mobile apps, to support self-management, decrease symptom burden, and improve QOL in patients with cancer. However, an updated overview of the effects of mobile apps on QOL and well-being in patients with breast cancer and survivors is needed. Objective: The aim of this review was to provide an overview of breast cancer--specific, mobile app--driven lifestyle or behavioral interventions in patient care through to survivorship and their impact on QOL and mental well-being. Methods: A systematic search of PubMed, Scopus, and Web of Science was conducted to identify relevant studies. The inclusion criteria were limited to original studies involving a trial of a mobile app--driven lifestyle or behavioral intervention for patients with breast cancer or survivors and using QOL or well-being measures. The results of the studies that met the inclusion criterion were then synthesized in text and table format. The quality of the evidence was assessed with the Cochrane risk-of-bias tool. Results: A total of 17 studies with the number of participants ranging from 23 to 356 met the inclusion criterion. Of the 17 reviewed studies, 7 (41\%) delivered an app-only intervention, and 10 (59\%) combined an app with additional supporting materials, such as SMS text messaging, telecoaching, wearables, or printed materials. Among the 17 reviewed studies, 6 (35\%) focused on aiding patients with breast cancer during the active treatment phase (excluding ongoing hormone therapy), whereas the remaining 11 (65\%) focused on survivorship. The majority of the studies (14/17, 82\%) observed some positive effects on QOL or well-being measures. Conclusions: The results of the review indicate that mobile apps are a promising avenue for improving QOL and well-being in breast cancer care. Positive effects were observed in patients undergoing active treatment in all reviewed studies, but effects were less clear after chemotherapy and in long-term survivors. Although lifestyle and behavioral digital interventions are still being developed, and further research should still be pursued, the available data suggest that current mobile health apps aid patients with breast cancer and survivors. ", doi="10.2196/42852", url="https://www.jmir.org/2023/1/e42852", url="http://www.ncbi.nlm.nih.gov/pubmed/37494111" } @Article{info:doi/10.2196/43051, author="Potts, Courtney and Lindstr{\"o}m, Frida and Bond, Raymond and Mulvenna, Maurice and Booth, Frederick and Ennis, Edel and Parding, Karolina and Kostenius, Catrine and Broderick, Thomas and Boyd, Kyle and Vartiainen, Anna-Kaisa and Nieminen, Heidi and Burns, Con and Bickerdike, Andrea and Kuosmanen, Lauri and Dhanapala, Indika and Vakaloudis, Alex and Cahill, Brian and MacInnes, Marion and Malcolm, Martin and O'Neill, Siobhan", title="A Multilingual Digital Mental Health and Well-Being Chatbot (ChatPal): Pre-Post Multicenter Intervention Study", journal="J Med Internet Res", year="2023", month="Jul", day="6", volume="25", pages="e43051", keywords="conversational user interfaces", keywords="digital interventions", keywords="Warwick-Edinburgh Mental Well-Being Scale", keywords="Satisfaction With Life Scale", keywords="World Health Organization-Five Well-Being Index Scale", keywords="mental health", keywords="apps", keywords="health care", keywords="mixed methods", keywords="conversation agent", keywords="mental well-being", keywords="digital health intervention", abstract="Background: In recent years, advances in technology have led to an influx of mental health apps, in particular the development of mental health and well-being chatbots, which have already shown promise in terms of their efficacy, availability, and accessibility. The ChatPal chatbot was developed to promote positive mental well-being among citizens living in rural areas. ChatPal is a multilingual chatbot, available in English, Scottish Gaelic, Swedish, and Finnish, containing psychoeducational content and exercises such as mindfulness and breathing, mood logging, gratitude, and thought diaries. Objective: The primary objective of this study is to evaluate a multilingual mental health and well-being chatbot (ChatPal) to establish if it has an effect on mental well-being. Secondary objectives include investigating the characteristics of individuals that showed improvements in well-being along with those with worsening well-being and applying thematic analysis to user feedback. Methods: A pre-post intervention study was conducted where participants were recruited to use the intervention (ChatPal) for a 12-week period. Recruitment took place across 5 regions: Northern Ireland, Scotland, the Republic of Ireland, Sweden, and Finland. Outcome measures included the Short Warwick-Edinburgh Mental Well-Being Scale, the World Health Organization-Five Well-Being Index, and the Satisfaction with Life Scale, which were evaluated at baseline, midpoint, and end point. Written feedback was collected from participants and subjected to qualitative analysis to identify themes. Results: A total of 348 people were recruited to the study (n=254, 73\% female; n=94, 27\% male) aged between 18 and 73 (mean 30) years. The well-being scores of participants improved from baseline to midpoint and from baseline to end point; however, improvement in scores was not statistically significant on the Short Warwick-Edinburgh Mental Well-Being Scale (P=.42), the World Health Organization-Five Well-Being Index (P=.52), or the Satisfaction With Life Scale (P=.81). Individuals that had improved well-being scores (n=16) interacted more with the chatbot and were significantly younger compared to those whose well-being declined over the study (P=.03). Three themes were identified from user feedback, including ``positive experiences,'' ``mixed or neutral experiences,'' and ``negative experiences.'' Positive experiences included enjoying exercises provided by the chatbot, while most of the mixed, neutral, or negative experiences mentioned liking the chatbot overall, but there were some barriers, such as technical or performance errors, that needed to be overcome. Conclusions: Marginal improvements in mental well-being were seen in those who used ChatPal, albeit nonsignificant. We propose that the chatbot could be used along with other service offerings to complement different digital or face-to-face services, although further research should be carried out to confirm the effectiveness of this approach. Nonetheless, this paper highlights the need for blended service offerings in mental health care. ", doi="10.2196/43051", url="https://www.jmir.org/2023/1/e43051", url="http://www.ncbi.nlm.nih.gov/pubmed/37410537" } @Article{info:doi/10.2196/41594, author="Filipponi, Chiara and Chichua, Mariam and Masiero, Marianna and Mazzoni, Davide and Pravettoni, Gabriella", title="Cancer Pain Experience Through the Lens of Patients and Caregivers: Mixed Methods Social Media Study", journal="JMIR Cancer", year="2023", month="Jul", day="3", volume="9", pages="e41594", keywords="pain", keywords="cancer", keywords="quality of life", keywords="social support", keywords="emotion", keywords="personality", keywords="decision-making", abstract="Background: Cancer pain represents a challenge for cancer patients and their family members. Despite progression in pain management, pain is still underreported and undertreated, and there is limited information on the related needs that patients and caregivers may have. Online platforms represent a fundamental tool for research to reveal the unmet needs of these users and their emotions outside the medical setting. Objective: This study aimed to (1) reveal the unmet needs of both patients and caregivers and (2) detect the emotional activation associated with cancer pain by analyzing the textual patterns of both users. Methods: A descriptive and quantitative analysis of qualitative data was performed in RStudio v.2022.02.3 (RStudio Team). We analyzed 679 posts (161 from caregivers and 518 from patients) published over 10 years on the ``cancer'' subreddit of Reddit to identify unmet needs and emotions related to cancer pain. Hierarchical clustering, and emotion and sentiment analysis were conducted. Results: The language used for describing experiences related to cancer pain and expressed needs differed between patients and caregivers. For patients (agglomerative coefficient=0.72), the large cluster labeled unmet needs included the following clusters: (1A) reported experiences, with the subclusters (a) relationship with doctors/spouse and (b) reflections on physical features; and (1B) changes observed over time, with the subclusters (a) regret and (b) progress. For caregivers (agglomerative coefficient=0.80), the main clusters were as follows: (1A) social support and (1B) reported experiences, with the subclusters (a) psychosocial challenges and (b) grief. Moreover, comparison between the 2 groups (entanglement coefficient=0.28) showed that they shared a common cluster labeled uncertainty. Regarding emotion and sentiment analysis, patients expressed a significantly higher negative sentiment than caregivers (z=?2.14; P<.001). On the contrary, caregivers expressed a higher positive sentiment compared with patients (z=?2.26; P<.001), with trust (z=?4.12; P<.001) and joy (z=?2.03; P<.001) being the most prevalent positive emotions. Conclusions: Our study emphasized different perceptions of cancer pain in patients and caregivers. We revealed different needs and emotional activations in the 2 groups. Moreover, our study findings highlight the importance of considering caregivers in medical care. Overall, this study increases knowledge about the unmet needs and emotions of patients and caregivers, which may have important clinical implications in pain management. ", doi="10.2196/41594", url="https://cancer.jmir.org/2023/1/e41594", url="http://www.ncbi.nlm.nih.gov/pubmed/37399067" } @Article{info:doi/10.2196/48499, author="Lin, Yufen and Porter, S. Laura and Chee, Wonshik and Alese, B. Olatunji and Curseen, A. Kimberly and Higgins, K. Melinda and Northouse, Laurel and Xiao, Canhua", title="A Web-Based Dyadic Intervention to Manage Psychoneurological Symptoms for Patients With Colorectal Cancer and Their Caregivers: Protocol for a Mixed Methods Study", journal="JMIR Res Protoc", year="2023", month="Jun", day="28", volume="12", pages="e48499", keywords="chemotherapy", keywords="colorectal cancer", keywords="intervention", keywords="symptoms", keywords="web-based program", abstract="Background: Patients with colorectal cancer (CRC) receiving chemotherapy often experience psychoneurological symptoms (PNS; ie, fatigue, depression, anxiety, sleep disturbance, pain, and cognitive dysfunction) that negatively impact both patients' and their caregivers' health outcomes. Limited information is available on PNS management for CRC patient and caregiver dyads. Objective: The purposes of this study are to (1) develop a web-based dyadic intervention for patients with CRC receiving chemotherapy and their caregivers (CRCweb) and (2) evaluate the feasibility, acceptability, and preliminary effects of CRCweb among patient-caregiver dyads in a cancer clinic. Methods: A mixed methods approach will be used. Semistructured interviews among 8 dyads will be conducted to develop CRCweb. A single-group pre- and posttest clinical trial will be used to examine the feasibility, acceptability, and preliminary effects of the intervention (CRCweb) among 20 dyads. Study assessments will be conducted before (T1) and after intervention (T2). Content analysis will be performed for semistructured interviews. Descriptive statistics will be calculated separately for patients and caregivers, and pre-post paired t tests will be used to evaluate treatment effects. Results: This study was funded in November 2022. As of April 2023, we have obtained institutional review board approval and completed clinical trial registration and are currently recruiting patient-caregiver dyads in a cancer clinic. The study is expected to be completed in October 2024. Conclusions: Developing a web-based dyadic intervention holds great promise to reduce the PNS burden in patients with CRC receiving chemotherapy and their caregivers. The findings from this study will advance intervention development and implementation of symptom management and palliative care for patients with cancer and their caregivers. Trial Registration: ClinicalTrials.gov NCT05663203; https://clinicaltrials.gov/ct2/show/NCT05663203 International Registered Report Identifier (IRRID): PRR1-10.2196/48499 ", doi="10.2196/48499", url="https://www.researchprotocols.org/2023/1/e48499", url="http://www.ncbi.nlm.nih.gov/pubmed/37379055" } @Article{info:doi/10.2196/41876, author="Diefenbach, A. Michael and Marziliano, Allison and Siembida, J. Elizabeth and Mistretta, Thomas and Pfister, Halie and Yacoub, Andrea and Aibel, Kelli and Patel, Priya and Lapitan, Emmanuel and Tagai, K. Erin and Smaldone, Marc and Miller, M. Suzanne", title="Cancer Resource and Information Support (CRIS) for Bladder Cancer Survivors and Their Caregivers: Development and Usability Testing Study", journal="JMIR Form Res", year="2023", month="Jun", day="22", volume="7", pages="e41876", keywords="muscle invasive bladder cancer", keywords="behavioral intervention development", keywords="ORBIT model", keywords="usability testing", keywords="web-based intervention", abstract="Background: Bladder cancer survivors and their caregivers face profound practical (eg, use of stoma appliances and care for urinary diversion methods) and psychosocial (eg, depression and anxiety) challenges after surgical treatment with cystectomy. Objective: To improve the health-related quality of life and postsurgical outcomes of both bladder cancer survivors and their caregivers, the team, in collaboration with Sourcetop, Inc (software design) and Dappersmith (graphic design), developed the Cancer Resource and Information Support (CRIS) software. The purpose of this manuscript is to report on the development and usability testing of the CRIS software. Methods: The development of the CRIS software was guided by the Obesity-Related Behavioral Intervention Trials (ORBIT) model for developing behavioral treatments for chronic diseases. The ORBIT model is unique in that it proposes a flexible and progressive process with prespecific clinically significant milestones for forward movement and returns to earlier stages for refinement, and it facilitates communication among diverse groups by using terminology from the drug development model. This paper focuses on 2 phases of the ORBIT model: phase IA: define and IB: refine. During phase IA, the study team developed solutions for the stated clinical problem---adjustment to life post cystectomy---by reviewing the literature and collecting feedback from clinicians, professional organizations, bladder cancer survivors, and their caregivers. During Phase IB, the study team focused on tailoring content in the CRIS software to the user as well as usability testing with 7 participants. Results: The finished product is CRIS, a web-based software for survivors of bladder cancer and their caregivers to serve as a health management and lifestyle resource after surgery. Overarching themes from phase IA (participant feedback) included how to use new medical equipment, tips and tricks for easier living with new medical equipment, questions about health maintenance, and questions about lifestyle modifications. To accommodate our target population, we also incorporated recommendations from the Americans with Disabilities Act for website design, such as large text size, large paragraph spacing, highly contrasting text and background colors, use of headings and labels to describe the purpose of the content, portrait orientation without the need for horizontal scrolling, multiple ways to access a web page within a set of pages, ability to navigate web pages in sequential order, and in-text links that are descriptive. Usability participants evaluated CRIS very positively, indicating that it was easy to use, the functions were well-integrated, and if available, they would use CRIS frequently. Conclusions: CRIS, developed over the course of 18 months by integrating feedback from experts, literature reviews, and usability testing, is the first web-based software developed for bladder cancer survivors and their caregivers to help them adjust to life following cystectomy. The efficacy of CRIS in improving patients' and caregivers' quality of life is currently being evaluated in a randomized controlled trial. ", doi="10.2196/41876", url="https://formative.jmir.org/2023/1/e41876", url="http://www.ncbi.nlm.nih.gov/pubmed/37347533" } @Article{info:doi/10.2196/40113, author="Leung, W. Yvonne and Ng, Steve and Duan, Lauren and Lam, Claire and Chan, Kenith and Gancarz, Mathew and Rennie, Heather and Trachtenberg, Lianne and Chan, P. Kai and Adikari, Achini and Fang, Lin and Gratzer, David and Hirst, Graeme and Wong, Jiahui and Esplen, Jane Mary", title="Therapist Feedback and Implications on Adoption of an Artificial Intelligence--Based Co-Facilitator for Online Cancer Support Groups: Mixed Methods Single-Arm Usability Study", journal="JMIR Cancer", year="2023", month="Jun", day="9", volume="9", pages="e40113", keywords="cancer", keywords="recommender system", keywords="natural language processing", keywords="LIWC", keywords="emotion analysis", keywords="therapist adoption", keywords="therapist attitudes", keywords="legal implications of AI", keywords="therapist liability", abstract="Background: The recent onset of the COVID-19 pandemic and the social distancing requirement have created an increased demand for virtual support programs. Advances in artificial intelligence (AI) may offer novel solutions to management challenges such as the lack of emotional connections within virtual group interventions. Using typed text from online support groups, AI can help identify the potential risk of mental health concerns, alert group facilitator(s), and automatically recommend tailored resources while monitoring patient outcomes. Objective: The aim of this mixed methods, single-arm study was to evaluate the feasibility, acceptability, validity, and reliability of an AI-based co-facilitator (AICF) among CancerChatCanada therapists and participants to monitor online support group participants' distress through a real-time analysis of texts posted during the support group sessions. Specifically, AICF (1) generated participant profiles with discussion topic summaries and emotion trajectories for each session, (2) identified participant(s) at risk for increased emotional distress and alerted the therapist for follow-up, and (3) automatically suggested tailored recommendations based on participant needs. Online support group participants consisted of patients with various types of cancer, and the therapists were clinically trained social workers. Methods: Our study reports on the mixed methods evaluation of AICF, including therapists' opinions as well as quantitative measures. AICF's ability to detect distress was evaluated by the patient's real-time emoji check-in, the Linguistic Inquiry and Word Count software, and the Impact of Event Scale-Revised. Results: Although quantitative results showed only some validity of AICF's ability in detecting distress, the qualitative results showed that AICF was able to detect real-time issues that are amenable to treatment, thus allowing therapists to be more proactive in supporting every group member on an individual basis. However, therapists are concerned about the ethical liability of AICF's distress detection function. Conclusions: Future works will look into wearable sensors and facial cues by using videoconferencing to overcome the barriers associated with text-based online support groups. International Registered Report Identifier (IRRID): RR2-10.2196/21453 ", doi="10.2196/40113", url="https://cancer.jmir.org/2023/1/e40113", url="http://www.ncbi.nlm.nih.gov/pubmed/37294610" } @Article{info:doi/10.2196/47195, author="Svendsen, Karianne and Nes, Solberg Lise and Meland, Anders and Larsson, Marie Ine and Gjelsvik, M. Ylva and B{\o}r{\o}sund, Elin and Rygg, M. Christine and Myklebust, {\AA}ge Tor and Reinertsen, V. Kristin and Kiserud, E. Cecilie and Skjerven, Helle and Antoni, H. Michael and Chalder, Trudie and Mjaaland, Ingvil and Carlson, E. Linda and Eriksen, R. Hege and Ursin, Giske", title="Coping After Breast Cancer: Protocol for a Randomized Controlled Trial of Stress Management eHealth Interventions", journal="JMIR Res Protoc", year="2023", month="May", day="24", volume="12", pages="e47195", keywords="breast cancer", keywords="stress management", keywords="mindfulness", keywords="cognitive behavioral therapy", keywords="psychosocial", keywords="StressProffen", keywords="RCT", keywords="eHealth", keywords="digital", keywords="intervention", abstract="Background: One-third or more of breast cancer survivors report stress and other psychological and physical complaints that can negatively impact their quality of life. Psychosocial stress management interventions, shown to mitigate the negative impact of these complaints, can now be delivered as accessible and convenient (for the patient and provider) eHealth interventions. In this randomized controlled trial (RCT), Coping After Breast Cancer (CABC), 2 modified versions of the stress management eHealth intervention program StressProffen were created: one with predominantly cognitive behavioral stress management content (StressProffen-cognitive behavioral therapy intervention [StressProffen-CBI]) and another with predominantly mindfulness-based stress management content (StressProffen-mindfulness-based intervention [StressProffen-MBI]). Objective: This study aims to investigate the effects in breast cancer survivors of using StressProffen-CBI and StressProffen-MBI compared with a control group (treatment as usual). Methods: Women diagnosed with breast cancer (stage I-III, unequivocally human epidermal growth factor receptor 2--positive or estrogen receptor-negative tumors) or ductal carcinoma in situ (DCIS) aged 21-69 years who completed the Cancer Registry of Norway--initiated health survey on quality of life are invited to the CABC trial about 7 months after diagnosis. Women who give consent to participate are randomized (1:1:1) to either the StressProffen-CBI, StressProffen-MBI, or control group. Both StressProffen interventions consist of 10 modules of stress management content delivered through text, sound, video, and images. The primary outcome is between-group changes in perceived stress at 6 months, assessed with Cohen 10-item Perceived Stress Scale. The secondary outcomes comprise changes in quality of life, anxiety, depression, fatigue, sleep, neuropathy, coping, mindfulness, and work-related outcomes approximately 1, 2, and 3 years after diagnosis. Long-term effects of the interventions on work participation, comorbidities, relapse or new cancers, and mortality will be assessed using data from national health registries. Results: Recruitment is scheduled from January 2021 to May 2023. The goal is to recruit 430 participants (100 in each group). As of April 14 2023, 428 participants have been enrolled. Conclusions: The CABC trial is possibly the largest ongoing psychosocial eHealth RCT in patients with breast cancer. If 1 or both interventions prove to be effective in reducing stress and improving psychosocial and physical complains, the StressProffen eHealth interventions could be beneficial, inexpensive, and easily implementable tools for breast cancer survivors when coping with late effects after cancer and cancer treatments. Trial Registration: Clinicaltrials.gov NCT04480203; https://clinicaltrials.gov/ct2/show/NCT04480203 International Registered Report Identifier (IRRID): DERR1-10.2196/47195 ", doi="10.2196/47195", url="https://www.researchprotocols.org/2023/1/e47195", url="http://www.ncbi.nlm.nih.gov/pubmed/37103493" } @Article{info:doi/10.2196/41740, author="Thiessen, Maclean and Raffin Bouchal, Shelly and Tang, A. Patricia and Sinclair, Shane", title="Navigating the Cancer Journey Using Web-Based Information: Grounded Theory Emerging From the Lived Experience of Cancer Patients and Informal Caregivers With Implications for Web-Based Content Design", journal="JMIR Cancer", year="2023", month="May", day="17", volume="9", pages="e41740", keywords="health information behavior", keywords="neoplasm", keywords="theory", keywords="internet", keywords="information needs", keywords="adults", abstract="Background: The internet is an important source of information for many informal caregivers and patients living with cancer. A better understanding of how individuals use the internet to meet their informational needs is important for guiding intervention development. Objective: The objectives of this study were to develop a theory describing why individuals living with cancer use the internet to find information, characterize the challenges faced with existing web-based content, and provide recommendations for web-based content design. Methods: Adults (?18 years) with a history of being patients with cancer or informal caregivers were recruited from Alberta, Canada. After providing informed consent, participants were engaged through digitally recorded one-on-one semistructured interviews, focus groups, a web-based discussion board, and emails. Classic grounded theory guided the study procedures. Results: A total of 21 participants took part in 23 one-on-one interviews and 5 focus groups. The mean age was 53 (SD 15.3) years. Breast, gynecological, and hematological cancers were the most common cancer types (4/21, 19\% each). In total, 67\% (14/21) of patients, 29\% (6/21) of informal caregivers, and 5\% (1/21) of individuals reporting both roles participated. Participants experienced many new challenges in their cancer journey and used the internet to become better oriented to them. For each challenge, internet searching attempted to address one or more of 3 key orientation questions: why the challenge was happening, what to expect, and options for managing it. Better orientation resulted in improved physical and psychosocial well-being. Content that was well laid out, concise, free of distractions, and that addressed the key orientation questions was identified as the most helpful in assisting with orientation. Creators of web-based content are encouraged to 1) clearly identify the cancer challenge and population the content is addressing, as well as the presence of any potentially distressing information; 2) provide versions of the content in different formats, including printer-friendly, audio, video, and alternative languages; 3) state who created the content, including the individuals, organizations, and processes involved; 4) place hyperlinks after the key orientation questions have been addressed; and 5) ensure that the content is optimized for discovery by search engines (ie, Google). Conclusions: Web-based content plays an essential role for many living with cancer. Clinicians are encouraged to take active steps to help patients and informal caregivers find web-based content that meets their informational needs. Content creators also have a responsibility to ensure that the content they create assists and does not hinder those navigating the cancer journey. Research is needed to better understand the many challenges that individuals living with cancer face, including how they are temporally related. In addition, how to optimize web-based content for specific cancer challenges and populations should be considered an important area for future research. ", doi="10.2196/41740", url="https://cancer.jmir.org/2023/1/e41740", url="http://www.ncbi.nlm.nih.gov/pubmed/37195760" } @Article{info:doi/10.2196/39246, author="Lange-Drenth, Lukas and Schulz, Holger and Endsin, Gero and Bleich, Christiane", title="Association of the Extent of Internet Use by Patients With Cancer With Social Support Among Patients and Change in Patient-Reported Treatment Outcomes During Inpatient Rehabilitation: Cross-sectional and Longitudinal Study", journal="JMIR Cancer", year="2023", month="May", day="17", volume="9", pages="e39246", keywords="internet", keywords="internet use", keywords="social support", keywords="perceived social support", keywords="inpatients", keywords="patient-reported outcome measures", keywords="cancer", keywords="rehabilitation", keywords="distress", keywords="fatigue", keywords="pain", abstract="Background: Given the increasing number of cancer survivors and their rising survival rates, rehabilitation plays an increasingly important role. Social support among patients is an essential element of inpatient and day care rehabilitation. The internet can empower patients with cancer to become more active health care consumers and facilitate information and supportive care needs. By contrast, therapists suspect that high internet use during rehabilitation may severely limit social interactions between patients, thus interfering with the patients' rehabilitation program and jeopardizing treatment success. Objective: We hypothesized that the extent of internet use would be negatively related to social support among patients with cancer during their clinical stay as well as fewer improvements in patient-reported treatment outcomes from the first to the last day of their clinical stay. Methods: Patients with cancer participated during their inpatient rehabilitation. Cross-sectional data, such as the extent of participants' internet use and perceived social support among patients, were collected during the last week of their clinic stay. The treatment outcomes, that is, participants' levels of distress, fatigue, and pain, were collected on the first and last day of the clinic stay. We used multiple linear regression analysis to study the association between the extent of internet use and social support among patients with cancer. We used linear mixed model analyses to study the association between the extent of internet use by patients with cancer and the change in patient-reported treatment outcomes. Results: Of the 323 participants, 279 (86.4\%) participants reported that they used the internet. The extent of the internet use (t315=0.78; P=.43) was not significantly associated with the perceived social support among the participants during their clinical stay. In addition, the extent of participants' internet use during their clinical stay was not associated with changes in participants' levels of distress (F1,299=0.12; P=.73), fatigue (F1,299=0.19; P=.67), and pain (F1,303=0.92; P=.34) from the first to the last day of their clinical stay. Conclusions: The extent of internet use does not seem to be negatively associated with the perceived social support among patients with cancer or with the change in patients' levels of distress, fatigue, or pain from the first to the last day of their clinical stay. ", doi="10.2196/39246", url="https://cancer.jmir.org/2023/1/e39246", url="http://www.ncbi.nlm.nih.gov/pubmed/37195742" } @Article{info:doi/10.2196/46281, author="Liou, T. Kevin and McConnell, M. Kelly and Currier, Beatriz M. and Baser, E. Raymond and MacLeod, Jodi and Walker, Desiree and Casaw, Camila and Wong, Greta and Piulson, Lauren and Popkin, Karen and Lopez, Maria Ana and Panageas, Katherine and Bradt, Joke and Mao, J. Jun", title="Telehealth-Based Music Therapy Versus Cognitive Behavioral Therapy for Anxiety in Cancer Survivors: Rationale and Protocol for a Comparative Effectiveness Trial", journal="JMIR Res Protoc", year="2023", month="Apr", day="27", volume="12", pages="e46281", keywords="oncology", keywords="anxiety", keywords="cognitive behavioral therapy", keywords="music therapy", keywords="telehealth", keywords="cancer survivorship", keywords="mental health", keywords="digital health", keywords="mobile phone", abstract="Background: Cancer survivors represent one of the fastest growing populations in the United States. Unfortunately, nearly 1 in 3 survivors experience anxiety symptoms as a long-term consequence of cancer and its treatment. Characterized by restlessness, muscle tension, and worry, anxiety worsens the quality of life; impairs daily functioning; and is associated with poor sleep, depressed mood, and fatigue. Although pharmacological treatment options are available, polypharmacy has become a growing concern for cancer survivors. Music therapy (MT) and cognitive behavioral therapy (CBT) are evidence-based, nonpharmacological treatments that have demonstrated effectiveness in treating anxiety symptoms in cancer populations and can be adapted for remote delivery to increase access to mental health treatments. However, the comparative effectiveness of these 2 interventions delivered via telehealth is unknown. Objective: The aims of the Music Therapy Versus Cognitive Behavioral Therapy for Cancer-related Anxiety (MELODY) study are to determine the comparative effectiveness of telehealth-based MT versus telehealth-based CBT for anxiety and comorbid symptoms in cancer survivors and to identify patient-level factors associated with greater anxiety symptom reduction for MT and CBT. Methods: The MELODY study is a 2-arm, parallel-group randomized clinical trial that aims to compare the effectiveness of MT versus CBT for anxiety and comorbid symptoms. The trial will enroll 300 English- or Spanish-speaking survivors of any cancer type or stage who have experienced anxiety symptoms for at least 1 month. Participants will receive 7 weekly sessions of MT or CBT delivered remotely via Zoom (Zoom Video Communications, Inc) over 7 weeks. Validated instruments to assess anxiety (primary outcome), comorbid symptoms (fatigue, depression, insomnia, pain, and cognitive dysfunction), and health-related quality of life will be administered at baseline and at weeks 4, 8 (end of treatment), 16, and 26. Semistructured interviews will be conducted at week 8 with a subsample of 60 participants (30 per treatment arm) to understand individual experiences with the treatment sessions and their impact. Results: The first study participant was enrolled in February 2022. As of January 2023, 151 participants have been enrolled. The trial is expected to be completed by September 2024. Conclusions: This study is the first and largest randomized clinical trial to compare the short- and long-term effectiveness of remotely delivered MT and CBT for anxiety in cancer survivors. Limitations include the lack of usual care or placebo control groups and the lack of formal diagnostic assessments for psychiatric disorders among trial participants. The study findings will help guide treatment decisions for 2 evidence-based, scalable, and accessible interventions to promote mental well-being during cancer survivorship. International Registered Report Identifier (IRRID): DERR1-10.2196/46281 ", doi="10.2196/46281", url="https://www.researchprotocols.org/2023/1/e46281", url="http://www.ncbi.nlm.nih.gov/pubmed/37103999" } @Article{info:doi/10.2196/45475, author="Reis, Joaquim and Travado, Luzia and Scherrer, Alexander and Kosmidis, Thanos and Venios, Stefanos and Laras, Emmanouil Paris and Oestreicher, Gabrielle and Moehler, Markus and Parolini, Margherita and Passardi, Alessandro and Meggiolaro, Elena and Martinelli, Giovanni and Petracci, Elisabetta and Zingaretti, Chiara and Diamantopoulos, Sotiris and Plakia, Maria and Vassiliou, Charalampos and Mousa, Suheib and Zifrid, Robert and Sullo, Giulio Francesco and Gallio, Chiara", title="Digital Guardian Angel Supported by an Artificial Intelligence System to Improve Quality of Life, Well-being, and Health Outcomes of Patients With Cancer (ONCORELIEF): Protocol for a Single Arm Prospective Multicenter Pilot Study", journal="JMIR Res Protoc", year="2023", month="Apr", day="21", volume="12", pages="e45475", keywords="eHealth", keywords="artificial intelligence", keywords="quality of life and well-being", keywords="supportive cancer care", keywords="mobile phone", keywords="cancer support", keywords="artificial intelligence--based recommendations", abstract="Background: According to Europe's Beating Cancer Plan, the number of cancer survivors is growing every year and is now estimated at over 12 million in Europe. A main objective of the European Commission is to ensure that cancer survivors can enjoy a high quality of life, underlining the role of digital technology and eHealth apps and tools to achieve this. Objective: The main objective of this study is the development of a user-centered artificial intelligence system to facilitate the input and integration of patient-related biopsychosocial data to improve posttreatment quality of life, well-being, and health outcomes and examine the feasibility of this digitally assisted workflow in a real-life setting in patients with colorectal cancer and acute myeloid leukemia. Methods: A total of 60 patients with colorectal cancer and 30 patients with acute myeloid leukemia will be recruited from 2 clinical centers: Universit{\"a}tsmedizin der Johannes Gutenberg-Universit{\"a}t Mainz (Mainz, Germany) and IRCCS Istituto Romagnolo per lo Studio dei Tumori ``Dino Amadori'' (IRST, Italy). Psychosocial data (eg, emotional distress, fatigue, quality of life, subjective well-being, sleep problems, and appetite loss) will be collected by questionnaires via a smartphone app, and physiological data (eg, heart rate, skin temperature, and movement through step count) will be collected by a customizable smart wrist-worn sensor device. Each patient will be assessed every 2 weeks over their 3-month participation in the ONCORELIEF study. Inclusion criteria include patients with the diagnosis of acute myeloid leukemia or colorectal cancer, adult patients aged 18 years and older, life expectancy greater than 12 months, Eastern Cooperative Oncology Group performance status ?2, and patients who have a smartphone and agree to use it for the purpose of the study. Exclusion criteria include patients with a reduced cognitive function (such as dementia) or technological illiteracy and other known active malignant neoplastic diseases (patients with a medical history of treated neoplastic disease are included). Results: The pilot study started on September 1, 2022. As of January 2023, we enrolled 33 patients with colorectal cancer and 7 patients with acute myeloid leukemia. As of January 2023, we have not yet started the data analysis. We expect to get all data in June 2023 and expect the results to be published in the second semester of 2023. Conclusions: Web-based and mobile apps use methods from mathematical decision support and artificial intelligence through a closed-loop workflow that connects health professionals and patients. The ONCORELIEF system has the potential of continuously identifying, collecting, and processing data from diverse patient dimensions to offer health care recommendations, support patients with cancer to address their unmet needs, and optimize survivorship care. Trial Registration: German Clinical Trials Register (DRKS) 00027808; https://drks.de/search/en/trial/DRKS00027808 International Registered Report Identifier (IRRID): DERR1-10.2196/45475 ", doi="10.2196/45475", url="https://www.researchprotocols.org/2023/1/e45475", url="http://www.ncbi.nlm.nih.gov/pubmed/37083563" } @Article{info:doi/10.2196/45382, author="Choudhury, Avishek", title="Impact of Social Isolation, Physician-Patient Communication, and Self-perception on the Mental Health of Patients With Cancer and Cancer Survivors: National Survey Analysis", journal="Interact J Med Res", year="2023", month="Apr", day="7", volume="12", pages="e45382", keywords="cancer communication", keywords="cancer stigma", keywords="mental health", keywords="social isolation", keywords="cancer survivorship", keywords="patient-centeredness", abstract="Background: Cancer is perceived as a life-threatening, fear-inducing, and stigmatized disease. Most patients with cancer and cancer survivors commonly experience social isolation, negative self-perception, and psychological distress. The heavy toll that cancer takes on patients continues even after treatment. It is common for many patients with cancer to feel uncertain about their future. Some undergo anxiety, loneliness, and fear of getting cancer again. Objective: This study examined the impact of social isolation, self-perception, and physician-patient communication on the mental health of patients with cancer and cancer survivors. The study also explored the impact of social isolation and physician-patient communication on self-perception. Methods: This retrospective study used restricted data from the 2021 Health Information National Trends Survey (HINTS), which collected data from January 11, 2021, to August 20, 2021. We used the partial least squares structural equation modeling (PLS-SEM) method for data analysis. We checked for quadratic effects among all the paths connecting social isolation, poor physician-patient communication, mental health (measured using the 4-item Patient Health Questionnaire [PHQ-4]), and negative self-perception. The model was controlled for confounding factors such as respondents' annual income, education level, and age. Bias-corrected and accelerated (BCA) bootstrap methods were used to estimate nonparametric CIs. Statistical significance was tested at 95\% CI (2-tailed). We also conducted a multigroup analysis in which we created 2 groups. Group A consisted of newly diagnosed patients with cancer who were undergoing cancer treatment during the survey or had received cancer treatment within the last 12 months (receipt of cancer treatment during the COVID-19 pandemic). Group B consisted of respondents who had received cancer treatment between 5 and 10 years previously (receipt of cancer treatment before the COVID-19 pandemic). Results: The analysis indicated that social isolation had a quadratic effect on mental health, with higher levels of social isolation associated with worse mental health outcomes up to a certain point. Self-perception positively affected mental health, with higher self-perception associated with better mental health outcomes. In addition, physician-patient communication significantly indirectly affected mental health via self-perception. Conclusions: The findings of this study provide important insights into the factors that affect the mental health of patients with cancer. Our results suggest that social isolation, negative self-perception, and communication with care providers are significantly related to mental health in patients with cancer. ", doi="10.2196/45382", url="https://www.i-jmr.org/2023/1/e45382", url="http://www.ncbi.nlm.nih.gov/pubmed/37027201" } @Article{info:doi/10.2196/39740, author="Wilson, Rebekah and Kang, Dong-Woo and Tahbaz, Meghan and Norris, Mary and Uno, Hajime and Ligibel, Jennifer and Guenette, Jeffrey and Christopher, Cameron and Dieli-Conwright, Christina", title="Improving Cognitive Function Through High-Intensity Interval Training in Breast Cancer Patients Undergoing Chemotherapy: Protocol for a Randomized Controlled Trial", journal="JMIR Res Protoc", year="2023", month="Apr", day="7", volume="12", pages="e39740", keywords="cognitive function", keywords="high-intensity interval training", keywords="exercise", keywords="breast cancer", keywords="chemotherapy", keywords="magnetic resonance imaging", keywords="MRI", abstract="Background: More than 75\% of patients with breast cancer treated with chemotherapy experience cognitive impairments (eg, memory and attention problems), commonly known as chemo-brain. Exercise, especially aerobic high-intensity interval training (HIIT), is associated with better cognitive function in healthy populations. However, clinical trials testing the impact of exercise interventions on chemotherapy-induced cognitive decline in patients with cancer are lacking, and the mechanisms through which exercise could improve cognitive function are unclear. Objective: The objective of the Improving Cognitive Function Through High-Intensity Interval Training in Breast Cancer Patients Undergoing Chemotherapy trial is to examine the effects of HIIT on cognitive function in patients with breast cancer undergoing chemotherapy. Methods: This 2-arm, single-center, pilot randomized controlled trial will randomize 50 patients with breast cancer undergoing chemotherapy to HIIT or attention control. The HIIT group will perform a supervised 16-week, thrice-weekly intervention, with each session including a 5-minute warm-up at 10\% maximal power output (POmax), 10 sets of alternating 1-minute high-intensity (90\% POmax) and 1-minute recovery (10\% POmax) intervals, and a 5-minute cooldown (10\% POmax). The attention control group will receive a stretching program with no exercise components and be asked to maintain their exercise levels for 16 weeks. The primary outcomes of the study are executive function and memory measured using the National Institutes of Health toolbox and resting-state connectivity and diffusion tensor imaging microstructure evaluated using magnetic resonance imaging. The secondary and tertiary outcomes include cardiorespiratory fitness, body composition, physical fitness, and psychosocial health. The study has been approved by the institutional review board of the Dana-Farber Cancer Institute (20-222). Results: The trial was funded in January 2019, with recruitment started in June 2021. As of May 2022, a total of 4 patients have consented and been randomized (n=2, 50\% to exercise; n=1, 25\% to control; and n=1, 25\% nonrandomized). Trial completion is expected in January 2024. Conclusions: This first-of-its-kind study incorporates a novel exercise intervention (ie, HIIT) and comprehensive cognitive measures. If positive, our findings will establish the pilot efficacy of HIIT on chemotherapy-induced cognitive function in patients with breast cancer, providing the foundation for future larger phase-II and phase-III trials to confirm the findings and potentially establish HIIT as a standard of care for women undergoing chemotherapy for breast cancer. Trial Registration: ClinicalTrials.gov NCT04724499; https://clinicaltrials.gov/ct2/show/NCT04724499 International Registered Report Identifier (IRRID): DERR1-10.2196/39740 ", doi="10.2196/39740", url="https://www.researchprotocols.org/2023/1/e39740", url="http://www.ncbi.nlm.nih.gov/pubmed/37027186" } @Article{info:doi/10.2196/41441, author="McCann, Lisa and Hewitt, Christopher and McMillan, A. Kathryn", title="Developing an e-Prehabilitation System of Care for Young Adults Diagnosed With Cancer: User-Centered Design Study", journal="JMIR Cancer", year="2023", month="Mar", day="30", volume="9", pages="e41441", keywords="digital health", keywords="human factors", keywords="user-centered", keywords="prehabilitation", keywords="young adults", keywords="cancer", abstract="Background: A diagnosis of cancer in adolescence or young adulthood can pose many different and unique challenges for individuals, as well as their families and friends. Drawing on the concept of prehabilitation, the provision of high-quality, accessible, timely, reliable, and appropriate information, care, and support for young adults with cancer and their families is critical to ensure that they feel equipped and empowered to make informed decisions relating to their treatment and care. Increasingly, digital health interventions offer opportunities to augment current health care information and support provision. Co-designing these digital health interventions can help to ensure that they are meaningful and relevant to the patient cohort, thereby maximizing their accessibility and acceptability. Objective: This study had 4 primary interlinked objectives: understand the support needs of young adults with cancer at the time of diagnosis, understand the potential role of a digital health solution to assist in the delivery of prehabilitation for young adults with cancer, identify appropriate technologies and technological platforms for a digital prehabilitation system of care, and develop a prototype for a digital prehabilitation system of care. Methods: This was a qualitative study using interviews and surveys. Young adults aged 16 to 26 years diagnosed with cancer within the last 3 years were invited to participate in individual user-requirement interviews or surveys. Health care professionals specializing in the treatment and care of young adults with cancer and digital health professionals working in the industry were also interviewed or completed a survey. Consensus feedback interviews were conducted with 3 young adults and 2 health care professionals after the development of the first generation of the prototype app. Results: In total, 7 individual interviews and 8 surveys were completed with young adults with a range of cancer diagnoses. Moreover, 6 individual interviews and 9 surveys were completed with health care professionals, and 3 digital health professionals participated in one-on-one interviews. A prototype app with the working name of Cancer Helpmate was developed based on these collective participant data. Overall, feedback from participants across the data collection activities suggests that the concept for the app was positive during these developmental stages. Further insightful ideas for the app's future development were also identified. Conclusions: Young adults with cancer and health care professionals are responsive to the need for more digitally driven services to be developed. Further development of an app such as Cancer Helpmate, which incorporates key features and functionalities directly informed by users, could help to augment the support provided to young adults with cancer. ", doi="10.2196/41441", url="https://cancer.jmir.org/2023/1/e41441", url="http://www.ncbi.nlm.nih.gov/pubmed/36995740" } @Article{info:doi/10.2196/45244, author="Nilsen, Skogstad Tormod and S{\ae}ter, Mali and Sarvari, Imre Sebastian and Reinertsen, Valborg Kristin and Johansen, Hassing Sara and Edvardsen, Rustad Elisabeth and Hall{\'e}n, Jostein and Edvardsen, Elisabeth and Grydeland, May and Kiserud, Essholt Cecilie and Lie, Cathrine Hanne and Solberg, Andr{\'e} Paul and Wisl{\o}ff, Torbj{\o}rn and Sharples, Philip Adam and Raastad, Truls and Haugaa, Hermann Kristina and Thorsen, Lene", title="Effects of Aerobic Exercise on Cardiorespiratory Fitness, Cardiovascular Risk Factors, and Patient-Reported Outcomes in Long-Term Breast Cancer Survivors: Protocol for a Randomized Controlled Trial", journal="JMIR Res Protoc", year="2023", month="Mar", day="15", volume="12", pages="e45244", keywords="breast cancer", keywords="cardiooncology", keywords="cardiorespiratory fitness", keywords="exercise medicine", abstract="Background: Anthracycline-based chemotherapy has been mainstay of adjuvant breast cancer therapy for decades. Although effective, anthracyclines place long-term breast cancer survivors at risk of late effects, such as reduced cardiorespiratory fitness and increased risk of cardiovascular disease. Previous research has shown beneficial effects of exercise training on cardiorespiratory fitness, but the effects of exercise on limiting factors for cardiorespiratory fitness, cardiovascular risk factors, and patient-reported outcomes in long-term survivors are less clear. Whether previous exposure to breast cancer therapy modulates the effects of exercise is also unknown. Objective: The primary aim of the CAUSE (Cardiovascular Survivors Exercise) trial is to examine the effect of aerobic exercise on cardiorespiratory fitness in anthracycline-treated long-term breast cancer survivors. Secondary aims are to examine effects of exercise training on limiting factors for cardiorespiratory fitness, cardiovascular risk factors, and patient-reported outcomes, and to compare baseline values and effects of exercise training between similar-aged women with and those without prior breast cancer. A third aim is to examine the 24-month postintervention effects of aerobic exercise on primary and secondary outcomes. Methods: The CAUSE trial is a 2-armed randomized controlled trial, where 140 long-term breast cancer survivors, 8-12 years post diagnosis, are assigned to a 5-month nonlinear aerobic exercise program with 3 weekly sessions or to standard care. Seventy similar-aged women with no history of cancer will undergo the same exercise program. Cardiorespiratory fitness measured as peak oxygen consumption (VO2peak), limiting factors for VO2peak (eg, cardiac function, pulmonary function, hemoglobin mass, blood volume, and skeletal muscle characteristics), cardiovascular risk factors (eg, hypertension, diabetes, dyslipidemia, obesity, physical activity level, and smoking status), and patient-reported outcomes (eg, body image, fatigue, mental health, and health-related quality of life) will be assessed at baseline, post intervention, and 24 months post intervention. Results: A total of 209 patients were included from October 2020 to August 2022, and postintervention assessments were completed in January 2023. The 24-month follow-up will be completed in February 2025. Conclusions: The findings from the CAUSE trial will provide novel scientific understanding of the potential benefits of exercise training in long-term breast cancer survivors. Trial Registration: ClinicalTrials.gov NCT04307407; https://clinicaltrials.gov/ct2/show/NCT04307407 International Registered Report Identifier (IRRID): DERR1-10.2196/45244 ", doi="10.2196/45244", url="https://www.researchprotocols.org/2023/1/e45244", url="http://www.ncbi.nlm.nih.gov/pubmed/36920460" } @Article{info:doi/10.2196/44197, author="Zhang, Xupin and Tao, Xinqi and Ji, Bingxiang and Wang, Renwu and S{\"o}rensen, Silvia", title="The Success of Cancer Crowdfunding Campaigns: Project and Text Analysis", journal="J Med Internet Res", year="2023", month="Mar", day="3", volume="25", pages="e44197", keywords="cancer", keywords="GoFundme", keywords="fundraising", keywords="emotional content", keywords="sentiment analysis", keywords="campaign features", keywords="crowdfunding", keywords="gender", abstract="Background: Recent studies have analyzed the factors that contribute to variations in the success of crowdfunding campaigns for a specific cancer type; however, little is known about the influential factors among crowdfunding campaigns for multiple cancers. Objective: The purpose of this study was to examine the relationship between project features and the success of cancer crowdfunding campaigns and to determine whether text features affect campaign success for various cancers. Methods: Using cancer-related crowdfunding projects on the GoFundMe website, we transformed textual descriptions from the campaigns into structured data using natural language processing techniques. Next, we used penalized logistic regression and correlation analyses to examine the influence of project and text features on fundraising project outcomes. Finally, we examined the influence of campaign description sentiment on crowdfunding success using Linguistic Inquiry and Word Count software. Results: Campaigns were significantly more likely to be successful if they featured a lower target amount (Goal amount, $\beta$=?1.949, z score=?82.767, P<.001) for fundraising, a higher number of previous donations, agency (vs individual) organizers, project pages containing updates, and project pages containing comments from readers. The results revealed an inverted U-shaped relationship between the length of the text and the amount of funds raised. In addition, more spelling mistakes negatively affected the funds raised (Number of spelling errors, $\beta$=?1.068, z score=?38.79, P<.001). Conclusions: Difficult-to-treat cancers and high-mortality cancers tend to trigger empathy from potential donors, which increases the funds raised. Gender differences were observed in the effects of emotional words in the text on the amount of funds raised. For cancers that typically occur in women, links between emotional words used and the amount of funds raised were weaker than for cancers typically occurring among men. ", doi="10.2196/44197", url="https://www.jmir.org/2023/1/e44197", url="http://www.ncbi.nlm.nih.gov/pubmed/36692283" } @Article{info:doi/10.2196/38758, author="Moradian, Saeed and Maguire, Roma and Liu, Geoffrey and Krzyzanowska, K. Monika and Butler, Marcus and Cheung, Chantal and Signorile, Marisa and Gregorio, Nancy and Ghasemi, Shiva and Howell, Doris", title="Promoting Self-management and Patient Activation Through eHealth: Protocol for a Systematic Literature Review and Meta-analysis", journal="JMIR Res Protoc", year="2023", month="Mar", day="2", volume="12", pages="e38758", keywords="digital health", keywords="cancer supportive care", keywords="cancer-related symptoms", keywords="self-efficacy", keywords="supported self-management", abstract="Background: Major advances in different cancer treatment modalities have been made, and people are now living longer with cancer. However, patients with cancer experience a range of physical and psychological symptoms during and beyond cancer treatment. New models of care are needed to combat this rising challenge. A growing body of evidence supports the effectiveness of eHealth interventions in the delivery of supportive care to people living with the complexities of chronic health conditions. However, reviews on the effects of eHealth interventions are scarce in the field of cancer-supportive care, particularly for interventions with the aim of empowering patients to manage cancer treatment--related symptoms. For this reason, this protocol has been developed to guide a systematic review and meta-analysis to assess the effectiveness of eHealth interventions for supporting patients with cancer in managing cancer-related symptoms. Objective: This systematic review with meta-analysis is conducted with the aim of identifying eHealth-based self-management intervention studies for adult patients with cancer and evaluating the efficacy of eHealth-based self-management tools and platforms in order to synthesize the empirical evidence on self-management and patient activation through eHealth. Methods: A systematic review with meta-analysis and methodological critique of randomized controlled trials is conducted following Cochrane Collaboration methods. Multiple data sources are used to identify all potential research sources for inclusion in the systematic review: (1) electronic databases such as MEDLINE, (2) forward reference searching, and (3) gray literature. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines for conducting the review were followed. The PICOS (Population, Interventions, Comparators, Outcomes, and Study Design) framework is used to identify relevant studies. Results: The literature search yielded 10,202 publications. The title and abstract screening were completed in May 2022. Data will be summarized, and if possible, meta-analyses will be performed. It is expected to finalize this review by Winter 2023. Conclusions: The results of this systematic review will provide the latest data on leveraging eHealth interventions and offering effective and sustainable eHealth care, both of which have the potential to improve quality and efficiency in cancer-related symptoms. Trial Registration: PROSPERO 325582; https://www.crd.york.ac.uk/prospero/display\_record.php?RecordID=325582 International Registered Report Identifier (IRRID): DERR1-10.2196/38758 ", doi="10.2196/38758", url="https://www.researchprotocols.org/2023/1/e38758", url="http://www.ncbi.nlm.nih.gov/pubmed/36862481" } @Article{info:doi/10.2196/42250, author="Ayyoubzadeh, Mohammad Seyed and Baniasadi, Tayebeh and Shirkhoda, Mohammad and Rostam Niakan Kalhori, Sharareh and Mohammadzadeh, Niloofar and Roudini, Kamran and Ghalehtaki, Reza and Memari, Fereidoon and Jalaeefar, Amirmohsen", title="Remote Monitoring of Colorectal Cancer Survivors Using a Smartphone App and Internet of Things--Based Device: Development and Usability Study", journal="JMIR Cancer", year="2023", month="Feb", day="15", volume="9", pages="e42250", keywords="eHealth", keywords="telemedicine", keywords="colorectal cancer", keywords="cancer survivor", keywords="IoT", keywords="mHealth", keywords="patient monitoring", keywords="remote monitoring", keywords="postdischarge care", keywords="cancer", keywords="patient care", keywords="cancer care", keywords="postoperative complications", abstract="Background: Patients with colorectal cancer who undergo surgery face many postoperative problems. These problems include the risk of relapse, side effects, and long-term complications. Objective: This study sought to design and develop a remote monitoring system as a technological solution for the postdischarge care of these patients. Methods: This research was conducted in 3 main steps: system feature extraction, system design, and evaluation. After feature extraction from a systematic review, the necessary features were defined by 18 clinical experts in Iran. In the next step, the architecture of the system was designed based on the requirements; the software and hardware parts of the system were embedded in the architecture, then the software system components were drawn using the unified modeling language diagrams, and the details of software system implementation were identified. Regarding the hardware design, different accessible hardware modules were evaluated, and suitable ones were selected. Finally, the usability of the system was evaluated by demonstrating it over a Skype virtual meeting session and using Nilsen's usability principles. Results: A total of 21 mandatory features in 5 main categories, including patient information registration, periodic monitoring of health parameters, education, reminders, and assessments, were defined and validated for the system. The software was developed using an ASP.Net core backend, a Microsoft SQL Server database, and an Ionic frontend alongside the Angular framework, to build an Android app. The user roles of the system included 3 roles: physicians, patients, and the system administrator. The hardware was designed to contain an Esp8266 as the Internet of Things module, an MLX90614 infrared temperature sensor, and the Maxim Integrated MAX30101 sensor for sensing the heartbeat. The hardware was designed in the shape of a wristband device using SolidWorks 2020 and printed using a 3D printer. The firmware of the hardware was developed in Arduino with the capability of firmware over the air. In evaluating the software system from the perspective of usability, the system received an average score of 3.8 out of 5 from 4 evaluators. Conclusions: Sensor-based telemonitoring systems for patients with colorectal cancer after surgery are possible solutions that can make the process automatic for patients and caregivers. The apps for remote colorectal patient monitoring could be designed to be useful; however, more research regarding the developed system's implementation in clinic settings and hospitals is required to understand the probable barriers and limitations. ", doi="10.2196/42250", url="https://cancer.jmir.org/2023/1/e42250", url="http://www.ncbi.nlm.nih.gov/pubmed/36790851" } @Article{info:doi/10.2196/42783, author="Sanger, Sally and Duffin, Suzanne and Gough, E. Rosemarie and Bath, A. Peter", title="Use of Online Health Forums by People Living With Breast Cancer During the COVID-19 Pandemic: Thematic Analysis", journal="JMIR Cancer", year="2023", month="Feb", day="7", volume="9", pages="e42783", keywords="online health forum", keywords="breast cancer", keywords="COVID-19", keywords="pandemic", keywords="discussion forum", keywords="coronavirus", keywords="web-based communities", keywords="information use", abstract="Background: At the time of the UK COVID-19 lockdowns, online health forums (OHFs) were one of the relatively few remaining accessible sources of peer support for people living with breast cancer. Cancer services were heavily affected by the pandemic in many ways, including the closure of many of the customary support services. Previous studies indicate that loneliness, anxiety, distress, and depression caused by COVID-19 were common among people living with breast cancer, and this suggests that the role of OHFs in providing users with support, information, and empathy could have been of increased importance at that time. Objective: This study aimed to examine how people living with breast cancer shared information, experiences, and emotions in an OHF during the COVID-19 pandemic. Methods: This qualitative study thematically analyzed posts from the discussion forums of an OHF provided by the UK charity, Breast Cancer Now. We selected 1053 posts from the time of 2 UK lockdowns: March 16, 2020, to June 15, 2020 (lockdown 1), and January 6, 2021, to March 8, 2021 (lockdown 3), for analysis, from 2 of the forum's boards (for recently diagnosed people and for those undergoing chemotherapy). We analyzed the data using the original 6 steps for thematic analysis by Braun and Clarke but by following a codebook approach. Descriptive statistics for posts were also derived. Results: We found that COVID-19 amplified the forum's value to its users. As patients with cancer, participants were in a situation that was ``bad enough already,'' and the COVID-19 pandemic heightened this difficult situation. The forum's value, which was already high for the information and peer support it provided, increased because COVID-19 caused some special information needs that forum users were uniquely well placed to fulfill as people experiencing the combined effects of having breast cancer during the pandemic. The forum also met the emotional needs generated by the COVID-19 pandemic and was valued as a place where loneliness during the pandemic may be relieved and users' spirits lifted in a variety of ways specific to this period. We found some differences in use between the 2 periods and the 2 boards---most noticeable was the great fear and anxiety expressed at the beginning of lockdown 1. Both the beginning and end of lockdown periods were particularly difficult for participants, with the ends seen as potentially increasing isolation. Conclusions: The forums were an important source of support and information to their users, with their value increasing during the lockdowns for a variety of reasons. Our findings will be helpful to organizations offering OHFs and to health care workers advising people living with breast cancer about sources of support. ", doi="10.2196/42783", url="https://cancer.jmir.org/2023/1/e42783", url="http://www.ncbi.nlm.nih.gov/pubmed/36473015" } @Article{info:doi/10.2196/39996, author="Manne, L. Sharon and Imanguli, Matin and Kashy, Deborah and Pesanelli, Morgan and Frederick, Sara and Van Cleave, H. Janet and Paddock, Lisa and Hudson, Shawna and Steinberg, Michael and Clifford, Patrick and Domider, Mara and Singh, Neetu", title="Enhancing Self-care Among Oral Cancer Survivors: Protocol for the Empowered Survivor Trial", journal="JMIR Res Protoc", year="2023", month="Jan", day="20", volume="12", pages="e39996", keywords="oral cancer", keywords="cancer survivorship", keywords="quality of life", keywords="digital interventions", abstract="Background: Survivors of oral cavity and oropharyngeal cancer frequently experience difficulties in swallowing; tasting; speaking; chewing; and maintaining comfortable movements of the head, neck, and shoulder. Engagement in regular self-care can reduce further loss of function and mitigate late effects. Despite the substantial self-care requirements, there are no empirically based interventions to enhance the skills and confidence of these survivors in managing their ongoing care. Objective: The aim of this study is to describe the rationale and methodology for a randomized controlled trial evaluating Empowered Survivor (ES) versus Springboard Beyond Cancer, a general web-based program for cancer survivors, on self-efficacy in managing care, preparedness for managing survivorship, and health-related quality of life (QOL). Methods: This study will recruit a total of 600 individuals who were diagnosed with oral cavity or oropharyngeal cancer in the past 3 years and are currently cancer free primarily from state cancer registries; these individuals will be randomly assigned to either the ES or Springboard Beyond Cancer condition. The participants complete measures of self-efficacy in managing care, preparedness for survivorship, health-related QOL, and engagement in oral self-examination and head and neck strengthening and flexibility exercises at baseline and 2 and 6 months after baseline. The primary aim of this study is to evaluate the impact of ES versus Springboard Beyond Cancer on self-efficacy, preparedness, and health-related QOL. The secondary aim is to examine the mediators and moderators of ES's impact on self-efficacy in managing care, preparedness, and health-related QOL at 6 months. The exploratory aim is to conduct a process evaluation of ES to identify potential oncology or community settings for future implementation. Results: Multilevel modeling will be used to examine whether there are significant differences between the ES and Springboard Beyond Cancer interventions over time. Mediational models will evaluate the indirect effects of ES on outcomes. Quantitative analyses will evaluate the predictors of ES use, and qualitative analyses will evaluate the preferred timing and settings for the implementation of ES. Conclusions: This randomized controlled trial evaluates a completely web-based intervention, ES, versus a general web-based program for cancer survivors, Springboard Beyond Cancer, on self-efficacy in managing care, preparedness for managing survivorship, and health-related QOL and identifies the putative mediators and moderators of the intervention's effects. If an effect on the primary outcomes is illustrated, the next step could be an implementation trial to evaluate the intervention's uptake in and impact on an oncology care setting or nonprofit organizations. Trial Registration: ClincalTrials.gov NCT04713449; https://clinicaltrials.gov/ct2/show/NCT04713449 International Registered Report Identifier (IRRID): DERR1-10.2196/39996 ", doi="10.2196/39996", url="https://www.researchprotocols.org/2023/1/e39996", url="http://www.ncbi.nlm.nih.gov/pubmed/36662561" } @Article{info:doi/10.2196/42245, author="Basch, H. Corey and Hillyer, C. Grace and Yalamanchili, Bhavya and Morris, Aldean", title="How TikTok Is Being Used to Help Individuals Cope With Breast Cancer: Cross-sectional Content Analysis", journal="JMIR Cancer", year="2022", month="Dec", day="6", volume="8", number="4", pages="e42245", keywords="TikTok", keywords="breast cancer", keywords="social media", keywords="short video apps", keywords="social support", keywords="content analysis", keywords="video", keywords="patient support", keywords="medical information", keywords="health information", keywords="peer support", keywords="online conversation", keywords="online health information", abstract="Background: Acknowledging the popularity of TikTok, how quickly medical information can spread, and how users seek support on social media, there is a clear lack of research on breast cancer conversations on TikTok. There is a paucity of information on how these videos can advocate for those impacted by breast cancer as a means to provide support and information as well as raise awareness. Objective: The purpose of this cross-sectional content analysis was to describe the content of videos from the hashtag \#breastcancer on TikTok. Content related to breast cancer support and coping, cancer education, and heightening the awareness of breast cancer early detection, prevention, and treatment was evaluated. Methods: This study included 100 of the most viewed TikTok videos related to breast cancer through June 30, 2022. Videos were excluded if they were not in the English language or relevant to the topic being studied. Content was deductively coded into categories related to video characteristics and content topics using a screener based on expert breast cancer information sheets. Univariable analyses were conducted to evaluate differences in video characteristics and content when stratified as advocating or not advocating for breast cancer (yes or no) support, education, and awareness. Results: The cumulative number of views of the videos included in this study was 369,504,590. The majority (n=81, 81\%) of videos were created by patients and loved ones of individuals with breast cancer, and the most commonly discussed topic was breast cancer support (n=88, 88\%), followed by coping with the myriad issues surrounding breast cancer (n=79, 79\%). Overall, <50\% of the videos addressed important issues such as body image (n=48, 48\%), surgery (n=46, 46\%), medication and therapy (n=41, 41\%), or the stigma associated with a breast cancer diagnosis (n=44, 44\%); however, in videos that were advocacy oriented, body image (40/62, 64\% vs 8/38, 21\%; P<.001), stigma associated with breast cancer (33/62, 53\% vs 11/38, 29\%; P=.02), and breast cancer surgery (36/62, 58\% vs 10/38, 26\%; P=.002) were discussed significantly more often than in videos that did not specifically advocate for breast cancer. Conclusions: The use of videos to display health journeys can facilitate engagement by patients, family members, and loved ones interested in information about challenging conditions. Collectively, these findings highlight the level of peer-to-peer involvement on TikTok and may provide insights for designing breast cancer educational campaigns. ", doi="10.2196/42245", url="https://cancer.jmir.org/2022/4/e42245", url="http://www.ncbi.nlm.nih.gov/pubmed/36472899" } @Article{info:doi/10.2196/39228, author="Huberty, Jennifer and Bhuiyan, Nishat and Puzia, Megan and Joeman, Lynda and Larkey, Linda and Mesa, Ruben", title="Meditation Mobile App Developed for Patients With and Survivors of Cancer: Feasibility Randomized Controlled Trial", journal="JMIR Cancer", year="2022", month="Nov", day="23", volume="8", number="4", pages="e39228", keywords="cancer", keywords="mobile health", keywords="mHealth", keywords="meditation", keywords="feasibility", keywords="mobile phone", abstract="Background: To address the unmet need for a commercial cancer-specific meditation app, we leveraged a long-standing partnership with a consumer-based app (ie, Calm) to develop the first commercial meditation app prototype adapted specifically for the needs of patients with cancer. Input was obtained at both the individual user and clinic levels (ie, patients with and survivors of cancer and health care providers). Objective: This study aimed to determine the feasibility of a cancer-specific meditation app prototype. Methods: Patients with and survivors of cancer who were recruited and enrolled in the feasibility randomized controlled trial were asked to use the prototype app daily (?70 minutes per week) for 4 weeks. Participants completed web-based weekly questionnaires and a final poststudy questionnaire and were asked to participate in an optional web-based poststudy interview. The questionnaires and interviews covered the following feasibility categories: acceptability, demand, practicality, and adaptation. Results: A total of 36 patients with and survivors of cancer completed the baseline questionnaire, 18 completed the final questionnaire, and 6 completed the optional interviews. Weekly and poststudy questionnaires indicated high overall enjoyment, ease of use, and satisfaction with the app content, aesthetics, and graphics. The objective use data indicated that the average total app use rate was 73.39 (SD 7.12) minutes per week. Interviews (N=6) revealed positive and mixed responses to the app prototype and informative differences related to preferences for narrators, emotional content, and meditation teaching but an overall appreciation for the variety of options. Conclusions: The most likely candidates for moving from cancer-specific meditation apps to dissemination are through partnering with the industry, in which name recognition and market distribution are already established (even showing a base of users from the targeted population with cancer). This study established the feasibility of a cancer-specific mobile meditation app prototype for patients with and survivors of cancer, using a commercially available app. The quantitative and qualitative data demonstrated the acceptability, demand, practicality, and adaptation of the prototype. Improvements suggested by the participants will be considered in the final app design before testing the efficacy of the app in a future study. Trial Registration: Clinicaltrials.gov NCT05459168; https://clinicaltrials.gov/ct2/show/record/NCT05459168 ", doi="10.2196/39228", url="https://cancer.jmir.org/2022/4/e39228", url="http://www.ncbi.nlm.nih.gov/pubmed/36416880" } @Article{info:doi/10.2196/40059, author="Wang, Luyao and Chen, Xing and Peng, Yueyang and Zhang, Kun and Ma, Jun and Xu, Lin and Liu, Zixuan and Liu, Li and Luo, Yang and Gu, Can", title="Effect of a 4-Week Internet-Delivered Mindfulness-Based Cancer Recovery Intervention on the Symptom Burden and Quality of Life of Patients With Breast Cancer: Randomized Controlled Trial", journal="J Med Internet Res", year="2022", month="Nov", day="22", volume="24", number="11", pages="e40059", keywords="mindfulness-based cancer recovery", keywords="mindfulness-based intervention", keywords="cancer-related symptom", keywords="quality of life", keywords="breast cancer", keywords="internet-delivered intervention", keywords="mobile phone", abstract="Background: Mindfulness-based interventions (MBIs) can improve the symptoms and psychological well-being of patients with breast cancer. However, standard MBIs are an 8-week program delivered face-to-face, which may be inconvenient for patients with cancer. Many attempts have been made to adapt MBIs to increase their accessibility for patients with cancer while maintaining their therapeutic components and efficacy. Objective: This study aimed to investigate the effectiveness of a 4-week internet-delivered mindfulness-based cancer recovery (iMBCR) program in reducing symptom burden and enhancing the health-related quality of life (HRQoL) of patients with breast cancer. Methods: A total of 103 postoperative patients with breast cancer (stages 0 to IV) were randomly assigned to an iMBCR group (4-week iMBCR; n=51, 49.5\%) or a control group (usual care and 4-week program of health education information; n=52, 50.5\%). The study outcomes included symptom burden and HRQoL, as measured by the MD Anderson Symptom Inventory and the Functional Assessment of Cancer Therapy-Breast scale. All data were collected at baseline (T0), after the intervention (T1), and at 1-month follow-up (T2). Data analysis followed the intention-to-treat principle. Linear mixed models were used to assess the effects over time of the iMBCR program. Results: Participants in the iMBCR group had significantly larger decreases in symptom burden than those in the control group at T1 (mean difference --11.67, 95\% CI --16.99 to --6.36), and the decreases were maintained at T2 (mean difference --11.83, 95\% CI --18.19 to --5.46). The HRQoL score in the iMBCR group had significantly larger improvements than that in the control group at T1 and T2 (mean difference 6.66, 95\% CI 3.43-9.90 and mean difference 11.94, 95\% CI 7.56-16.32, respectively). Conclusions: Our preliminary findings suggest that the iMBCR program effectively improved the symptom burden and HRQoL of patients with breast cancer, and the participants in the iMBCR group demonstrated good adherence and completion rates. These results indicate that the iMBCR intervention might be a promising way to reduce symptom burden and improve HRQoL of patients with cancer. Trial Registration: Chinese Clinical Trial Registry ChiCTR2000038980; http://www.chictr.org.cn/showproj.aspx?proj=62659 ", doi="10.2196/40059", url="https://www.jmir.org/2022/11/e40059", url="http://www.ncbi.nlm.nih.gov/pubmed/36413385" } @Article{info:doi/10.2196/39725, author="Conduit, Ciara and Guo, Christina and Smith, B. Allan and Rincones, Orlando and Baenziger, Olivia and Thomas, Benjamin and Goad, Jeremy and Lenaghan, Dan and Lawrentschuk, Nathan and Wong, Lih-Ming and Corcoran, M. Niall and Ross, Margaret and Gibbs, Peter and O'Haire, Sophie and Anton, Angelyn and Liow, Elizabeth and Lewin, Jeremy and Tran, Ben", title="Role for a Web-Based Intervention to Alleviate Distress in People With Newly Diagnosed Testicular Cancer: Mixed Methods Study", journal="JMIR Cancer", year="2022", month="Oct", day="28", volume="8", number="4", pages="e39725", keywords="testicular germ cell tumor", keywords="cancer survivors", keywords="emotional distress", keywords="anxiety disorders", keywords="depression", abstract="Background: Distress is common immediately after diagnosis of testicular cancer. It has historically been difficult to engage people in care models to alleviate distress because of complex factors, including differential coping strategies and influences of social gender norms. Existing support specifically focuses on long-term survivors of testicular cancer, leaving an unmet need for age-appropriate and sex-sensitized support for individuals with distress shortly after diagnosis. Objective: We evaluated a web-based intervention, Nuts \& Bolts, designed to provide support and alleviate distress after diagnosis of testicular cancer. Methods: Using a mixed methods design to evaluate the acceptability, feasibility, and impact of Nuts \& Bolts on distress, we randomly assigned participants with recently diagnosed testicular cancer (1:1) access to Nuts \& Bolts at the time of consent (early) or alternatively, 1 week later (day 8; delayed). Participants completed serial questionnaires across a 4- to 5-week period to evaluate levels of distress (measured by the National Comprehensive Cancer Network Distress Thermometer [DT]; scored 0-10), anxiety, and depression (Hospital Anxiety and Depression Score [HADS]--Anxiety and HADS-Depression; each scored 0-21). The primary end point was change in distress between consent and day 8. Secondary end points of distress, anxiety, and depression were assessed at defined intervals during follow-up. Optional, semistructured interviews occurring after completion of quantitative assessments were thematically analyzed. Results: Overall, 39 participants were enrolled in this study. The median time from orchidectomy to study consent was 14.8 (range 3-62) days. Moderate or high levels of distress evaluated using DT were reported in 58\% (23/39) of participants at consent and reduced to 13\% (5/38) after 1 week of observation. Early intervention with Nuts \& Bolts did not significantly decrease the mean DT score by day 8 compared with delayed intervention (early: 4.56-2.74 vs delayed: 4.47-2.74; P=.85), who did not yet have access to the website. A higher baseline DT score was significantly predictive of reduction in DT score during this period (P<.001). Median DT, HADS-Anxiety, and HADS-Depression scores reduced between orchidectomy and 3 weeks postoperatively and then remained stable throughout the observation period. Thematic analysis of 16 semistructured interviews revealed 4 key themes, ``Nuts \& Bolts is a helpful tool,'' ``Maximizing benefits of the website,'' ``Whirlwind of diagnosis and readiness for treatment,'' and ``Primary stressors and worries,'' as well as multiple subthemes. Conclusions: Distress is common following the diagnosis of testicular cancer; however, it decreases over time. Nuts \& Bolts was considered useful, acceptable, and relevant by individuals diagnosed with testicular cancer, with strong support for the intervention rendered by thematic analyses of semistructured interviews. The best time to introduce support, such as Nuts \& Bolts, is yet to be determined; however, it may be most beneficial as soon as testicular cancer is strongly suspected or diagnosed. ", doi="10.2196/39725", url="https://cancer.jmir.org/2022/4/e39725", url="http://www.ncbi.nlm.nih.gov/pubmed/36306156" } @Article{info:doi/10.2196/34564, author="Pettini, Greta and Sanchini, Virginia and Pat-Horenczyk, Ruth and Sousa, Berta and Masiero, Marianna and Marzorati, Chiara and Galimberti, Enrica Viviana and Munzone, Elisabetta and Mattson, Johanna and Vehmanen, Leena and Utriainen, Meri and Roziner, Ilan and Lemos, Raquel and Frasquilho, Diana and Cardoso, Fatima and Oliveira-Maia, J. Albino and Kolokotroni, Eleni and Stamatakos, Georgios and Leskel{\"a}, Riikka-Leena and Haavisto, Ira and Salonen, Juha and Richter, Robert and Karademas, Evangelos and Poikonen-Saksela, Paula and Mazzocco, Ketti", title="Predicting Effective Adaptation to Breast Cancer to Help Women BOUNCE Back: Protocol for a Multicenter Clinical Pilot Study", journal="JMIR Res Protoc", year="2022", month="Oct", day="12", volume="11", number="10", pages="e34564", keywords="resilience", keywords="personality", keywords="coping", keywords="decision-making", keywords="cancer", keywords="quality of life", abstract="Background: Despite the continued progress of medicine, dealing with breast cancer is becoming a major socioeconomic challenge, particularly due to its increasing incidence. The ability to better manage and adapt to the entire care process depends not only on the type of cancer but also on the patient's sociodemographic and psychological characteristics as well as on the social environment in which a person lives and interacts. Therefore, it is important to understand which factors may contribute to successful adaptation to breast cancer. To our knowledge, no studies have been performed on the combination effect of multiple psychological, biological, and functional variables in predicting the patient's ability to bounce back from a stressful life event, such as a breast cancer diagnosis. Here we describe the study protocol of a multicenter clinical study entitled ``Predicting Effective Adaptation to Breast Cancer to Help Women to BOUNCE Back'' or, in short, BOUNCE. Objective: The aim of the study is to build a quantitative mathematical model of factors associated with the capacity for optimal adjustment to cancer and to study resilience through the cancer continuum in a population of patients with breast cancer. Methods: A total of 660 women with breast cancer will be recruited from five European cancer centers in Italy, Finland, Israel, and Portugal. Biomedical and psychosocial variables will be collected using the Noona Healthcare platform. Psychosocial, sociodemographic, lifestyle, and clinical variables will be measured every 3 months, starting from presurgery assessment (ie, baseline) to 18 months after surgery. Temporal data mining, time-series prediction, sequence classification methods, clustering time-series data, and temporal association rules will be used to develop the predictive model. Results: The recruitment process stared in January 2019 and ended in November 2021. Preliminary results have been published in a scientific journal and are available for consultation on the BOUNCE project website. Data analysis and dissemination of the study results will be performed in 2022. Conclusions: This study will develop a predictive model that is able to describe individual resilience and identify different resilience trajectories along the care process. The results will allow the implementation of tailored interventions according to patients' needs, supported by eHealth technologies. Trial Registration: ClinicalTrials.gov NCT05095675; https://clinicaltrials.gov/ct2/show/NCT05095675 International Registered Report Identifier (IRRID): DERR1-10.2196/34564 ", doi="10.2196/34564", url="https://www.researchprotocols.org/2022/10/e34564", url="http://www.ncbi.nlm.nih.gov/pubmed/36222801" } @Article{info:doi/10.2196/37518, author="Renner, Simon and Loussikian, Paul and Foulqui{\'e}, Pierre and Arnould, Benoit and Marrel, Alexia and Barbier, Valentin and Mebarki, Adel and Sch{\"u}ck, St{\'e}phane and Bharmal, Murtuza", title="Perceived Unmet Needs in Patients Living With Advanced Bladder Cancer and Their Caregivers: Infodemiology Study Using Data From Social Media in the United States", journal="JMIR Cancer", year="2022", month="Sep", day="20", volume="8", number="3", pages="e37518", keywords="real-world evidence", keywords="unmet needs", keywords="quality of life", keywords="social media", keywords="bladder cancer", keywords="caregivers", abstract="Background: Locally advanced or metastatic bladder cancer (BC), which is generally termed advanced BC (aBC), has a very poor prognosis, and in addition to its physical symptoms, it is associated with emotional and social challenges. However, few studies have assessed the unmet needs and burden of aBC from patient and caregiver perspectives. Infodemiology, that is, epidemiology based on internet health-related content, can help obtain more insights on patients' and caregivers' experiences with aBC. Objective: The study aimed to identify the main discussion themes and the unmet needs of patients with aBC and their caregivers through a mixed methods analysis of social media posts. Methods: Social media posts were collected between January 2015 and April 2021 from US geolocalized sites using specific keywords for aBC. Automatic natural language processing (regular expressions and machine learning) methods were used to filter out irrelevant content and identify verbatim posts from patients and caregivers. The verbatim posts were analyzed to identify main discussion themes using biterm topic modeling. Difficulties or unmet needs were further explored using qualitative research methods by 2 independent annotators until saturation of concepts. Results: A total of 688 posts from 262 patients and 1214 posts from 679 caregivers discussing aBC were identified. Analysis of 340 randomly selected patient posts and 423 randomly selected caregiver posts uncovered 33 unique unmet need categories among patients and 36 among caregivers. The main unmet patient needs were related to challenges regarding adverse events (AEs; 28/95, 29\%) and the psychological impact of aBC (20/95, 21\%). Other patient unmet needs identified were prognosis or diagnosis errors (9/95, 9\%) and the need for better management of aBC symptoms (9/95, 9\%). The main unmet caregiver needs were related to the psychological impacts of aBC (46/177, 26.0\%), the need for support groups and to share experiences between peers (28/177, 15.8\%), and the fear and management of patient AEs (22/177, 12.4\%). Conclusions: The combination of manual and automatic methods allowed the extraction and analysis of several hundreds of social media posts from patients with aBC and their caregivers. The results highlighted the emotional burden of cancer for both patients and caregivers. Additional studies on patients with aBC and their caregivers are required to quantitatively explore the impact of this disease on quality of life. ", doi="10.2196/37518", url="https://cancer.jmir.org/2022/3/e37518", url="http://www.ncbi.nlm.nih.gov/pubmed/36125861" } @Article{info:doi/10.2196/37606, author="Shuldiner, Jennifer and Shah, Nida and Reis, Catherine and Chalmers, Ian and Ivers, Noah and Nathan, Paul", title="Developing a Provincial Surveillance and Support System for Childhood Cancer Survivors: Multiphase User-Centered Design Study", journal="JMIR Hum Factors", year="2022", month="Sep", day="13", volume="9", number="3", pages="e37606", keywords="design", keywords="cancer screening", keywords="childhood cancer survivor", keywords="late effects", keywords="surveillance", keywords="cancer", keywords="cancer survivor", keywords="morbidity", keywords="mortality", keywords="cancer treatment", keywords="mammogram", keywords="echocardiogram", abstract="Background: Survivors of childhood cancer are at lifelong risk of morbidity (such as new cancers or heart failure) and premature mortality due to their cancer treatment. These are termed late effects. Therefore, they require lifelong, risk-tailored surveillance. However, most adult survivors of childhood cancer do not complete recommended surveillance tests such as mammograms or echocardiograms. Objective: In partnership with survivors, family physicians, and health system partners, we are designing a provincial support system for high-priority tests informed by principles of implementation science, behavioral science, and design thinking. Methods: Our multiphase process was structured as follows. Step 1 consisted of a qualitative study to explore intervention components essential to accessing surveillance tests. Step 2 comprised a workshop with childhood cancer survivors, family physicians, and health system stakeholders that used the Step 1 findings and ``personas'' (a series of fictional but data-informed characters) to develop and tailor the intervention for different survivor groups. Step 3 consisted of intervention prototype development, and Step 4 involved iterative user testing. Results: The qualitative study of 30 survivors and 7 family physicians found a high desire for information on surveillance for late effects. Respondents indicated that the intervention should help patients book appointments when they are due in addition to providing personalized information. Insights from the workshop included the importance of partnering with both family physicians and survivorship clinics and providing emotional support for survivors who may experience distress upon learning of their risk for late effects. In our user-testing process, prototypes went through iterations that incorporated feedback from users regarding acceptability, usability, and functionality. We sought to address the needs of survivors and physicians while balancing the capacity and infrastructure available for a lifelong intervention via our health system partners. Conclusions: In partnership with childhood cancer survivors, family physicians, and health system partners, we elucidated the barriers and enablers to accessing guideline-recommended surveillance tests and designed a multifaceted solution that will support survivors and their family physicians. The next step is to evaluate the intervention in a pragmatic randomized controlled trial. ", doi="10.2196/37606", url="https://humanfactors.jmir.org/2022/3/e37606", url="http://www.ncbi.nlm.nih.gov/pubmed/36099013" } @Article{info:doi/10.2196/39643, author="Chi, Yu and Thaker, Khushboo and He, Daqing and Hui, Vivian and Donovan, Heidi and Brusilovsky, Peter and Lee, Ji Young", title="Knowledge Acquisition and Social Support in Online Health Communities: Analysis of an Online Ovarian Cancer Community", journal="JMIR Cancer", year="2022", month="Sep", day="13", volume="8", number="3", pages="e39643", keywords="online health community", keywords="ovarian cancer", keywords="health information needs", keywords="social support", keywords="knowledge acquisition", abstract="Background: Patients and caregivers widely use online health communities (OHCs) to acquire knowledge from peers. Questions posed in OHCs reflect participants' learning objectives and differ in their level of cognitive complexity. However, little is known about the topics and levels of participants' learning objectives and the corresponding support they receive from members of OHCs. Objective: This study aimed to investigate the knowledge acquisition of patients and caregivers in an OHC. Specifically, we investigated the distribution and topics of posts with learning objectives at different cognitive complexity levels, the type and amount of social support provided to meet users' learning objectives at different cognitive complexity levels, and the influence of social support on the change in learning objectives. Methods: We collected 10 years of discussion threads from one of the most active ovarian cancer (OvCa) OHCs. A mixed methods approach was used, including qualitative content analysis and quantitative statistical analysis. Initial posts with questions were manually classified into 1 of the 3 learning objectives with increasing cognitive complexity levels, from low to high, based on the Anderson and Krathwohl taxonomy: understand, analyze, and evaluate. Manual content analysis and automatic classification models were used to identify the types of social support in the comments, including emotional support and 5 types of informational support: advice, referral, act, personal experience, and opinion. Results: The original data set contained 909 initial posts and 14,816 comments, and the final data set for the analysis contained 560 posts with questions and 3998 comments. Our results showed that patients with OvCa and their caregivers mainly used OHCs to acquire knowledge for low- to medium-level learning objectives. Of the questions, 82.3\% (461/560) were either understand- or analyze-level questions, in which users were seeking to learn basic facts and medical concepts or draw connections among different situations and conditions. Only 17.7\% (99/560) of the questions were at the evaluate level, in which users asked other OHC members to help them make decisions or judgments. Notably, OvCa treatment was the most popular topic of interest among all the questions, regardless of the level of learning objectives. Regarding the social support received for different levels of learning objectives, significant differences were found in the advice (F2437.84=9.69; P<.001), opinion (F2418.18=11.56; P<.001), and emotional support (F2395.88=3.24; P=.01), as determined by one-way ANOVA, whereby questions at the evaluate level were more likely to receive advice, opinion, and emotional support than questions at the lower levels. Additionally, receiving social support tends to drive users to increase the cognitive complexity of the learning objective in the next post. Conclusions: Our study establishes that OHCs are promising resources for acquiring knowledge of OvCa. Our findings have implications for designing better OHCs that serve the growing OvCa community. ", doi="10.2196/39643", url="https://cancer.jmir.org/2022/3/e39643", url="http://www.ncbi.nlm.nih.gov/pubmed/36099015" } @Article{info:doi/10.2196/37079, author="Yang, Dai-Jie and Lu, Meng-Yao and Chen, Chi-Wen and Liu, Pei-Ching and Hou, I-Ching", title="Development of a Therapeutic Video Game With the MDA Framework to Decrease Anxiety in Preschool-Aged Children With Acute Lymphoblastic Leukemia: Mixed Methods Approach", journal="JMIR Serious Games", year="2022", month="Aug", day="22", volume="10", number="3", pages="e37079", keywords="acute lymphoblastic leukemia", keywords="therapeutic video games", keywords="childhood cancer", keywords="preschoolers", keywords="anxiety", abstract="Background: Preschool-aged children with acute lymphoblastic leukemia (ALL) receive long-term treatment according to the Taiwan Pediatric Oncology Group (TPOG)--ALL 2013 protocol. Severe anxiety and noncompliance ahead of frequent invasive therapies leads to an increase in health care costs. Previous studies have shown that therapeutic video games (TVGs) can decrease the anxiety experienced by children who are ill. To our knowledge, no existing TVG has been designed specifically for preschool-aged children with ALL in Taiwan. Objective: The purpose of this study was to develop a TVG using the popular Mechanics, Dynamics, and Aesthetics (MDA) framework for game design and to investigate the effect of this TVG on the reduction of therapy-related anxiety among preschool-aged children with ALL. Methods: This study used a mixed methods approach over three phases: (1) develop a TVG using the MDA framework, (2) test the reliability of the TVG among three certified children's art therapists, and (3) evaluate the reduction of therapy-related anxiety among participants after using the TVG for 6 weeks, using a two-group, stratified randomized controlled trial at a medical center in northern Taiwan. Eligible preschool-aged children with ALL were randomly assigned 1:1 into an experimental group or a control group. The two groups of subjects received the same usual care, and only the experimental group had access to and used the TVG. The children's anxiety responses were reported by their family caregivers using the face rating scale (FRS). Descriptive analyses, the Fisher exact test, the Pearson chi-square test, and the Mann-Whitney U test were used to statistically analyze the variables. Results: Six mechanics rules supported the dynamics of the TVG using four main features---character, nursery, tasks, and market---in order to complete all of the therapy-related anxiety reduction scenarios and to achieve eight aesthetics goals. The results of reliability test showed that participants found the TVG to be useful and trustworthy for preschool-aged children with ALL (Cronbach $\alpha$=.98). A total of 15 participants were enrolled and randomly allocated to the experimental group (n=7) or the control group (n=8). The average number of TVG log-ins was 37.9 (SD 15.30, range 14-62) in the experimental group. The demographic data showed homogeneity across the two groups regarding age (3 to 5 years), sex (male), risk classification (standard risk), and treatment status (continuation therapy). The mean FRS score was 6.16 (SD 3.31) for the experimental group as compared to 7.45 (SD 2.71) for the control group (P=.04), which represented a significant difference between the groups at the 6-week follow-up. Conclusions: This research provides evidence that using a TVG can decrease anxiety in preschool-aged children with ALL in Taiwan. The TVG could be used to support clinical professionals before they perform invasive therapies. However, it is recommended to increase the statistical power for inference. Trial Registration: ClinicalTrials.gov NCT04199637; https://www.clinicaltrials.gov/ct2/show/NCT04199637 ", doi="10.2196/37079", url="https://games.jmir.org/2022/3/e37079", url="http://www.ncbi.nlm.nih.gov/pubmed/35994340" } @Article{info:doi/10.2196/37502, author="Austin, Judith and Drossaert, C. Constance H. and van Dijk, Jelle and Sanderman, Robbert and B{\o}r{\o}sund, Elin and Mirkovic, Jelena and Schotanus-Dijkstra, Marijke and Peeters, J. Nienke and Van 't Klooster, R. Jan-Willem J. and Schroevers, J. Maya and Bohlmeijer, T. Ernst", title="Integrating Top-down and Bottom-up Requirements in eHealth Development: The Case of a Mobile Self-compassion Intervention for People With Newly Diagnosed Cancer", journal="JMIR Cancer", year="2022", month="Aug", day="1", volume="8", number="3", pages="e37502", keywords="eHealth", keywords="cancer", keywords="self-compassion", keywords="co-design", keywords="requirements", keywords="evidence-based", keywords="mobile phone", abstract="Background: Psychosocial eHealth interventions for people with cancer are promising in reducing distress; however, their results in terms of effects and adherence rates are quite mixed. Developing interventions with a solid evidence base while still ensuring adaptation to user wishes and needs is recommended to overcome this. As most models of eHealth development are based primarily on examining user experiences (so-called bottom-up requirements), it is not clear how theory and evidence (so-called top-down requirements) may best be integrated into the development process. Objective: This study aims to investigate the integration of top-down and bottom-up requirements in the co-design of eHealth applications by building on the development of a mobile self-compassion intervention for people with newly diagnosed cancer. Methods: Four co-design tasks were formulated at the start of the project and adjusted and evaluated throughout: explore bottom-up experiences, reassess top-down content, incorporate bottom-up and top-down input into concrete features and design, and synergize bottom-up and top-down input into the intervention context. These tasks were executed iteratively during a series of co-design sessions over the course of 2 years, in which 15 people with cancer and 7 nurses (recruited from 2 hospitals) participated. On the basis of the sessions, a list of requirements, a final intervention design, and an evaluation of the co-design process and tasks were yielded. Results: The final list of requirements included intervention content (eg, major topics of compassionate mind training such as psychoeducation about 3 emotion systems and main issues that people with cancer encounter after diagnosis such as regulating information consumption), navigation, visual design, implementation strategies, and persuasive elements. The final intervention, Compas-Y, is a mobile self-compassion training comprising 6 training modules and several supportive functionalities such as a mood tracker and persuasive elements such as push notifications. The 4 co-design tasks helped overcome challenges in the development process such as dealing with conflicting top-down and bottom-up requirements and enabled the integration of all main requirements into the design. Conclusions: This study addressed the necessary integration of top-down and bottom-up requirements into eHealth development by examining a preliminary model of 4 co-design tasks. Broader considerations regarding the design of a mobile intervention based on traditional intervention formats and merging the scientific disciplines of psychology and design research are discussed. ", doi="10.2196/37502", url="https://cancer.jmir.org/2022/3/e37502", url="http://www.ncbi.nlm.nih.gov/pubmed/35916691" } @Article{info:doi/10.2196/35893, author="Leung, W. Yvonne and Park, Bomi and Heo, Rachel and Adikari, Achini and Chackochan, Suja and Wong, Jiahui and Alie, Elyse and Gancarz, Mathew and Kacala, Martyna and Hirst, Graeme and de Silva, Daswin and French, Leon and Bender, Jacqueline and Mishna, Faye and Gratzer, David and Alahakoon, Damminda and Esplen, Jane Mary", title="Providing Care Beyond Therapy Sessions With a Natural Language Processing--Based Recommender System That Identifies Cancer Patients Who Experience Psychosocial Challenges and Provides Self-care Support: Pilot Study", journal="JMIR Cancer", year="2022", month="Jul", day="29", volume="8", number="3", pages="e35893", keywords="artificial intelligence", keywords="natural language processing", keywords="online support groups", keywords="supportive care in cancer", keywords="recommender system", abstract="Background: The negative psychosocial impacts of cancer diagnoses and treatments are well documented. Virtual care has become an essential mode of care delivery during the COVID-19 pandemic, and online support groups (OSGs) have been shown to improve accessibility to psychosocial and supportive care. de Souza Institute offers CancerChatCanada, a therapist-led OSG service where sessions are monitored by an artificial intelligence--based co-facilitator (AICF). The AICF is equipped with a recommender system that uses natural language processing to tailor online resources to patients according to their psychosocial needs. Objective: We aimed to outline the development protocol and evaluate the AICF on its precision and recall in recommending resources to cancer OSG members. Methods: Human input informed the design and evaluation of the AICF on its ability to (1) appropriately identify keywords indicating a psychosocial concern and (2) recommend the most appropriate online resource to the OSG member expressing each concern. Three rounds of human evaluation and algorithm improvement were performed iteratively. Results: We evaluated 7190 outputs and achieved a precision of 0.797, a recall of 0.981, and an F1 score of 0.880 by the third round of evaluation. Resources were recommended to 48 patients, and 25 (52\%) accessed at least one resource. Of those who accessed the resources, 19 (75\%) found them useful. Conclusions: The preliminary findings suggest that the AICF can help provide tailored support for cancer OSG members with high precision, recall, and satisfaction. The AICF has undergone rigorous human evaluation, and the results provide much-needed evidence, while outlining potential strengths and weaknesses for future applications in supportive care. ", doi="10.2196/35893", url="https://cancer.jmir.org/2022/3/e35893", url="http://www.ncbi.nlm.nih.gov/pubmed/35904877" } @Article{info:doi/10.2196/37706, author="Adler, F. Rachel and Morales, Paulina and Sotelo, Jocelyn and Magasi, Susan", title="Developing an mHealth App for Empowering Cancer Survivors With Disabilities: Co-design Study", journal="JMIR Form Res", year="2022", month="Jul", day="26", volume="6", number="7", pages="e37706", keywords="user-centered design", keywords="co-design", keywords="mobile health", keywords="mHealth", keywords="cancer survivors", keywords="disabilities", abstract="Background: The transition from active treatment to long-term cancer survivorship leaves the needs of many cancer survivors unaddressed as they struggle with physical, cognitive, psychological, and social consequences of cancer and its treatment. The lack of guidance after treatment has forced cancer survivors to manage long-term effects on their own, which has an impact on their overall health, quality of life, and social participation. Mobile health (mHealth) interventions can be used to promote self-management and evidence-informed education. Objective: This study aims to design an mHealth app for cancer survivors with disabilities that will offer interventions to improve their quality of life and increase their self-efficacy to manage cancer as a chronic condition. Methods: We organized 3 co-design workshops with cancer survivors (n=5). These workshops included persona development based on data from 25 interviews with cancer survivors with disabilities; prototype ideation, where we sketched ideas for the prototype; and prototype development, where participants critiqued, and suggested improvements for, the wireframes. Results: These workshops helped us to define the challenges that cancer survivors with disabilities face as well as important considerations when designing an mHealth app for cancer survivors with disabilities, such as the need for including flexibility, engagement, socialization, and a minimalistic design. We also outline guidelines for other researchers to follow when planning their own co-design workshops, which include allowing more time for discussion among participants, having small participant groups, keeping workshops engaging and inclusive, and letting participants dream big. Conclusions: Using a co-design process aided us in developing a prototype of an mHealth app for cancer survivors with disabilities as well as a list of guidelines that other researchers can use to develop their own co-design workshops and design their app. Furthermore, working together with cancer survivors ensured that the design team had a deeper sense of empathy toward the target users and kept the focus on our ultimate goal: creating something that cancer survivors would want to use and benefit from. Future work will include usability testing of a high-fidelity prototype based on the results of these workshops. ", doi="10.2196/37706", url="https://formative.jmir.org/2022/7/e37706", url="http://www.ncbi.nlm.nih.gov/pubmed/35881439" } @Article{info:doi/10.2196/38300, author="Chin, Stanley and Cavadino, Alana and Akroyd, Amelia and Tennant, Geraldine and Dobson, Rosie and Gautier, Adele and Reynolds, Lisa", title="An Investigation of Virtual Reality Nature Experiences in Patients With Metastatic Breast Cancer: Secondary Analysis of a Randomized Controlled Trial", journal="JMIR Cancer", year="2022", month="Jul", day="22", volume="8", number="3", pages="e38300", keywords="metastatic breast cancer", keywords="virtual reality", keywords="nature connectedness", keywords="intervention", keywords="quality of life", abstract="Background: Connection with nature has well-established physical and psychological benefits. However, women with metastatic breast cancer (MBC) are often unable to access nature because of physical limitations, psychological barriers, and treatment demands. Virtual reality (VR) nature experiences offer an alternative means of connecting with nature and may be of particular benefit to patients with cancer who are house- or hospital-bound. Objective: This study aims to explore whether VR nature experiences are associated with physical and psychological benefits for women with MBC who are disconnected with nature. Methods: This secondary analysis of a previous randomized controlled crossover trial recruited participants from the emailing lists of breast cancer support organizations. Participants were provided VR headsets for daily use in their homes for over 3 weeks. In the first week, participants used 1 of 2 VR nature experiences (Ripple or Happy Place) daily, followed by a 1-week washout period, before using the other VR experience every day for the final week. Outcomes assessed changes between baseline and postintervention scores in quality of life (EQ-5D-5L), pain (Brief Pain Inventory Short Form), fatigue (Functional Assessment of Chronic Illness Therapy-fatigue), depression (Depression, Anxiety, and Stress Scale-depression), anxiety (Depression, Anxiety, and Stress Scale-anxiety), and spiritual well-being (Functional Assessment of Chronic Illness Therapy- Spiritual Well-being) and investigated whether benefits were greater in participants who were not strongly connected with nature at baseline. Results: A total of 38 women with MBC completed the VR interventions and were included in the analyses. Participants reported significantly less fatigue (P=.001), less depression (P<.001), and greater quality of life (P=.02) following the interventions than at baseline. Women with a weaker connection to nature reported greater fatigue (P=.03), depression (P=.006), and anxiety (P=.001), and poorer spirituality (P=.004) than their strongly connected counterparts. Only those with a weaker baseline connection with nature showed improvements in depression following the intervention (P=.03), with similar trends observed in fatigue (P=.07) and quality of life (P=.10). Conclusions: This study provides preliminary evidence that feeling connected with nature is associated with better physical and psychological status in patients with MBC and that VR nature interventions might be beneficial for this clinical population. Future studies should focus on activities that encourage connection with nature (rather than simply exposure to nature) and investigate the aspects of VR nature interventions that have the greatest therapeutic potential. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12619001480178; https://tinyurl.com/et6z3vac ", doi="10.2196/38300", url="https://cancer.jmir.org/2022/3/e38300", url="http://www.ncbi.nlm.nih.gov/pubmed/35867398" } @Article{info:doi/10.2196/39003, author="Leis, Angela and Casadevall, David and Albanell, Joan and Posso, Margarita and Maci{\`a}, Francesc and Castells, Xavier and Ram{\'i}rez-Anguita, Manuel Juan and Mart{\'i}nez Rold{\'a}n, Jordi and Furlong, I. Laura and Sanz, Ferran and Ronzano, Francesco and Mayer, A. Miguel", title="Exploring the Association of Cancer and Depression in Electronic Health Records: Combining Encoded Diagnosis and Mining Free-Text Clinical Notes", journal="JMIR Cancer", year="2022", month="Jul", day="11", volume="8", number="3", pages="e39003", keywords="cancer", keywords="depression", keywords="electronic health records", keywords="text mining", keywords="natural language processing", abstract="Background: A cancer diagnosis is a source of psychological and emotional stress, which are often maintained for sustained periods of time that may lead to depressive disorders. Depression is one of the most common psychological conditions in patients with cancer. According to the Global Cancer Observatory, breast and colorectal cancers are the most prevalent cancers in both sexes and across all age groups in Spain. Objective: This study aimed to compare the prevalence of depression in patients before and after the diagnosis of breast or colorectal cancer, as well as to assess the usefulness of the analysis of free-text clinical notes in 2 languages (Spanish or Catalan) for detecting depression in combination with encoded diagnoses. Methods: We carried out an analysis of the electronic health records from a general hospital by considering the different sources of clinical information related to depression in patients with breast and colorectal cancer. This analysis included ICD-9-CM (International Classification of Diseases, Ninth Revision, Clinical Modification) diagnosis codes and unstructured information extracted by mining free-text clinical notes via natural language processing tools based on Systematized Nomenclature of Medicine Clinical Terms that mentions symptoms and drugs used for the treatment of depression. Results: We observed that the percentage of patients diagnosed with depressive disorders significantly increased after cancer diagnosis in the 2 types of cancer considered---breast and colorectal cancers. We managed to identify a higher number of patients with depression by mining free-text clinical notes than the group selected exclusively on ICD-9-CM codes, increasing the number of patients diagnosed with depression by 34.8\% (441/1269). In addition, the number of patients with depression who received chemotherapy was higher than those who did not receive this treatment, with significant differences (P<.001). Conclusions: This study provides new clinical evidence of the depression-cancer comorbidity and supports the use of natural language processing for extracting and analyzing free-text clinical notes from electronic health records, contributing to the identification of additional clinical data that complements those provided by coded data to improve the management of these patients. ", doi="10.2196/39003", url="https://cancer.jmir.org/2022/3/e39003", url="http://www.ncbi.nlm.nih.gov/pubmed/35816382" } @Article{info:doi/10.2196/38722, author="Bylund, L. Carma and Wollney, N. Easton and Campbell-Salome, Gemme and Applebaum, J. Allison and Paige, R. Samantha and DeGruccio, Kennan and Weiss, Elisa and Sae-Hau, Maria and Arnold, Jason and Durante, Domenic and Amin, B. Tithi and Hampton, N. Chelsea and Fisher, L. Carla", title="Improving Clinical and Family Communication for Adult Child Caregivers of a Parent With a Blood Cancer: Single-Arm Pre-Post Pilot Intervention", journal="JMIR Cancer", year="2022", month="Jul", day="5", volume="8", number="3", pages="e38722", keywords="caregiver", keywords="clinician-patient communication", keywords="healthy communication practice", keywords="eHealth literacy", keywords="family communication", keywords="feasibility", keywords="acceptability", keywords="oncology", keywords="blood cancer", keywords="cancer patent", keywords="web-based information seeking", keywords="health information", keywords="clinical communication", keywords="smartphone", keywords="mobile phone", abstract="Background: Adult child caregivers of parents with cancer may face challenges when communicating with the patient and other family members, communicating during clinical interactions, and navigating web-based information seeking. Objective: We developed and pilot-tested the Healthy Communication Practice program for adult child caregivers of parents with a blood cancer, which aims to help participants learn and implement communication skills central to caregiving. We assessed the feasibility and acceptability of the training. Methods: Eligible participants completed a preprogram survey. We assessed the feasibility of participants completing the intervention in the allotted time. Participants had 2 weeks to complete the 2-part, 90-minute online program and completed a postprogram survey that included program evaluation items and the Acceptability of Intervention Measure (AIM) using a 1-5 rating scale (5=strongly agree). Results: Of 50 caregivers who initially expressed interest, 34 consented, and 30 completed the program and both surveys (88\% completion rate). Caregivers had a mean age of 45.07 (SD 11.96) years and provided care for parents who had a mean age of 73.31 (SD 9.38) years. Caregivers were primarily daughters (n=22, 73\%). Overall, scores on the AIM scale were high (mean 4.48, SD 0.67). Specifically, caregivers felt the content met their communication needs (mean 4.58, SD 0.62) and their own needs as a caregiver of a parent with a blood cancer (mean 4.39, SD 0.72). Conclusions: We demonstrated the feasibility and acceptability of the Healthy Communication Practice program, which aims to enhance family and clinical communication skills among caregivers of a parent with a blood cancer. Future studies will examine the efficacy of the program and its impact on both caregiver and patient communication and health outcomes. ", doi="10.2196/38722", url="https://cancer.jmir.org/2022/3/e38722", url="http://www.ncbi.nlm.nih.gov/pubmed/35788019" } @Article{info:doi/10.2196/36258, author="Katsaros, Dimos and Hawthorne, James and Patel, Jay and Pothier, Kaitlin and Aungst, Timothy and Franzese, Chris", title="Optimizing Social Support in Oncology with Digital Platforms", journal="JMIR Cancer", year="2022", month="Jun", day="24", volume="8", number="2", pages="e36258", keywords="social support", keywords="chronic disease", keywords="social networks", keywords="oncology", keywords="cancer", keywords="digital biomarkers", keywords="digital health", keywords="caregiver support", doi="10.2196/36258", url="https://cancer.jmir.org/2022/2/e36258", url="http://www.ncbi.nlm.nih.gov/pubmed/35749161" } @Article{info:doi/10.2196/35324, author="Tripathi, D. Sanidhya and Parker, D. Pearman and Prabhu, V. Arpan and Thomas, Kevin and Rodriguez, Analiz", title="An Examination of Patients and Caregivers on Reddit Navigating Brain Cancer: Content Analysis of the Brain Tumor Subreddit", journal="JMIR Cancer", year="2022", month="Jun", day="22", volume="8", number="2", pages="e35324", keywords="brain tumor", keywords="internet", keywords="social media", keywords="Reddit", keywords="cancer", keywords="emotional support", keywords="self-management", abstract="Background: Occurring in up to 40\% of all patients with cancer, the incidence of brain tumors has caused limited survival, a high psychosocial burden, and an increase in the loss of decision-making capability for the unique population. Although specific symptoms depend on the type of brain tumor, a clinical team of physicians, nurses, and other individuals commonly assist patients and their caregivers with how to tackle the upcoming challenges of their diagnosis. Despite the support from clinical team members, many patients and caregivers may still seek outside support through social media to process their emotions and seek comfort outside of the clinical setting. Specifically, online resources such as Reddit are used where users are provided with the anonymity they need to show their true behavior without fear of judgment. In this study, we aimed to examine trends from Reddit discussion threads on brain tumors to identify areas of need in patient care. Objective: Our primary aims were to determine the type of Reddit user posting, classify the specific brain tumors that were the subject of the posts, and examine the content of the original posts. Methods: We used a qualitative descriptive design to understand patients' and caregivers' unmet and met needs. We selected posts from the top-rated 100 posts from the r/braincancer subreddit from February 2017 to June 2020 to identify common themes using content analysis. Results: The qualitative content analysis revealed how Reddit users primarily used the forum as a method to understand and process the emotions surrounding a brain tumor diagnosis. Three major topic areas from content analysis emerged as prominent themes, including (1) harnessing hope, (2) moving through the grief process, and (3) expressing gratitude toward other Reddit users. Most of the authors of the posts were patients with brain tumors (32/88, 36\%) who used Reddit as a reflective journaling tool to process the associated emotions of a challenging diagnosis. Conclusions: This study shows the potential of Reddit to serve as a unique group therapy platform for patients affected by brain tumors. Our results highlight the support provided by the Reddit community members as a unique mechanism to assist cancer survivors and caregivers with the emotional processing of living with brain tumors. Additionally, the results highlight the importance of recommending Reddit as a therapeutic virtual community and the need for implementing online resources as a part of a health care professional's repertoire to understand the level of support they can give their patients. ", doi="10.2196/35324", url="https://cancer.jmir.org/2022/2/e35324", url="http://www.ncbi.nlm.nih.gov/pubmed/35731559" } @Article{info:doi/10.2196/33734, author="Petros, Gebrewold Nuhamin and Hadlaczky, Gergo and Carletto, Sara and Martinez, Gonzalez Sergio and Ostacoli, Luca and Ottaviano, Manuel and Meyer, Bj{\"o}rn and Scilingo, Pasquale Enzo and Carli, Vladimir", title="Sociodemographic Characteristics Associated With an eHealth System Designed to Reduce Depressive Symptoms Among Patients With Breast or Prostate Cancer: Prospective Study", journal="JMIR Form Res", year="2022", month="Jun", day="8", volume="6", number="6", pages="e33734", keywords="mental health", keywords="depression", keywords="eHealth", keywords="usability", keywords="breast cancer", keywords="prostate cancer", keywords="System Usability Scale", keywords="SUS", keywords="the user version of the Mobile App Rating Scale", keywords="uMARS", keywords="Neurobehavioural Predictive and Personalised Modelling of Depressive Symptoms During Primary Somatic Diseases", keywords="NEVERMIND system", abstract="Background: eHealth interventions have become a topic of interest in the field of mental health owing to their increased coordination and integration of different elements of care, in treating and preventing mental ill health in patients with somatic illnesses. However, poor usability, learnability, and user engagement might affect the effectiveness of an eHealth intervention. Identifying different sociodemographic characteristics that might be associated with higher perceived usability can help improve the usability of eHealth interventions. Objective: This study aimed to identify the sociodemographic characteristics that might be associated with the perceived usability of the NEVERMIND (Neurobehavioural Predictive and Personalised Modelling of Depressive Symptoms During Primary Somatic Diseases) eHealth system, comprising a mobile app and a sensorized shirt, in reducing comorbid depressive symptoms in patients with breast or prostate cancer. Methods: The study included a total of 129 patients diagnosed with breast (n=80, 62\%) or prostate (n=49, 38\%) cancer, who received a fully automated mobile app and sensorized shirt (NEVERMIND system). Sociodemographic data on age, sex, marital status, education level, and employment status were collected at baseline. Usability outcomes included the System Usability Scale (SUS), a subjective measure that covers different aspects of system usability; the user version of the Mobile App Rating Scale (uMARS), a user experience questionnaire; and a usage index, an indicator calculated from the number of days patients used the NEVERMIND system during the study period. Results: The analysis was based on 108 patients (n=68, 63\%, patients with breast cancer and n=40, 37\%, patients with prostate cancer) who used the NEVERMIND system for an average of 12 weeks and completed the study. The overall mean SUS score at 12 weeks was 73.4 (SD 12.5), which indicates that the NEVERMIND system has good usability, with no statistical differences among different sociodemographic characteristics. The global uMARS score was 3.8 (SD 0.3), and women rated the app higher than men ($\beta$=.16; P=.03, 95\% CI 0.02-0.3), after adjusting for other covariates. No other sociodemographic characteristics were associated with higher uMARS scores. There was a statistical difference in the use of the NEVERMIND system between women and men. Women had significantly lower use ($\beta$=--0.13; P=.04, 95\% CI ?0.25 to ?0.01), after adjusting for other covariates. Conclusions: The findings suggest that the NEVERMIND system has good usability according to the SUS and uMARS scores. There was a higher favorability of mobile apps among women than among men. However, men had significantly higher use of the NEVERMIND system. Despite the small sample size and low variability, there is an indication that the NEVERMIND system does not suffer from the digital divide, where certain sociodemographic characteristics are more associated with higher usability. Trial Registration: German Clinical Trials Register RKS00013391; https://www.drks.de/drks\_web/navigate.do?navigationId=trial.HTML\&TRIAL\_ID=DRKS00013391 ", doi="10.2196/33734", url="https://formative.jmir.org/2022/6/e33734", url="http://www.ncbi.nlm.nih.gov/pubmed/35675116" } @Article{info:doi/10.2196/33304, author="Benedict, Catherine and Dauber-Decker, L. Katherine and Ford, S. Jennifer and King, D'Arcy and Spiegel, David and Schapira, Lidia and Simon, Pamela and Diefenbach, Michael", title="Development of a Web-Based Decision Aid and Planning Tool for Family Building After Cancer (Roadmap to Parenthood): Usability Testing", journal="JMIR Cancer", year="2022", month="May", day="31", volume="8", number="2", pages="e33304", keywords="young adult cancer", keywords="cancer survivorship", keywords="decision-making", keywords="decision aids", keywords="fertility", keywords="reproductive health", keywords="mobile phone", abstract="Background: Owing to gonadotoxic cancer treatments, young adult female survivors often report uncertainty about their fertility, reproductive potential, and family-building options after treatment. Roadmap to Parenthood is a web-based decision aid and planning tool for family building after cancer. Objective: As part of a patient-centered development process, this study evaluated the usability of the decision aid website to inform design modifications and improve user experience. Methods: In total, 2 rounds of usability testing were conducted with the target population of young adult female cancer survivors. During the testing sessions, participants viewed the website twice; first, as a think-aloud exercise, and second, while a researcher interrupted at key points to obtain user feedback. Quantitative and qualitative data were collected to assess website usability. Quantitative measures included the System Usability Scale, WebQual, and eHealth Impact Questionnaire. An exit interview with open-ended questions gathered feedback on likes and dislikes and suggestions for improvement. Results: Participants (N=10) were young adult women, with average age of 30.9 (SD 4.51) years, and average time since treatment was 4.44 (SD 3.56) years. Website usability scores improved on the System Usability Scale from ``acceptable'' in round 1 to ``excellent'' in round 2 after making design changes based on user feedback (scores of 68 and 89.4, respectively). WebQual scores showed similar improvement from round 1 to round 2 of testing (mean 5.6 to 6.25; range 1-7). On the eHealth Impact Questionnaire, the information and presentation of the website was perceived as comprehensive, easy to understand, and trustworthy. Participants also reported improved confidence to discuss and manage fertility and family-building issues and felt encouraged to play a more active role in managing their fertility. In all, 3 usability themes were identified from the qualitative feedback: ease of use, visibility and navigation, and informational content and usefulness. Overall feedback was positive, and participants reported intentions to use the decision aid website in the future. In total, 10\% (1/10) of the participants reported negative emotions when learning about infertility risks and potential family-building challenges. Conclusions: Website usability improved after design changes were made in response to user feedback. Young adult female survivors reported positive views about the website and indicated that the decision aid would be useful in decision-making about family building after cancer. Future studies will include further design modifications to consider the emotional experiences of users and any additional navigational features or content to optimize the ease of use and support provided by the tool. ", doi="10.2196/33304", url="https://cancer.jmir.org/2022/2/e33304/", url="http://www.ncbi.nlm.nih.gov/pubmed/35639461" } @Article{info:doi/10.2196/33859, author="Kalra, Maitri and Henry, Elizabeth and McCann, Kelly and Karuturi, S. Meghan and Bustamante Alvarez, G. Jean and Parkes, Amanda and Wesolowski, Robert and Wei, Mei and Mougalian, S. Sarah and Durm, Gregory and Qin, Angel and Schonewolf, Caitlin and Trivedi, Meghna and Armaghani, J. Avan and Wilson, H. Frederick and Iams, T. Wade and Turk, A. Anita and Vikas, Praveen and Cecchini, Michael and Lubner, Sam and Pathak, Priyadarshini and Spencer, Kristen and Koshkin, S. Vadim and Labriola, K. Matthew and Marshall, H. Catherine and Beckermann, E. Katy and and Sharifi, N. Marina and Bejjani, C. Anthony and Hotchandani, Varsha and Housri, Samir and Housri, Nadine", title="Making National Cancer Institute--Designated Comprehensive Cancer Center Knowledge Accessible to Community Oncologists via an Online Tumor Board: Longitudinal Observational Study", journal="JMIR Cancer", year="2022", month="May", day="19", volume="8", number="2", pages="e33859", keywords="National Cancer Institute--designated Comprehensive Cancer Centers", keywords="NCI-CCC", keywords="tumor boards", keywords="TBs", keywords="knowledge sharing", keywords="cancer", keywords="digital health", keywords="oncology", keywords="health websites", keywords="health education", abstract="Background: Expert knowledge is often shared among multidisciplinary academic teams at tumor boards (TBs) across the country, but these conversations exist in silos and do not reach the wider oncology community. Objective: Using an oncologist-only question and answer (Q\&A) website, we sought to document expert insights from TBs at National Cancer Institute--designated Comprehensive Cancer Centers (NCI-CCCs) to provide educational benefits to the oncology community. Methods: We designed a process with the NCI-CCCs to document and share discussions from the TBs focused on areas of practice variation on theMednet, an interactive Q\&A website of over 13,000 US oncologists. The faculty translated the TB discussions into concise, non--case-based Q\&As on theMednet. Answers were peer reviewed and disseminated in email newsletters to registered oncologists. Reach and engagement were measured. Following each Q\&A, a survey question asked how the TB Q\&As impacted the readers' practice. Results: A total of 23 breast, thoracic, gastrointestinal, and genitourinary programs from 16 NCI-CCC sites participated. Between December 2016 and July 2021, the faculty highlighted 368 questions from their TBs. Q\&As were viewed 147,661 times by 7381 oncologists at 3515 institutions from all 50 states. A total of 277 (75\%) Q\&As were viewed every month. Of the 1063 responses to a survey question on how the Q\&A affected clinicians' practices, 646 (61\%) reported that it confirmed their current practice, 163 (20\%) indicated that a Q\&A would change their future practice, and 214 (15\%) reported learning something new. Conclusions: Through an online Q\&A platform, academics at the NCI-CCCs share knowledge outside the walls of academia with oncologists across the United States. Access to up-to-date expert knowledge can reassure clinicians' practices, significantly impact patient care in community practices, and be a source of new knowledge and education. ", doi="10.2196/33859", url="https://cancer.jmir.org/2022/2/e33859", url="http://www.ncbi.nlm.nih.gov/pubmed/35588361" } @Article{info:doi/10.2196/33262, author="DeGuzman, Baker Pamela and Vogel, L. David and Bernacchi, Veronica and Scudder, A. Margaret and Jameson, J. Mark", title="Self-reliance, Social Norms, and Self-stigma as Barriers to Psychosocial Help-Seeking Among Rural Cancer Survivors With Cancer-Related Distress: Qualitative Interview Study", journal="JMIR Form Res", year="2022", month="May", day="19", volume="6", number="5", pages="e33262", keywords="cancer survivorship", keywords="cancer-related distress", keywords="rural health", keywords="self-stigma", keywords="help-seeking", keywords="psychosocial referral", keywords="support networks", keywords="self-reliance", abstract="Background: Even when technology allows rural cancer survivors to connect with supportive care providers from a distance, uptake of psychosocial referrals is low. Fewer than one-third of participants in a telemedicine intervention for identifying rural survivors with high distress and connecting them with care accepted psychosocial referral. Objective: The purpose of this research was to examine the reasons for which rural cancer survivors did not accept a psychosocial referral. Methods: We utilized a qualitative design to address the research purpose. We interviewed participants who had been offered psychosocial referral. Semistructured interviews were conducted 6 weeks later (n=14), and structured interviews were conducted 9 months later (n=6). Data were analyzed descriptively using an inductive approach. Results: Ultimately, none of the rural cancer survivors (0/14, 0\%) engaged with a psychosocial care provider, including those who had originally accepted referrals (0/4, 0\%) for further psychosocial care. When explaining their decisions, survivors minimized their distress, emphasizing their self-reliance and the need to handle distress on their own. They expressed a preference for dealing with distress via informal support networks, which was often limited to close family members. No survivors endorsed public stigma as a barrier to accepting psychosocial help, but several suggested that self-stigma associated with not being able to handle their own distress was a reason for not seeking care. Conclusions: Rural cancer survivors' willingness to accept a psychosocial referral may be mediated by the rural cultural norm of self-reliance and by self-stigma. Interventions to address referral uptake may benefit from further illumination of these relationships as well as a strength-based approach that emphasizes positive aspects of the rural community and individual self-affirmation. ", doi="10.2196/33262", url="https://formative.jmir.org/2022/5/e33262", url="http://www.ncbi.nlm.nih.gov/pubmed/35588367" } @Article{info:doi/10.2196/36654, author="Mangsbacka, Maria and Gustavell, Tina", title="Nurses' Experiences Using an Interactive System to Assess and Manage Treatment-Related Symptoms of Patients With Pancreatic Cancer: Interview Study", journal="JMIR Nursing", year="2022", month="May", day="16", volume="5", number="1", pages="e36654", keywords="app", keywords="health care professionals", keywords="mobile health", keywords="mHealth", keywords="nurses", keywords="pancreatic cancer", keywords="person-centered care", keywords="symptom-management", keywords="qualitative interview", keywords="nursing", keywords="interview", abstract="Background: Treatment for pancreatic cancer entails symptom distress and a high burden of self-care. Patient-reported outcomes, collected with the support of mobile health (mHealth), have shown positive effects on symptom management, patient satisfaction, and quality of life for patients with cancer. For mHealth tools to become an integral part of clinical routine, experiences from health care professionals are needed. Objective: The aim of this paper is to describe nurses' experiences of integrating an interactive system (Interaktor) for symptom assessment and management into daily practice, when caring for patients following pancreaticoduodenectomy and during chemotherapy treatment due to pancreatic cancer. Methods: Patients reported symptoms via the Interaktor app daily for 6 months. In the event of alarming symptoms, an alert was triggered to the patient's nurse who then called the patient to offer advice and support. All nurses (n=8) who assessed patients were interviewed either individually or in a group. Transcribed interviews were analyzed using qualitative thematic analysis. Results: mHealth can facilitate person-centered care by offering nurses a way to gain knowledge about patients and to build relationships. Further, obstacles to implementation could be seen due to a lack of structural prerequisites and uncertainty about multiple ways to interact with patients. Conclusions: The Interaktor system can provide person-centered care. However, to implement mHealth tools as a clinical routine, focus needs to be placed on creating the necessary organizational conditions. ", doi="10.2196/36654", url="https://nursing.jmir.org/2022/1/e36654", url="http://www.ncbi.nlm.nih.gov/pubmed/35576577" } @Article{info:doi/10.2196/33110, author="Thaker, Khushboo and Chi, Yu and Birkhoff, Susan and He, Daqing and Donovan, Heidi and Rosenblum, Leah and Brusilovsky, Peter and Hui, Vivian and Lee, Ji Young", title="Exploring Resource-Sharing Behaviors for Finding Relevant Health Resources: Analysis of an Online Ovarian Cancer Community", journal="JMIR Cancer", year="2022", month="Apr", day="12", volume="8", number="2", pages="e33110", keywords="online health community", keywords="resource sharing", keywords="link sharing", keywords="topical relevance", keywords="information seeking", keywords="ovarian cancer", keywords="user behavior modeling", abstract="Background: Online health communities (OHCs) provide patients and survivors of ovarian cancer (OvCa) and their caregivers with help beyond traditional support channels, such as health care providers and clinicians. OvCa OHCs promote connections and exchanges of information among users with similar experiences. Users often exchange information, which leads to the sharing of resources in the form of web links. Although OHCs are important platforms for health management, concerns exist regarding the quality and relevance of shared resources. Previous studies have examined different aspects of resource-sharing behaviors, such as the purpose of sharing, the type of shared resources, and peer user reactions to shared resources in OHCs to evaluate resource exchange scenarios. However, there is a paucity of research examining whether resource-sharing behaviors can ultimately determine the relevance of shared resources. Objective: This study aimed to examine the association between OHC resource-sharing behaviors and the relevance of shared resources. We analyzed three aspects of resource-sharing behaviors: types of shared resources, purposes of sharing resources, and OHC users' reactions to shared resources. Methods: Using a retrospective design, data were extracted from the National Ovarian Cancer Coalition discussion forum. The relevance of a resource was classified into three levels: relevant, partially relevant, and not relevant. Resource-sharing behaviors were identified through manual content analysis. A significance test was performed to determine the association between resource relevance and resource-sharing behaviors. Results: Approximately 48.3\% (85/176) of the shared resources were identified as relevant, 29.5\% (52/176) as partially relevant, and 22.2\% (39/176) as irrelevant. The study established a significant association between the types of shared resources ($\chi$218=33.2; P<.001) and resource relevance (through chi-square tests of independence). Among the types of shared resources, health consumer materials such as health news (P<.001) and health organizations (P=.02) exhibited significantly more relevant resources. Patient educational materials (P<.001) and patient-generated resources (P=.01) were more significantly associated with partially relevant and irrelevant resources, respectively. Expert health materials, including academic literature, were only shared a few times but had significantly (P<.001) more relevant resources. A significant association ($\chi$210=22.9; P<.001) was also established between the purpose of resource sharing and overall resource relevance. Resources shared with the purpose of providing additional readings (P=.01) and pointing to resources (P=.03) had significantly more relevant resources, whereas subjects for discussion and staying connected did not include any relevant shared resources. Conclusions: The associations found between resource-sharing behaviors and the relevance of these resources can help in collecting relevant resources, along with the corresponding information needs from OvCa OHCs, on a large scale through automation. The results from this study can be leveraged to prioritize the resources required by survivors of OvCa and their caregivers, as well as to automate the search for relevant shared resources in OvCa OHCs. ", doi="10.2196/33110", url="https://cancer.jmir.org/2022/2/e33110", url="http://www.ncbi.nlm.nih.gov/pubmed/35258465" } @Article{info:doi/10.2196/33239, author="Micaux, Claire and Wiklander, Maria and Eriksson, E. Lars and Wettergren, Lena and Lampic, Claudia", title="Efficacy of a Web-Based Psychoeducational Intervention for Young Adults With Fertility-Related Distress Following Cancer (Fex-Can): Randomized Controlled Trial", journal="JMIR Cancer", year="2022", month="Mar", day="29", volume="8", number="1", pages="e33239", keywords="cancer", keywords="fertility distress", keywords="psychoeducation", keywords="randomized controlled trial", keywords="web-based", abstract="Background: Threatened fertility following cancer diagnosis in the reproductive age may severely impact emotional and psychosocial well-being in survivorship. Effective web-based interventions for fertility-related distress have been lacking. Objective: This study aims to test whether the Fertility and Sexuality following Cancer (Fex-Can) intervention is superior to standard care in reducing fertility-related distress and related psychosocial outcomes in young adults with cancer. Methods: This randomized controlled trial evaluated a 12-week, web-based, automated self-help intervention for fertility-related distress following cancer---Fex-Can Fertility. Individuals were identified via Swedish national quality registries, and those reporting fertility-related distress 1.5 years after diagnosis were invited. A total of 100 women and 24 men (aged 19-40 years) answered self-administered surveys at baseline (T0), directly after the intervention (T1), and 3 months later (T2). The main outcome was fertility-related distress, which was measured by using the 6-dimension Reproductive Concerns After Cancer (RCAC) scale. The secondary outcomes were health-related quality of life (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire), emotional distress (Hospital Anxiety and Depression Scale), fertility-related knowledge, and fertility self-efficacy. In addition, the intervention group (IG) reported self-perceived changes in problems related to fertility after cancer (T1). 2-tailed t tests and linear mixed models, including intention-to-treat and subgroup analyses, were performed to compare the effects of the intervention with those of standard care. Results: Although 62\% (31/50) of the participants in the IG stated that their concerns about fertility were fewer after the intervention, there were few statistically significant group differences in the main outcome (RCAC) at T1 and T2. Compared with controls, the IG rated lower distress concerning the dimension child's health at T2 (P=.003; effect size [ES]=0.64). This difference was maintained when adding group and time interactions (intention-to-treat: P=.003; ES=0.58). The IG also had better self-perceived cancer-related fertility knowledge at T1 (P=.05; ES=0.35) and T2 (P=.01; ES=0.42) than the control group. Subgroup analyses based on dose or adherence and baseline RCAC scores did not substantially alter these results. Overall, the use of the web-based program was low. Conclusions: The Fex-Can intervention had small to moderate positive effects on cancer-related fertility knowledge and distress related to child's health. The lack of group differences in other dimensions of fertility distress and related secondary outcomes contrasted with reports on self-perceived improvement after the intervention. The Fex-Can Fertility program may be a useful complement to routine psychosocial support in the clinical care of young women and men with cancer. Trial Registration: ISRCTN Registry 36621459; https://www.isrctn.com/ISRCTN36621459 ", doi="10.2196/33239", url="https://cancer.jmir.org/2022/1/e33239", url="http://www.ncbi.nlm.nih.gov/pubmed/35348459" } @Article{info:doi/10.2196/19379, author="van Eenbergen, C. Mies and Vromans, D. Ruben and Tick, W. Lidwine and Vreugdenhil, Gerard and Krahmer, J. Emiel and Mols, Floortje and van de Poll-Franse, V. Lonneke", title="Comparing Survivors of Cancer in Population-Based Samples With Those in Online Cancer Communities: Cross-sectional Questionnaire Study", journal="JMIR Cancer", year="2022", month="Mar", day="8", volume="8", number="1", pages="e19379", keywords="internet use", keywords="breast cancer", keywords="prostate cancer", keywords="lymphoma", keywords="gynecological cancer", keywords="cancer survivors", keywords="online health community", abstract="Background: Most Western countries have websites that provide information on cancer and the opportunity to participate in online cancer communities (OCCs). The number of patients with cancer that participate in these OCCs is growing. These patients are relatively easy to approach for research purposes. Objective: The objective of this study is to determine the differences and similarities between survivors of cancer in population-based samples and survivors participating in OCCs who use the internet in relation to their illness. Methods: In 2017, we drew a sample of 539 population-based patients and 531 OCC patients. The population-based patients were sent a paper-based questionnaire, and the OCC patients were sent the same questionnaire on the web. In the questionnaire, we asked patients about their sociodemographics, internet use, sources of information, media use, and wishes regarding future internet use for health care--related purposes, and the effect of internet use on their health care consumption. Results: The response rate of population-based internet users was 47\% (233/496), and that of the OCC group was 40.3\% (214/531). The OCC group had a significantly higher education level (P<.001), was younger (P<.001), had more survivors that were employed (P<.001), and attached greater importance to the internet (171/214, 79.9\% vs 126/233, 54.1\%; P<.001) and fellow survivors (107/214, 50\% vs 60/233, 25.8\%; P<.001). Compared with the population-based group, the OCC group reported more intensive internet use immediately after diagnosis, during treatment, and during follow-up (P<.001 in each case). There were similarities in terms of the relative importance that survivors attach to the various sources of information, the topics on which they seek information, and their wishes for future eHealth possibilities. The OCC group reported a greater need to participate in a web-based class or chat with others (92/214, 43\% vs 44/233, 18.9\%). Conclusions: We conclude that survivors who are members of an OCC are not representative of survivors of cancer in general. There are significant differences in sociodemographic characteristics, internet use during their treatment journey, internet search frequency during their cancer journey, and participation wishes. Using web-based information and communication can support shared decision-making and may facilitate the active participation of patients during their treatment. For research purposes, it is important to take the bias in OCC groups into account. ", doi="10.2196/19379", url="https://cancer.jmir.org/2022/1/e19379", url="http://www.ncbi.nlm.nih.gov/pubmed/35258460" } @Article{info:doi/10.2196/31395, author="Bu, Xiaofan and Ng, F. Peter H. and Xu, Wenjing and Cheng, Qinqin and Chen, Q. Peter and Cheng, K. Andy S. and Liu, Xiangyu", title="The Effectiveness of Virtual Reality--Based Interventions in Rehabilitation Management of Breast Cancer Survivors: Systematic Review and Meta-analysis", journal="JMIR Serious Games", year="2022", month="Feb", day="28", volume="10", number="1", pages="e31395", keywords="virtual reality", keywords="rehabilitation management", keywords="symptom", keywords="motor function", keywords="systematic review", keywords="meta-analysis", abstract="Background: Breast cancer survivors (BCSs) can present with various physical and psychological symptoms and functional deficits that impact their quality of life. Virtual reality (VR) technology is being used in breast cancer rehabilitation management to improve the emotional, cognitive, and physical well-being of BCSs. Objective: This systematic review aimed to examine the effectiveness of VR-based interventions on health-related outcomes in BCSs. A meta-analysis was conducted to evaluate the effectiveness of VR-based interventions in the rehabilitation management of BCSs. Methods: A systematic search was conducted on PubMed, Web of Science, EMBASE, CINAHL with Full Text, the Cochrane Central Register of Controlled Trials, CNKI, WanFang, VIP, and CBM, from inception to May 25, 2021. The inclusion criteria of the selected studies were as follows: (1) adults diagnosed with breast cancer; (2) any type of VR-based interventions (immersive and nonimmersive virtual environment); (3) comparison of traditional rehabilitation methods; (4) outcomes including pain, depression, anxiety, fatigue, cognitive function, shoulder range of motion (ROM), hand grip strength, lymphedema, cybersickness symptoms, fear of movement, bleeding, effusion, and flap necrosis, both during and after treatment; and (5) randomized controlled trials (RCTs), case-controlled trials, and quasi-experimental studies. The Cochrane Collaboration Tool was used to evaluate the risk of bias. Review Manager version 5.3 (Cochrane Collaboration) was used to conduct the meta-analysis. The mean difference (MD) and SDs with 95\% CIs were used to calculate continuous variables. Results: Twelve articles were included in this systematic review, of which 10 contributed information to the meta-analysis. A total of 604 participants were analyzed. The statistical analysis showed significant results for flexion (standard mean difference [SMD] 1.79; 95\% CI 0.55 to 3.03; P=.005), extension (SMD 1.54; 95\% CI 0.83 to 2.25; P<.001), abduction (MD 17.53; 95\% CI 14.33 to 20.72; P<.001), adduction (MD 15.98; 95\% CI 14.02 to 17.94; P<.001), internal rotation (MD 7.12; 95\% CI 5.54 to 8.70; P<.001), external rotation (SMD 0.96; 95\% CI 0.62 to 1.29; P<.001), anxiety (MD ?6.47; 95\% CI ?7.21 to ?5.73; P<.001), depression (MD ?4.27; 95\% CI ?4.64 to ?3.91; P<.001), pain (MD ?1.32; 95\% CI ?2.56 to ?0.09; P=.04), and cognitive function (MD 8.80; 95\% CI 8.24 to 9.36; P<.001). The meta-analysis indicated little to no difference in hand grip strength (MD 1.96; 95\% CI --0.93 to 4.85; P=.18). Conclusions: Findings of this review noted a weak but consistent positive association between VR-based interventions and outcomes. However, these results must be interpreted with caution due to the limited number of controlled trials analyzed, small sample sizes, and poor methodological quality. Well?designed, large, high?quality trials may have a significant impact on our confidence in the results. Future studies should identify specific aspects that improve the clinical impact of VR-based interventions on major outcomes in BCSs in the clinical setting. Trial Registration: PROSPERO International Prospective Register of Systematic Reviews CRD42021250727; https://tinyurl.com/2p89rmnk ", doi="10.2196/31395", url="https://games.jmir.org/2022/1/e31395", url="http://www.ncbi.nlm.nih.gov/pubmed/35225817" } @Article{info:doi/10.2196/31756, author="Umashankar, Saumya and Mamounas, Elise Matina and Matthys, Madeline and Hadeler, Kenji Edward and Wong, Claire Emily and Hicks, Greg and Hwang, Jimmy and Chien, Jo Amy and Rugo, S. Hope and Hamolsky, Deborah and Esserman, Laura and Melisko, Michelle", title="Evaluation of the Pathways for Survivors Program to Address Breast Cancer Survivorship--Associated Distress: Survey Study", journal="JMIR Cancer", year="2022", month="Feb", day="25", volume="8", number="1", pages="e31756", keywords="breast cancer", keywords="depression", keywords="anxiety", keywords="quality of life", keywords="breast cancer survivors", keywords="cancer survivorship", keywords="mental health", keywords="psychological health", abstract="Background: Patients with breast cancer frequently experience escalation of anxiety after completing curative treatment. Objective: This study evaluated the acceptability and psychological impact of a 1-day workshop to emphasize behavioral strategies involving intention and self-efficacy. Methods: Breast cancer survivors who attended a 1-day Pathways for Survivors workshop provided feedback and completed electronic quality of life (QOL) questionnaires at baseline, 1 and 6 weeks, and 6 months after the workshop. Attendees' baseline QOL scores were compared to follow-up (FUP) scores. Scores from patients receiving routine FUP care were also compiled as a reference population. Results: In total, 77 patients attended 1 of 9 workshops. The mean satisfaction score was 9.7 out of 10 for the workshop and 9.96 out of 10 for the moderator. Participants' baseline mean Patient-Reported Outcomes Measurement Information System (PROMIS) anxiety and depression scores were 57.8 (SD 6.9) and 55.3 (SD 7.5), respectively, which were significantly higher than those of patients receiving routine FUP care (49.1, SD 8.3 and 47.3 SD 8.0, respectively). PROMIS anxiety and depression scores decreased, and the Happiness Index Profile (HIP-10) score---measuring intention and resiliency---increased significantly at 1- and 6-week FUPs. Conclusions: The Pathways for Survivors program was favorably received. Anxiety and depression decreased significantly at 1- and 6-weeks after the workshop and remained below baseline at 6 months. Increased HIP-10 scores suggest that patients acquired and implemented skills from the workshop. A 1-day workshop led by a lay moderator significantly improved several psychological measures, suggesting that it may be a useful and time-efficient strategy to improve QOL in breast cancer survivors. We are investigating whether an abbreviated ``booster'' of the intervention at a later date could further improve and maintain QOL gains. ", doi="10.2196/31756", url="https://cancer.jmir.org/2022/1/e31756", url="http://www.ncbi.nlm.nih.gov/pubmed/35212641" } @Article{info:doi/10.2196/29579, author="Janssen, Anna and Fletcher, Jennifer and Keep, Melanie and Ahmadpour, Naseem and Rouf, Anika and Marthick, Michael and Booth, Rebecca", title="Experiences of Patients Undergoing Chemotherapy With Virtual Reality: Mixed Methods Feasibility Study", journal="JMIR Serious Games", year="2022", month="Feb", day="21", volume="10", number="1", pages="e29579", keywords="eHealth", keywords="digital health", keywords="virtual reality", keywords="cancer", keywords="chemotherapy", keywords="mixed methods research", keywords="virtual health", keywords="serious games", keywords="treatment", abstract="Background: Current research into virtual reality (VR) use during chemotherapy shows that it can be an effective distraction intervention. However, there is limited research in adult patients and to investigate how VR can be sustainably implemented in health care organizations. Objective: The aim of this study was to explore the feasibility and acceptability of using VR for adult patients undergoing chemotherapy, and to identify the factors that would enable the sustained use of VR during chemotherapy in health care organizations. Methods: Patients undergoing chemotherapy were recruited to participate in a VR intervention during chemotherapy infusion. Participants were observed during the session and completed a postintervention survey. Each participant was invited to participate in a semistructured interview about their experience. Results: A total of 18 patients participated in the study, 5 of whom participated in semistructured interviews. Findings indicated that the use of VR was acceptable for patients undergoing chemotherapy and the intervention was also feasible. Some participants felt that the VR was an effective distraction during chemotherapy infusion, although most still seemed to be aware of how long their treatment was taking. Although VR was acceptable and feasible to patients, interviews identified several barriers to sustained implementation, including access to a reliable app library and impact on staff workloads. Conclusions: VR was acceptable to patients with a diagnosis of cancer undergoing chemotherapy treatment. Patients found VR beneficial for breaking up the monotony of treatment, to provide an additional choice of activity in addition to other recreation, and in some instances as a distraction from the treatment itself. However, there are challenges to address if VR is to be implemented in practice for this patient group. ", doi="10.2196/29579", url="https://games.jmir.org/2022/1/e29579", url="http://www.ncbi.nlm.nih.gov/pubmed/35188474" } @Article{info:doi/10.2196/32291, author="Yeary, Kim Karen H. and Clark, Nikia and Saad-Harfouche, Frances and Erwin, Deborah and Kuliszewski, Gates Margaret and Li, Qiang and McCann, E. Susan and Yu, Han and Lincourt, Catherine and Zoellner, Jamie and Tang, Li", title="Cruciferous Vegetable Intervention to Reduce the Risk of Cancer Recurrence in Non--Muscle-Invasive Bladder Cancer Survivors: Development Using a Systematic Process", journal="JMIR Cancer", year="2022", month="Feb", day="15", volume="8", number="1", pages="e32291", keywords="non--muscle invasive bladder cancer survivors", keywords="dietary intervention", keywords="cruciferous vegetable", keywords="cancer survivorship", keywords="cancer recurrence", abstract="Background: Bladder cancer is one of the top 10 most common cancers in the United States. Most bladder cancers (70\%-80\%) are diagnosed at early stages as non--muscle-invasive bladder cancer (NMIBC), which can be removed surgically. However, 50\% to 80\% of NMIBC cases recur within 5 years, and 15\% to 30\% progress with poor survival. Current treatments are limited and expensive. A wealth of preclinical and epidemiological evidence suggests that dietary isothiocyanates in cruciferous vegetables (Cruciferae) could be a novel, noninvasive, and cost-effective strategy to control NMIBC recurrence and progression. Objective: The aim of this study is to develop a scalable dietary intervention that increases isothiocyanate exposure through Cruciferae intake in NMIBC survivors. Methods: We worked with a community advisory board (N=8) to identify relevant factors, evidence-based behavior change techniques, and behavioral theory constructs used to increase Cruciferae intake in NMIBC survivors; use the PEN-3 Model focused on incorporating cultural factors salient to the group's shared experiences to review the intervention components (eg, the saliency of behavioral messages); administer the revised intervention to community partners for their feedback; and refine the intervention. Results: We developed a multicomponent intervention for NMIBC survivors consisting of a magazine, tracking book, live telephone call script, and interactive voice messages. Entitled POW-R Health: Power to Redefine Your Health, the intervention incorporated findings from our adaptation process to ensure saliency to NMIBC survivors. Conclusions: This is the first evidence-based, theoretically grounded dietary intervention developed to reduce bladder cancer recurrence in NMIBC survivors using a systematic process for community adaptation. This study provides a model for others who aim to develop behavioral, community-relevant interventions for cancer prevention and control with the overall goal of wide-scale implementation and dissemination. ", doi="10.2196/32291", url="https://cancer.jmir.org/2022/1/e32291", url="http://www.ncbi.nlm.nih.gov/pubmed/35166681" } @Article{info:doi/10.2196/27642, author="Kaiser, Julia and Nagl, Michaela and Hoffmann, Rahel and Linde, Katja and Kersting, Anette", title="Therapist-Assisted Web-Based Intervention for Prolonged Grief Disorder After Cancer Bereavement: Randomized Controlled Trial", journal="JMIR Ment Health", year="2022", month="Feb", day="8", volume="9", number="2", pages="e27642", keywords="digital interventions", keywords="grief", keywords="traumatic loss", keywords="treatment effectiveness evaluation", keywords="cognitive behavioral therapy", keywords="neoplasms", abstract="Background: Bereavement due to cancer increases the risk of prolonged grief disorder. However, specialized treatment options for prolonged grief after a loss due to illness are still scarce. Objective: The aim of this study is to extend previous findings by evaluating a web-based cognitive behavioral intervention with asynchronous therapist support, consisting of structured writing tasks adapted specifically for prolonged grief after cancer bereavement. Methods: The intervention was evaluated in a purely web-based randomized waitlist-controlled trial. Open-access recruitment of participants was conducted on the web. Prolonged grief (Inventory of Complicated Grief), depression, anxiety, posttraumatic stress, posttraumatic growth, somatization, sleep quality, and mental and physical health were assessed on the web via validated self-report measures. Results: A total of 87 participants were randomized into the intervention group (IG; 44/87, 51\%) or the waitlist control group (43/87, 49\%). Of the participants, 7\% (6/87) dropped out of the study (5/44, 11\%, in the IG). Of the 39 completers in the IG, 37 (95\%) completed all intervention tasks. The intervention reduced symptoms of prolonged grief (intention-to-treat: P<.001; $\eta$2=0.34; Cohen d=0.80) to a clinically significant extent. It had favorable effects on depression, anxiety, posttraumatic stress, posttraumatic growth, and overall mental health but not on somatization, sleep quality, or physical health. Conclusions: The web-based intervention for prolonged grief after cancer bereavement is effective in reducing symptoms of prolonged grief disorder and accompanying syndromes in a timely, easily realizable manner and addresses specific challenges of bereavement to illness. Considering web-based approaches in future mental health care policy and practice can reduce health care gaps for those who are bereaved to cancer. Trial Registration: German\thinspaceClinical\thinspaceTrial\thinspaceRegister\thinspaceU1111--1186-6255;\thinspacehttps://www.drks.de/drks\_web/navigate.do?navigationId=trial.HTML\&TRIAL\_ID=DRKS00011001 ", doi="10.2196/27642", url="https://mental.jmir.org/2022/2/e27642", url="http://www.ncbi.nlm.nih.gov/pubmed/35133286" } @Article{info:doi/10.2196/34033, author="Mizrach, Helen and Goshe, Brett and Park, R. Elyse and Recklitis, Christopher and Greer, A. Joseph and Chang, Yuchiao and Frederick, Natasha and Abrams, Annah and Tower, D. Mary and Walsh, A. Emily and Huang, Mary and Kenney, Lisa and Homans, Alan and Miller, Karen and Denninger, John and Usmani, Naheed Ghazala and Peppercorn, Jeffrey and Perez, K. Giselle", title="Randomized Waitlist-Control Trial of a Web-Based Stress-Management and Resiliency Program for Adolescent and Young Adult Cancer Survivors: Protocol for the Bounce Back Study", journal="JMIR Res Protoc", year="2022", month="Jan", day="26", volume="11", number="1", pages="e34033", keywords="cancer survivorship", keywords="adolescent and young adult (AYA)", keywords="resiliency", keywords="stress management", keywords="coping", abstract="Background: The emotional health of adolescent and young adult (AYA) cancer survivors is compromised both during and after cancer treatment. Targeted programs designed to support AYAs' ability to cope with stress in the years following treatment completion are lacking. Mind-body programs may ameliorate the negative psychological and emotional effects of stress and assist AYAs with managing the psychosocial challenges of early survivorship. Objective: Our randomized waitlist-control trial aims to assess the feasibility, acceptability, and preliminary efficacy of a virtual group program (Bounce Back) to promote stress management and resiliency among posttreatment AYAs. Methods: Bounce Back is a stress management and resiliency program delivered via videoconference by a trained mental health clinician. Sessions were adapted from an evidence-based mind-body program (Stress Management and Resiliency Training - Relaxation Response Resiliency Program [SMART-3RP]) grounded in relaxation response elicitation, mindfulness, cognitive behavioral therapy, and positive psychology. Seventy-two AYAs (diagnosed with cancer between ages 14 years and 29 years and had completed cancer treatment within the last 5 years) were randomly assigned to the Bounce Back program or waitlist-control group and completed assessments at baseline, 3 months postbaseline, and 6 months postbaseline. The primary aim of the study is to determine the feasibility and acceptability of the Bounce Back program. Descriptive statistics, including means, frequencies, and ranges supplemented by qualitative exit interview feedback will be used to characterize the sample and to summarize feasibility and acceptability. The exploratory aims are to evaluate the preliminary effects of the program on stress coping and psychosocial outcome measures (ie, anxiety, depression) collected across the 3 time points. Results: This study was funded by the National Cancer Institute in July 2017. Study procedures were approved by the Dana-Farber Harvard Cancer Center Institutional Review Board in October 2018 (Protocol 18-428). The randomized trial was conducted from July 2019 to March 2021. Quantitative data collection is complete, and qualitative exit interview data collection is ongoing. Results are expected to be published in peer-reviewed journals and presented at local, national, or international meetings in the coming years. Conclusions: Few evidence-based programs exist that tackle the key transitional issues faced by AYA cancer survivors. Future analyses will help us determine the feasibility and acceptability of the Bounce Back program and its impact on AYA stress coping and psychological well-being. Trial Registration: ClinicalTrials.gov NCT03768336; https://clinicaltrials.gov/ct2/show/NCT03768336 International Registered Report Identifier (IRRID): DERR1-10.2196/34033 ", doi="10.2196/34033", url="https://www.researchprotocols.org/2022/1/e34033", url="http://www.ncbi.nlm.nih.gov/pubmed/35080500" } @Article{info:doi/10.2196/16447, author="Haggstrom, A. David and Carr, Thomas", title="Uses of Personal Health Records for Communication Among Colorectal Cancer Survivors, Caregivers, and Providers: Interview and Observational Study in a Human-Computer Interaction Laboratory", journal="JMIR Hum Factors", year="2022", month="Jan", day="25", volume="9", number="1", pages="e16447", keywords="personal health record", keywords="communication", keywords="cancer survivorship", keywords="colorectal cancer", abstract="Background: Personal health records (PHRs) may be useful for patient self-management and participation in communication with their caregivers and health care providers. As each potential participant's role is different, their perception of the best uses of a PHR may vary. Objective: The perspectives of patients, caregivers, and providers were all evaluated concurrently in relation to a PHR developed for colorectal cancer (CRC) survivors. Methods: We explored group perceptions of a CRC PHR prototype. Scenario-based testing across eight use cases, with semistructured follow-up interviews, was videotaped in a human-computer interaction laboratory with patients, caregivers, and health care providers. Providers included oncologists, gastroenterologists, and primary care physicians. Discrete observations underwent grounded theory visual affinity analysis to identify emergent themes. Results: Observations fell into three major themes: the network (who should be granted access to the PHR by the patient), functions (helpful activities the PHR enabled), and implementation (how to adopt the PHR into workflow). Patients wanted physician access to their PHR, as well as family member access, especially when they lived at a distance. All groups noted the added value of linking the PHR to an electronic health record, self-tracking, self-management, and secure messaging. Patients and caregivers also saw information in the PHR as a useful memory tool given their visits to multiple doctors. Providers had reservations about patients viewing raw data, which they were not prepared to interpret or might be inaccurate; patients and caregivers did not express any reservations about having access to more information. Patients saw PHR communication functions as a potential tool for relationship building. Patients and caregivers valued the journal as a tool for reflection and delivery of emotional support. Providers felt the PHR would facilitate patient-physician communication but worried that sharing journal access would make the doctor-patient relationship less professional and had reservations about the time burden of reviewing. Strategies suggested for efficient adoption into workflow included team delegation. Establishment of parameters for patient uses and provider responses was perceived as good standard practice. Conclusions: PHR perceptions differed by role, with providers seeing the PHR as informational, while patients and caregivers viewed the tool as more relational. Personal health records should be linked to electronic health records for ease of use. Tailoring access, content, and implementation of the PHR is essential. Technology changes have the potential to change the nature of the patient-physician relationship. Patients and providers should establish shared expectations about the optimal use of the PHR and explore how emerging patient-centered technologies can be successfully implemented in modern medical practice to improve the relational quality of care. ", doi="10.2196/16447", url="https://humanfactors.jmir.org/2022/1/e16447", url="http://www.ncbi.nlm.nih.gov/pubmed/35076406" } @Article{info:doi/10.2196/29485, author="Fu, Rosemary Mei and Axelrod, Deborah and Guth, A. Amber and Scagliola, Joan and Rampertaap, Kavita and El-Shammaa, Nardin and Qiu, M. Jeanna and McTernan, L. Melissa and Frye, Laura and Park, S. Christopher and Yu, Gary and Tilley, Charles and Wang, Yao", title="A Web- and Mobile-Based Intervention for Women Treated for Breast Cancer to Manage Chronic Pain and Symptoms Related to Lymphedema: Results of a Randomized Clinical Trial", journal="JMIR Cancer", year="2022", month="Jan", day="17", volume="8", number="1", pages="e29485", keywords="pain", keywords="lymphatic exercises", keywords="symptoms", keywords="lymphedema", keywords="breast cancer", keywords="health behavior", keywords="mHealth", abstract="Background: The-Optimal-Lymph-Flow (TOLF) is a patient-centered, web- and mobile-based mHealth system that delivers safe, easy, and feasible digital therapy of lymphatic exercises and limb mobility exercises. Objective: The purpose of this randomized clinical trial (RCT) was to evaluate the effectiveness of the web- and mobile-based TOLF system for managing chronic pain and symptoms related to lymphedema. The primary outcome includes pain reduction, and the secondary outcomes focus on symptom relief, limb volume difference measured by infrared perometer, BMI, and quality of life (QOL) related to pain. We hypothesized that participants in the intervention group would have improved pain and symptom experiences, limb volume difference, BMI, and QOL. Methods: A parallel RCT with a control--experimental, pre- and posttest, and repeated-measures design were used. A total of 120 patients were recruited face-to-face at the point of care during clinical visits. Patients were randomized according to pain in a 1:1 ratio into either the arm precaution (AP) control group to improve limb mobility and arm protection or The-Optimal-Lymph flow (TOLF) intervention group to promote lymph flow and limb mobility. Trial outcomes were evaluated at baseline and at week 12 after the intervention. Descriptive statistics, Fisher exact tests, Wilcoxon rank-sum tests, t test, and generalized linear mixed effects models were performed for data analysis. Results: At the study endpoint of 12 weeks, significantly fewer patients in the TOLF intervention group compared with the AP control group reported chronic pain (45\% [27/60] vs 70\% [42/60]; odds ratio [OR] 0.39, 95\% CI 0.17-0.90; P=.02). Patients who received the TOLF intervention were significantly more likely to achieve a complete reduction in pain (50\% [23/46] vs 22\% [11/51]; OR 3.56, 95\% CI 1.39-9.76; P=.005) and soreness (43\% [21/49] vs 22\% [11/51]; OR 2.60, 95\% CI 1.03-6.81; P=.03). Significantly lower median severity scores were found in the TOLF group for chronic pain (MedTOLF=0, IQR 0-1 vs MedAP=1, IQR 0-2; P=.02) and general bodily pain (MedTOLF=1, IQR=0-1.5 vs MedAP=1, IQR 1-3; P=.04). Compared with the AP control group, significantly fewer patients in the TOLF group reported arm/hand swelling (P=.04), heaviness (P=.03), redness (P=.03), and limited movement in shoulder (P=.02) and arm (P=.03). No significant differences between the TOLF and AP groups were found in complete reduction of aching (P=.12) and tenderness (P=.65), mean numbers of lymphedema symptom reported (P=.11), ?5\% limb volume differences (P=.48), and BMI (P=.12). Conclusions: The TOLF intervention had significant benefits for breast cancer survivors to manage chronic pain, soreness, general bodily pain, arm/hand swelling, heaviness, and impaired limb mobility. The intervention resulted in a 13\% reduction (from 40\% [24/60] to 27\% [16/60]) in proportions of patients who took pain medications compared with the AP control group, which had a 5\% increase (from 40\% [24/60] to 45\% [27/60]). A 12\% reduction (from 27\% [16/60] to 15\% [9/60]) in proportions of patients with ?5\% limb volume differences was found in the TOLF intervention, while a 5\% increase in the AP control group (from 40\% [24/60] to 45\% [27/60]) was found. In conclusion, the TOLF intervention can be a better choice for breast cancer survivors to reduce chronic pain and limb volume. Trial Registration: Clinicaltrials.gov NCT02462226; https://clinicaltrials.gov/ct2/show/NCT02462226 International Registered Report Identifier (IRRID): RR2-10.2196/resprot.5104 ", doi="10.2196/29485", url="https://cancer.jmir.org/2022/1/e29485", url="http://www.ncbi.nlm.nih.gov/pubmed/35037883" } @Article{info:doi/10.2196/32458, author="Huberty, Jennifer and Bhuiyan, Nishat and Neher, Taylor and Joeman, Lynda and Mesa, Ruben and Larkey, Linda", title="Leveraging a Consumer-Based Product to Develop a Cancer-Specific Mobile Meditation App: Prototype Development Study", journal="JMIR Form Res", year="2022", month="Jan", day="14", volume="6", number="1", pages="e32458", keywords="cancer patients/survivors", keywords="meditation", keywords="mHealth", keywords="app development", keywords="qualitative research", abstract="Background: Mobile meditation apps may offer a long-term, accessible, and effective solution for ongoing symptom management in cancer patients/survivors. However, there are currently no commercial cancer-specific meditation apps that reflect cancer specialist expertise, input from cancer patients/survivors, and features and content specific to cancer patients'/survivors' needs. Objective: The aim of this study was to gain insight (via surveys, daily journals, and focus groups) from cancer patients/survivors, health care providers, and current subscribers of Calm (a consumer-based mobile meditation app) who were patients/survivors to develop a prototype of a mobile meditation app specifically designed for cancer patients/survivors. Methods: Participants were recruited via prior partnerships, word-of-mouth referrals, and recruitment posts on Facebook and Instagram. Cancer patients/survivors and health care providers were instructed to download and use the Calm app for at least 10 minutes a day for 7 days, complete an online daily journal for 7 days, and participate in a virtual focus group (one for cancer patients/survivors and one for providers). Current Calm subscribers who were cancer patients/survivors completed an online survey about different aspects of the Calm app and participated in a third virtual focus group. Data were qualitatively analyzed using a combination of deductive and inductive coding. Results: A total of 27 participants (11 cancer patients/survivors, 10 health care providers, 6 current Calm subscribers) completed the study. Similar themes and subthemes were found across surveys, daily journals, and focus groups, and fell into two major categories, content and functionality, with cancer-specific and noncancer-specific themes identified within each category. The majority of content preferences and suggestions that arose were cancer-specific, such as content related to negative emotions or feelings (eg, anxiety, grief, trauma/posttraumatic stress disorder, fear of recurrence, isolation), positive feelings and finding meaning (eg, gratitude, storytelling, acceptance), scenarios and experiences (eg, waiting, treatment-specific mediations), type and stage of cancer journey, and movement modifications. Some of the noncancer-specific themes under app content included sleep, music, and visualizations. In terms of app functionality, the majority of participants expressed interest in having a section/tab/area of the app that was specifically geared toward cancer patients/survivors. Preferences and suggestions for cancer-specific functionality features included options based on symptoms or journey, being able to communicate with other patients or survivors to share suggestions for specific meditations, and having an emergency toolkit for patients/survivors. Conclusions: Findings from cancer patients/survivors, health care providers, and current Calm subscribers who were patients/survivors to be incorporated into the development of the prototype fell into two major categories: (1) content of the app and (2) functionality of the app. The prototype's form and function will be pilot-tested among 30 cancer patients/survivors in a 4-week study, and the resulting feasibility data will be used to inform the final app design and an efficacy study. ", doi="10.2196/32458", url="https://formative.jmir.org/2022/1/e32458", url="http://www.ncbi.nlm.nih.gov/pubmed/35029528" } @Article{info:doi/10.2196/25792, author="Wilczynski, Oph{\'e}lie and Boisbouvier, Anthony and Radoszycki, Lise and Cott{\'e}, Fran{\c{c}}ois-Emery and Gaudin, Anne-Fran{\c{c}}oise and Lemasson, Herv{\'e}", title="Integrating Quality of Life in the Care Pathway of Cancer Patients Undergoing Immunotherapy Treatment: Descriptive, Cross-sectional Survey of an Online Patient Community's Experiences and Expectations", journal="J Med Internet Res", year="2022", month="Jan", day="11", volume="24", number="1", pages="e25792", keywords="cancer", keywords="quality of life", keywords="immunotherapy", keywords="patient community", keywords="patient satisfaction", abstract="Background: New cancer treatments, such as immune checkpoint inhibitors (ICIs), can improve survival and health-related quality of life (HRQoL) in patients with cancer. Although long-term monitoring of HRQoL has been shown to improve survival, integration of HRQoL into everyday practice remains poorly documented. Objective: This study describes experiences and expectations of patients treated with ICIs regarding a discussion of HRQoL with health care professionals (HCPs) in cancer management. Methods: This cross-sectional study was conducted in an online patient community (Carenity) in France. Patients treated with ICIs for cancer, included between September 2018 and January 2019, completed a questionnaire to assess the involvement of HCP in a discussion of HRQoL and when and what was discussed. Results: Of 82 patients included (mean age: 56.9 years, 95\% CI 54.2-59.6; 46 [56\%] male; 34 [41\%] with lung cancer), 62 (76\%) reported discussing HRQoL at least once with HCPs, mainly general practitioners (54/82, 66\%), oncologists (53/82, 65\%), and hospital nurses (50/82, 61\%). Around half (45/82, 55\%) of the patients were satisfied with these discussions. Discussions with the oncologist were at the patient's initiative (34/53, 64\%). Discussions occurred primarily during follow-up visits (40/62, 65\%), when adverse events occurred (30/62, 48\%), and at treatment initiation (27/62, 32\%). The most discussed dimensions were symptoms (48/62, 77\%) and physical well-being (43/62, 69\%). With respect to expectations, 54/82 (66\%) patients considered oncologists as the most important HCPs for discussing HRQoL. These discussions were desirable throughout the care pathway, particularly at diagnosis (63/82, 77\%) and when treatment was initiated (75/82, 92\%) or changed (68/82, 83\%). All HRQoL dimensions were considered important to discuss. Conclusions: With only around half of the patients satisfied with HRQoL discussions, impactful HRQoL integration in clinical practice is critical. According to patients, this integration should involve mainly oncologists and general practitioners, should happen at every step of the care pathway, and should be extended to dimensions that are currently rarely addressed. ", doi="10.2196/25792", url="https://www.jmir.org/2022/1/e25792", url="http://www.ncbi.nlm.nih.gov/pubmed/35014969" } @Article{info:doi/10.2196/29745, author="Cincidda, Clizia and Pizzoli, Maria Silvia Francesca and Pravettoni, Gabriella", title="Remote Psychological Interventions for Fear of Cancer Recurrence: Scoping Review", journal="JMIR Cancer", year="2022", month="Jan", day="11", volume="8", number="1", pages="e29745", keywords="fear of cancer recurrence", keywords="cognitive behavioral therapy", keywords="acceptance and commitment therapy", keywords="mindfulness", keywords="eHealth", keywords="blended intervention", abstract="Background: Patients with cancer and survivors may experience the fear of cancer recurrence (FCR), a preoccupation with the progression or recurrence of cancer. During the spread of COVID-19 in 2019, patients and survivors experienced increased levels of FCR. Hence, there is a greater need to identify effective evidence-based treatments to help people cope with FCR. Remotely delivered interventions might provide a valuable means to address FCR in patients with cancer. Objective: The aim of this study is to first discuss the available psychological interventions for FCR based on traditional cognitive behavioral therapies (CBTs) or contemporary CBTs, in particular, mindfulness and acceptance and commitment therapy, and then propose a possible approach based on the retrieved literature. Methods: We searched key electronic databases to identify studies that evaluated the effect of psychological interventions such as CBT on FCR among patients with cancer and survivors. Results: Current evidence suggests that face-to-face psychological interventions for FCR are feasible, acceptable, and efficacious for managing FCR. However, there are no specific data on the interventions that are most effective when delivered remotely. Conclusions: CBT interventions can be efficacious in managing FCR, especially at posttreatment, regardless of whether it is delivered face to face, on the web, or using a blended approach. To date, no study has simultaneously compared the effectiveness of face-to-face, web-based, and blended interventions. On the basis of the retrieved evidence, we propose the hypothetical program of an intervention for FCR based on both traditional CBT and contemporary CBT, named Change Of Recurrence, which aims to improve the management of FCR in patients with cancer and survivors. ", doi="10.2196/29745", url="https://cancer.jmir.org/2022/1/e29745", url="http://www.ncbi.nlm.nih.gov/pubmed/35014956" } @Article{info:doi/10.2196/34502, author="Jones, R. Sarah and Vidrine, J. Damon and Wetter, W. David and Shih, Tina Ya-Chen and Sutton, K. Steven and Ramondetta, M. Lois and Elting, S. Linda and Walker, L. Joan and Smith, M. Katie and Frank-Pearce, G. Summer and Li, Yisheng and Simmons, N. Vani and Vidrine, I. Jennifer", title="Evaluation of the Efficacy of a Smoking Cessation Intervention for Cervical Cancer Survivors and Women With High-Grade Cervical Dysplasia: Protocol for a Randomized Controlled Trial", journal="JMIR Res Protoc", year="2021", month="Dec", day="30", volume="10", number="12", pages="e34502", keywords="smoking cessation", keywords="cervical cancer", keywords="cancer survivor", keywords="motivation", keywords="tobacco treatment", keywords="cancer", keywords="smoking", keywords="RCT", keywords="randomized controlled trial", keywords="cognitive behavior", keywords="intervention", abstract="Background: The prevalence of smoking among cervical cancer survivors is strikingly high, yet no smoking cessation interventions to date have specifically targeted this population. This paper describes the study design, methods, and data analysis plans for a randomized clinical trial designed to evaluate the efficacy of a theoretically and empirically based Motivation And Problem Solving (MAPS) approach for promoting and facilitating smoking cessation among cervical cancer survivors. MAPS is a comprehensive, dynamic, and holistic intervention that incorporates empirically supported cognitive behavioral and social cognitive theory--based treatment strategies within an overarching motivational framework. MAPS is designed to be appropriate for all smokers regardless of their motivation to change and views motivation as dynamically fluctuating from moment to moment throughout the behavior change process. Objective: This 2-group randomized controlled trial compares the efficacy of standard treatment to MAPS in facilitating smoking cessation among women with a history of high-grade cervical dysplasia or cervical cancer. Methods: Participants (N=202) are current smokers with a history of high-grade cervical dysplasia or cervical cancer recruited nationally and randomly assigned to one of two treatment conditions: (1) standard treatment (ST) or (2) MAPS. ST consists of repeated letters referring participants to their state's tobacco cessation quitline, standard self-help materials, and free nicotine replacement therapy when ready to quit. MAPS has all ST components along with 6 proactive telephone counseling sessions delivered over 12 months. The primary outcome is abstinence from tobacco at 18 months. Secondary outcomes include abstinence over time across all assessment points, abstinence at other individual assessment time points, quit attempts, cigarettes per day, and use of state quitlines. Hypothesized treatment mechanisms and cost-effectiveness will also be evaluated. Results: This study was approved by the institutional review boards at the University of Texas MD Anderson Cancer Center, the University of Oklahoma Health Sciences Center, and Moffitt Cancer Center. Participant enrollment concluded at Moffitt Cancer Center in January 2020, and follow-up data collection was completed in July 2021. Data analysis is ongoing. Conclusions: This study will yield crucial information regarding the efficacy and cost-effectiveness of a MAPS approach for smoking cessation tailored to the specific needs of women with a history of high-grade cervical dysplasia or cervical cancer. Findings indicating that MAPS has substantially greater efficacy than existing evidence-based tobacco cessation treatments would have tremendous public health significance. Trial Registration: ClinicalTrials.gov NCT02157610; https://clinicaltrials.gov/ct2/show/NCT02157610 International Registered Report Identifier (IRRID): DERR1-10.2196/34502 ", doi="10.2196/34502", url="https://www.researchprotocols.org/2021/12/e34502", url="http://www.ncbi.nlm.nih.gov/pubmed/34967755" } @Article{info:doi/10.2196/19183, author="Lei, Yuqi and Xu, Songhua and Zhou, Linyun", title="User Behaviors and User-Generated Content in Chinese Online Health Communities: Comparative Study", journal="J Med Internet Res", year="2021", month="Dec", day="15", volume="23", number="12", pages="e19183", keywords="online health community", keywords="user behaviors", keywords="user-generated content", keywords="social network analysis", keywords="weighted knowledge network", abstract="Background: Online health communities (OHCs) have increasingly gained traction with patients, caregivers, and supporters globally. Chinese OHCs are no exception. However, user-generated content (UGC) and the associated user behaviors in Chinese OHCs are largely underexplored and rarely analyzed systematically, forfeiting valuable opportunities for optimizing treatment design and care delivery with insights gained from OHCs. Objective: This study aimed to reveal both the shared and distinct characteristics of 2 popular OHCs in China by systematically and comprehensively analyzing their UGC and the associated user behaviors. Methods: We concentrated on studying the lung cancer forum (LCF) and breast cancer forum (BCF) on Mijian, and the diabetes consultation forum (DCF) on Sweet Home, because of the importance of the 3 diseases among Chinese patients and their prevalence on Chinese OHCs in general. Our analysis explored the key user activities, small-world effect, and scale-free characteristics of each social network. We examined the UGC of these forums comprehensively and adopted the weighted knowledge network technique to discover salient topics and latent relations among these topics on each forum. Finally, we discussed the public health implications of our analysis findings. Results: Our analysis showed that the number of reads per thread on each forum followed gamma distribution (HL=0, HB=0, and HD=0); the number of replies on each forum followed exponential distribution (adjusted RL2=0.946, adjusted RB2=0.958, and adjusted RD2=0.971); and the number of threads a user is involved with (adjusted RL2=0.978, adjusted RB2=0.964, and adjusted RD2=0.970), the number of followers of a user (adjusted RL2=0.989, adjusted RB2=0.962, and adjusted RD2=0.990), and a user's degrees (adjusted RL2=0.997, adjusted RB2=0.994, and adjusted RD2=0.968) all followed power-law distribution. The study further revealed that users are generally more active during weekdays, as commonly witnessed in all 3 forums. In particular, the LCF and DCF exhibited high temporal similarity ($\rho$=0.927; P<.001) in terms of the relative thread posting frequencies during each hour of the day. Besides, the study showed that all 3 forums exhibited the small-world effect (mean $\sigma$L=517.15, mean $\sigma$B=275.23, and mean $\sigma$D=525.18) and scale-free characteristics, while the global clustering coefficients were lower than those of counterpart international OHCs. The study also discovered several hot topics commonly shared among the 3 disease forums, such as disease treatment, disease examination, and diagnosis. In particular, the study found that after the outbreak of COVID-19, users on the LCF and BCF were much more likely to bring up COVID-19--related issues while discussing their medical issues. Conclusions: UGC and related online user behaviors in Chinese OHCs can be leveraged as important sources of information to gain insights regarding individual and population health conditions. Effective and timely mining and utilization of such content can continuously provide valuable firsthand clues for enhancing the situational awareness of health providers and policymakers. ", doi="10.2196/19183", url="https://www.jmir.org/2021/12/e19183", url="http://www.ncbi.nlm.nih.gov/pubmed/34914615" } @Article{info:doi/10.2196/27497, author="Kalf, J. Rachel R. and Delnoij, J. Diana M. and Ryll, Bettina and Bouvy, L. Marcel and Goettsch, G. Wim", title="Information Patients With Melanoma Spontaneously Report About Health-Related Quality of Life on Web-Based Forums: Case Study", journal="J Med Internet Res", year="2021", month="Dec", day="7", volume="23", number="12", pages="e27497", keywords="reimbursement decision-making", keywords="QoL", keywords="health care", keywords="quality of life", abstract="Background: There is a general agreement on the importance of health-related quality of life (HRQoL). This type of information is becoming increasingly important for the value assessment of health technology assessment agencies in evaluating the benefits of new health technologies, including medicines. However, HRQoL data are often limited, and additional sources that provide this type of information may be helpful. Objective: We aim to identify the HRQoL topics important to patients with melanoma based on web-based discussions on public social media forums. Methods: We identified 3 public web-based forums from the United States and the United Kingdom, namely the Melanoma Patient Information Page, the Melanoma International Forum, and MacMillan. Their posts were randomly selected and coded using qualitative methods until saturation was reached. Results: Of the posts assessed, 36.7\% (150/409) of posts on Melanoma International Forum, 45.1\% (198/439) on MacMillan, and 35.4\% (128/362) on Melanoma Patient Information Page focused on HRQoL. The 2 themes most frequently mentioned were mental health and (un)certainty. The themes were constructed based on underlying and more detailed codes. Codes related to fear, worry and anxiety, uncertainty, and unfavorable effects were the most-often discussed ones. Conclusions: Web-based forums are a valuable source for identifying relevant HRQoL aspects in patients with a given disease. These aspects could be cross-referenced with existing tools and they might improve the content validity of patient-reported outcome measures, including HRQoL questionnaires. In addition, web-based forums may provide health technology assessment agencies with a more holistic understanding of the external aspects affecting patient HRQoL. These aspects might support the value assessment of new health technologies and could therefore help inform topic prioritization as well as the scoping phase before any value assessment. ", doi="10.2196/27497", url="https://www.jmir.org/2021/12/e27497", url="http://www.ncbi.nlm.nih.gov/pubmed/34878994" } @Article{info:doi/10.2196/30439, author="Smrke, Ur{\vs}ka and Mlakar, Izidor and Lin, Simon and Musil, Bojan and Plohl, Nejc", title="Language, Speech, and Facial Expression Features for Artificial Intelligence--Based Detection of Cancer Survivors' Depression: Scoping Meta-Review", journal="JMIR Ment Health", year="2021", month="Dec", day="6", volume="8", number="12", pages="e30439", keywords="artificial intelligence", keywords="cancer", keywords="depression", keywords="facial expression", keywords="language", keywords="oncology", keywords="review", keywords="screening", keywords="speech", keywords="symptom", abstract="Background: Cancer survivors often experience disorders from the depressive spectrum that remain largely unrecognized and overlooked. Even though screening for depression is recognized as essential, several barriers prevent its successful implementation. It is possible that better screening options can be developed. New possibilities have been opening up with advances in artificial intelligence and increasing knowledge on the connection of observable cues and psychological states. Objective: The aim of this scoping meta-review was to identify observable features of depression that can be intercepted using artificial intelligence in order to provide a stepping stone toward better recognition of depression among cancer survivors. Methods: We followed a methodological framework for scoping reviews. We searched SCOPUS and Web of Science for relevant papers on the topic, and data were extracted from the papers that met inclusion criteria. We used thematic analysis within 3 predefined categories of depression cues (ie, language, speech, and facial expression cues) to analyze the papers. Results: The search yielded 1023 papers, of which 9 met the inclusion criteria. Analysis of their findings resulted in several well-supported cues of depression in language, speech, and facial expression domains, which provides a comprehensive list of observable features that are potentially suited to be intercepted by artificial intelligence for early detection of depression. Conclusions: This review provides a synthesis of behavioral features of depression while translating this knowledge into the context of artificial intelligence--supported screening for depression in cancer survivors. ", doi="10.2196/30439", url="https://mental.jmir.org/2021/12/e30439", url="http://www.ncbi.nlm.nih.gov/pubmed/34874883" } @Article{info:doi/10.2196/27639, author="Luo, Yuanhui and Xia, Wei and Cheung, Tan Ankie and Ho, Kwan Laurie Long and Zhang, Jingping and Xie, Jianhui and Xiao, Pin and Li, William Ho Cheung", title="Effectiveness of a Mobile Device--Based Resilience Training Program in Reducing Depressive Symptoms and Enhancing Resilience and Quality of Life in Parents of Children With Cancer: Randomized Controlled Trial", journal="J Med Internet Res", year="2021", month="Nov", day="29", volume="23", number="11", pages="e27639", keywords="depressive symptoms", keywords="pediatric cancer", keywords="parents", keywords="quality of life", keywords="resilience", keywords="mobile phone", abstract="Background: Caring for children with cancer can be a stressful experience for parents and may have negative effects on their physical and psychological well-being. Although evidence has shown that resilience is associated with positive psychological well-being, few interventions have been specifically designed to enhance the resilience of parents of children with cancer. Objective: The aim of this study is to examine the effectiveness of a mobile device--based resilience training program in reducing depressive symptoms and enhancing resilience and quality of life (QoL) in parents of children with cancer. Methods: Parents of children diagnosed with cancer were recruited from the pediatric oncology wards of 3 tertiary hospitals in China. The participants were randomly assigned to either the experimental group (52/103, 50.5\%) to undergo an 8-week mobile device--based resilience training program or to the control group (51/103, 49.5\%) to receive an 8-week program of placebo information. The study outcomes included resilience, depressive symptoms, and QoL, as measured by the Connor--Davidson Resilience Scale, the Self-Rating Depression Scale, and the Short Form of the 6-Dimension Health Survey, respectively. All data were collected at baseline and at 2 and 6 months of follow-up. The data analysis followed the intention-to-treat principle. A generalized estimating equation was used to examine the effects of the intervention. Results: The participants were mostly female (72/103, 69.9\%), and their mean age was 33.6 (SD 5.2) years. The participants in the experimental group showed significantly higher levels of resilience (mean 67.96, SD 15.8 vs mean 58.27, SD 19.0; P<.001) and lower levels of depressive symptoms (mean 40.17, SD 9.9 vs mean 46.04, SD 10.9; P<.001) than those in the control group at 6 months of follow-up. The intervention showed statistically significant effects in improving resilience ($\beta$=6.082; P=.01) and decreasing depressive symptoms ($\beta$=?2.772; P=.04) relative to the control group. The QoL score in the experimental group was higher than that in the control group at 6 months of follow-up (mean 0.79, SD 0.2 vs mean 0.76, SD 0.3; P=.07); however, no statistically significant intervention effect was detected ($\beta$=.020; P=.38). Conclusions: The mobile device--based resilience training program effectively enhanced resilience and alleviated depressive symptoms in parents of children with cancer. It is highly recommended that health care professionals incorporate this resilience training program when providing psychological care to parents of children with cancer. Trial Registration: Clinical.Trials.gov NCT04038242; http://clinicaltrials.gov/ct2/show/NCT04038242 ", doi="10.2196/27639", url="https://www.jmir.org/2021/11/e27639", url="http://www.ncbi.nlm.nih.gov/pubmed/34847060" } @Article{info:doi/10.2196/27850, author="Xu, Lu and Sanders, Leslie and Li, Kay and Chow, L. James C.", title="Chatbot for Health Care and Oncology Applications Using Artificial Intelligence and Machine Learning: Systematic Review", journal="JMIR Cancer", year="2021", month="Nov", day="29", volume="7", number="4", pages="e27850", keywords="chatbot", keywords="artificial intelligence", keywords="machine learning", keywords="health", keywords="medicine", keywords="communication", keywords="diagnosis", keywords="cancer therapy", keywords="ethics", keywords="medical biophysics", keywords="mobile phone", abstract="Background: Chatbot is a timely topic applied in various fields, including medicine and health care, for human-like knowledge transfer and communication. Machine learning, a subset of artificial intelligence, has been proven particularly applicable in health care, with the ability for complex dialog management and conversational flexibility. Objective: This review article aims to report on the recent advances and current trends in chatbot technology in medicine. A brief historical overview, along with the developmental progress and design characteristics, is first introduced. The focus will be on cancer therapy, with in-depth discussions and examples of diagnosis, treatment, monitoring, patient support, workflow efficiency, and health promotion. In addition, this paper will explore the limitations and areas of concern, highlighting ethical, moral, security, technical, and regulatory standards and evaluation issues to explain the hesitancy in implementation. Methods: A search of the literature published in the past 20 years was conducted using the IEEE Xplore, PubMed, Web of Science, Scopus, and OVID databases. The screening of chatbots was guided by the open-access Botlist directory for health care components and further divided according to the following criteria: diagnosis, treatment, monitoring, support, workflow, and health promotion. Results: Even after addressing these issues and establishing the safety or efficacy of chatbots, human elements in health care will not be replaceable. Therefore, chatbots have the potential to be integrated into clinical practice by working alongside health practitioners to reduce costs, refine workflow efficiencies, and improve patient outcomes. Other applications in pandemic support, global health, and education are yet to be fully explored. Conclusions: Further research and interdisciplinary collaboration could advance this technology to dramatically improve the quality of care for patients, rebalance the workload for clinicians, and revolutionize the practice of medicine. ", doi="10.2196/27850", url="https://cancer.jmir.org/2021/4/e27850", url="http://www.ncbi.nlm.nih.gov/pubmed/34847056" } @Article{info:doi/10.2196/31966, author="Lo, Jonathon and Ballurkar, Kieran and Fox, Simonie and Tynan, Kate and Luu, Nghiep and Boyer, Michael and Murali-Ganesh, Raghav", title="A Digital Coaching Intervention for Cancer Survivors With Job Loss: Retrospective Study", journal="JMIR Cancer", year="2021", month="Nov", day="23", volume="7", number="4", pages="e31966", keywords="cancer survivors", keywords="employment", keywords="absenteeism", keywords="mobile app", keywords="software", keywords="return to work", abstract="Background: Returning to work is a key unmet need for working-age cancer survivors. Objective: This study sought to evaluate return-to-work outcomes of a multidisciplinary intervention provided as routine employee support. Methods: In a retrospective cohort analysis, patients with cancer and more than 3 months of absence from work were provided with an intervention consisting of digital resources and calls with a health coach. Propensity score matching was used to define a similar cohort of cancer patients absent from work, who were not offered the coaching intervention. The return-to-work rate as a percentage of all participants and secondary outcomes, such as the rate of death, were measured. The median time to return to work was compared between the cohorts using the Kaplan-Meier method. Results: A total of 220 participants were enrolled in the intervention, of which 125 met the criteria for analysis. The median follow-up from cancer diagnosis was 79 weeks (IQR 60-106 weeks). In the matched control group, 22 (17.6\%) participants returned to work compared with 38 (30.4\%) in the intervention group (P=.02). Additionally, 19 (15.2\%) matched controls died prior to claim closure compared with 13 (10.4\%) in the intervention group (P=.26). The Kaplan-Meier estimated median time for the first 15\% of the cohort to return to work was 87.1 weeks (95\% CI 60.0-109.1 weeks) for the matched control group compared with 70.6 weeks (95\% CI 52.6-79.6 weeks; P=.08) for the intervention group. Conclusions: Patients receiving a remotely delivered coaching program in a real-world setting returned to work at a higher frequency than did control participants receiving usual care. ", doi="10.2196/31966", url="https://cancer.jmir.org/2021/4/e31966", url="http://www.ncbi.nlm.nih.gov/pubmed/34710853" } @Article{info:doi/10.2196/27893, author="El Haidari, Rana and Anota, Amelie and Abou-Abbas, Linda and Nerich, Virginie", title="Health-Related Quality of Life of Lebanese Women With Breast Cancer: Protocol for a Prospective Cohort Study", journal="JMIR Res Protoc", year="2021", month="Nov", day="23", volume="10", number="11", pages="e27893", keywords="breast cancer", keywords="cohort", keywords="health-related quality of life", keywords="Lebanese women", keywords="prospective", abstract="Background: In the past few decades, Lebanon has witnessed a significant increase in the incidence rates of women diagnosed with breast cancer. This increase, which is associated with the advancements in treatment modalities, emphasizes the need to evaluate the health-related quality of life (HRQoL) of women with breast cancer and to compare its patterns before and after breast-conserving surgery (BCS). Objective: This study aims to describe changes in HRQoL according to body image pre- and post-BCS and just before initiation of adjuvant therapy in newly diagnosed patients with breast cancer in Lebanon. Methods: A prospective cohort study targeting Lebanese women newly diagnosed with breast cancer and who have an indication for BCS will be conducted in 2 health care facilities. Baseline characteristics and clinical data will be collected. The European Organization for Research and Treatment of Cancer Quality-of-Life cancer-specific and breast cancer--specific questionnaires will be used to assess HRQoL. The outcomes will be measured at baseline and 1 day after breast surgery. The primary outcome will be the body image dimensions of the Quality-of-Life breast cancer--specific questionnaire. Statistical analyses will include descriptive statistics, paired 2-tailed t test, and stepwise multiple regression. A total of 120 patients will be required. Results: A total of 120 patients were enrolled in the study. Future outcomes will be published in professional peer-reviewed health-related research journals. Conclusions: This study is strengthened by its follow-up nature, allowing us to draw conclusions about causality. The results of this study will identify the most affected components of HRQoL, as well as the factors that could play a role in improving HRQoL among women undergoing BCS. The findings of this study will help decision makers, physicians, and social workers to design a comprehensive program with multidisciplinary components for the management and care of patients with breast cancer in Lebanon. International Registered Report Identifier (IRRID): DERR1-10.2196/27893 ", doi="10.2196/27893", url="https://www.researchprotocols.org/2021/11/e27893", url="http://www.ncbi.nlm.nih.gov/pubmed/34817382" } @Article{info:doi/10.2196/25783, author="Sun, Weiwei and Luo, Aijing and Bian, Zhiwei and Zhao, Bin and Liu, Peng and Wang, Kai and Liu, Yuwen and Xie, Wenzhao and Wang, Fuzhi", title="Assessing the Quality of Online Health Information About Breast Cancer from Chinese Language Websites: Quality Assessment Survey", journal="JMIR Cancer", year="2021", month="Nov", day="18", volume="7", number="4", pages="e25783", keywords="online health information", keywords="breast cancer", keywords="Chinese language websites", keywords="quantitative evaluations", abstract="Background: In China, the internet has become one of the most important ways to obtain information about breast cancer. However, quantitative evaluations of the quality of Chinese health websites and the breast cancer treatment information they publish are lacking. Objective: This study aimed to evaluate the quality of Chinese breast cancer websites and the value, suitability, and accuracy of the breast cancer treatment information they publish. Methods: Chinese breast cancer health websites were searched and manually screened according to their Alexa and Baidu search engine rankings. For each website included in the survey, which was conducted on April 8, 2019, the three most recently published papers on the website that met the inclusion criteria were included for evaluation. Three raters assessed all materials using the LIDA, DISCERN, and Suitability Assessment of Materials (SAM) tools and the Michigan Checklist. Data analysis was completed with the Statistical Package for Social Sciences (SPSS) version 20.0 and Microsoft Excel 2010. Results: This survey included 20 Chinese breast cancer websites and 60 papers on breast cancer treatment. The LIDA tool was used to evaluate the quality of the 20 websites. The LIDA's scores of the websites (mean=54.85, SD 3.498; total possible score=81) were low. In terms of the layout, color scheme, search facility, browsing facility, integration of nontextual media, submission of comments, declaration of objectives, content production method, and robust method, more than half of the websites scored 0 (never) or 1 (sometimes). For the online breast cancer treatment papers, the scores were generally low. Regarding suitability, 32 (53.33\%) papers were evaluated as presenting unsuitable material. Regarding accuracy, the problems were that the papers were largely not original (44/60, 73\%) and lacked references (46/60, 77\%). Conclusions: The quality of Chinese breast cancer websites is poor. The color schemes, text settings, user comment submission functions, and language designs should be improved. The quality of Chinese online breast cancer treatment information is poor; the information has little value to users, and pictorial information is scarcely used. The online breast cancer treatment information is accurate but lacks originality and references. Website developers, governments, and medical professionals should play a full role in the design of health websites, the regulation of online health information, and the use of online health information. ", doi="10.2196/25783", url="https://cancer.jmir.org/2021/4/e25783", url="http://www.ncbi.nlm.nih.gov/pubmed/34792471" } @Article{info:doi/10.2196/22140, author="Su, Zhaohui and Li, Xiaoshan and McDonnell, Dean and Fernandez, A. Andrea and Flores, E. Bertha and Wang, Jing", title="Technology-Based Interventions for Cancer Caregivers: Concept Analysis", journal="JMIR Cancer", year="2021", month="Nov", day="16", volume="7", number="4", pages="e22140", keywords="concept analysis", keywords="caregivers", keywords="cancer", keywords="oncology", keywords="technology-based interventions", keywords="mobile phone", abstract="Background: Cancer is a taxing chronic disease that demands substantial care, most of which is shouldered by informal caregivers. As a result, cancer caregivers often have to manage considerable challenges that could result in severe physical and psychological health consequences. Technology-based interventions have the potential to address many, if not all, of the obstacles caregivers encounter while caring for patients with cancer. However, although the application of technology-based interventions is on the rise, the term is seldom defined in research or practice. Considering that the lack of conceptual clarity of the term could compromise the effectiveness of technology-based interventions for cancer caregivers, timely research is needed to bridge this gap. Objective: This study aims to clarify the meaning of technology-based interventions in the context of cancer caregiving and provide a definition that can be used by cancer caregivers, patients, clinicians, and researchers to facilitate evidence-based research and practice. Methods: The 8-step concept analysis method by Walker and Avant was used to analyze the concept of technology-based interventions in the context of cancer caregiving. PubMed, PsycINFO, CINAHL, and Scopus were searched for studies that examined technology-based interventions for cancer caregivers. Results: The defining attributes of technology-based interventions were recognized as being accessible, affordable, convenient, and user-friendly. On the basis of insights gained on the defining attributes, antecedents to, and consequences of technology-based interventions through the concept analysis process, technology-based interventions were defined as the use of technology to design, develop, and deliver health promotion contents and strategies aimed at inducing or improving positive physical or psychological health outcomes in cancer caregivers. Conclusions: This study clarified the meaning of technology-based interventions in the context of cancer caregiving and provided a clear definition that can be used by caregivers, patients, clinicians, and researchers to facilitate evidence-based oncology practice. A clear conceptualization of technology-based interventions lays foundations for better intervention design and research outcomes, which in turn have the potential to help health care professionals address the needs and preferences of cancer caregivers more cost-effectively. ", doi="10.2196/22140", url="https://cancer.jmir.org/2021/4/e22140", url="http://www.ncbi.nlm.nih.gov/pubmed/34783664" } @Article{info:doi/10.2196/26310, author="Chen, Liang and Wang, Pianpian and Ma, Xin and Wang, Xiaohui", title="Cancer Communication and User Engagement on Chinese Social Media: Content Analysis and Topic Modeling Study", journal="J Med Internet Res", year="2021", month="Nov", day="10", volume="23", number="11", pages="e26310", keywords="cancer-related information", keywords="social media", keywords="topic modeling", keywords="user engagement", keywords="Weibo", keywords="cancer", abstract="Background: Cancer ranks among the most serious public health challenges worldwide. In China---the world's most populous country---about one-quarter of the population consists of people with cancer. Social media has become an important platform that the Chinese public uses to express opinions. Objective: We investigated cancer-related discussions on the Chinese social media platform Weibo (Sina Corporation) to identify cancer topics that generate the highest levels of user engagement. Methods: We conducted topic modeling and regression analyses to analyze and visualize cancer-related messages on Weibo and to examine the relationships between different cancer topics and user engagement (ie, the number of retweets, comments, and likes). Results: Our results revealed that cancer communication on Weibo has generally focused on the following six topics: social support, cancer treatment, cancer prevention, women's cancers, smoking and skin cancer, and other topics. Discussions about social support and cancer treatment attracted the highest number of users and received the greatest numbers of retweets, comments, and likes. Conclusions: Our investigation of cancer-related communication on Weibo provides valuable insights into public concerns about cancer and can help guide the development of health campaigns in social media. ", doi="10.2196/26310", url="https://www.jmir.org/2021/11/e26310", url="http://www.ncbi.nlm.nih.gov/pubmed/34757320" } @Article{info:doi/10.2196/28322, author="Wright, Hayley and Martin, Faith and Clyne, Wendy and Clark, T. Cain C. and Matouskova, Gabriela and McGillion, Michael and Turner, Andrew", title="A Digital Self-management Program (Help to Overcome Problems Effectively) for People Living With Cancer: Feasibility Randomized Controlled Trial", journal="J Med Internet Res", year="2021", month="Nov", day="5", volume="23", number="11", pages="e28322", keywords="self-management", keywords="cancer", keywords="survivorship", keywords="digital", keywords="positive psychology", abstract="Background: We present the results of a feasibility, randomized waitlist control group (CG) parallel design study with a 1:1 allocation ratio. Participants were randomized into an intervention group (IG) or a waitlist CG. The intervention was a 6-week digital self-management program, Help to Overcome Problems Effectively (HOPE), for people with cancer. Objective: This study aims to test the feasibility of a digitally delivered self-management program for people with cancer. This will inform the design of a definitive randomized controlled trial. In addition, a preliminary assessment of the impact of the HOPE program via secondary outcomes will be used to assess signals of efficacy in a trial context. Methods: Participants were drawn from an opportunity sample, referred by Macmillan Cancer Support, and were invited via email to participate in the study (N=61). Primary outcomes were rates of recruitment, retention, follow-up, completion and adherence, sample size and effect size estimation, and assessment of progression criteria for a definitive trial. Secondary outcomes were self-report measures of participants' positive mental well-being, depression, anxiety, and patient activation (ie, confidence in managing their cancer). The intervention and data collection took place on the web. Results: The recruitment rate was 77\% (47/61). A total of 41 participants completed the baseline questionnaires and were randomized to either the IG (n=21) or the waitlist CG (n=20). The retention rate (attending all program sessions) was greater than 50\% (all: 21/41, 51\%, IG: 10/21, 48\%; and CG: 11/20, 55\%). The follow-up rate (completing all questionnaires) was greater than 80\% (all: 33/41, 80\%; IG: 16/21, 76\%; and CG: 17/20, 85\%). The completion rate (attending ?3 sessions and completing all questionnaires) was greater than 60\% (all: 25/41, 61\%; IG: 13/21, 62\%; and CG: 12/20, 60\%). Engagement data showed that participants viewed between half (5.1/10, 51\%) and three-quarters (12.2/16, 76\%) of the pages in each session. Conclusions: All progression criteria for a definitive trial were met, as supported by the primary outcome data. The IG showed improved postprogram scores on measures of positive mental well-being, depression, anxiety, and patient activation. A full-scale trial of the digital HOPE program for people with cancer will allow us to fully evaluate the efficacy of the intervention relative to a CG. Trial Registration: ISRCTN Registry ISRCTN79623250; http://www.isrctn.com/ISRCTN79623250 International Registered Report Identifier (IRRID): RR2-10.2196/24264 ", doi="10.2196/28322", url="https://www.jmir.org/2021/11/e28322", url="http://www.ncbi.nlm.nih.gov/pubmed/34738912" } @Article{info:doi/10.2196/32005, author="Kamba, Masaru and Manabe, Masae and Wakamiya, Shoko and Yada, Shuntaro and Aramaki, Eiji and Odani, Satomi and Miyashiro, Isao", title="Medical Needs Extraction for Breast Cancer Patients from Question and Answer Services: Natural Language Processing-Based Approach", journal="JMIR Cancer", year="2021", month="Oct", day="28", volume="7", number="4", pages="e32005", keywords="natural language processing", keywords="internet use", keywords="patient generated health data", keywords="neoplasms", abstract="Background: A large number of patient narratives are available on various web services. As for web question and answer services, patient questions often relate to medical needs, and we expect these questions to provide clues for a better understanding of patients' medical needs. Objective: This study aimed to extract patients' needs and classify them into thematic categories. Clarifying patient needs is the first step in solving social issues that patients with cancer encounter. Methods: For this study, we used patient question texts containing the key phrase ``breast cancer,`` available at the Yahoo! Japan question and answer service, Yahoo! Chiebukuro, which contains over 60,000 questions on cancer. First, we converted the question text into a vector representation. Next, the relevance between patient needs and existing cancer needs categories was calculated based on cosine similarity. Results: The proportion of correct classifications in our proposed method was approximately 70\%. Considering the results of classifying questions, we found the variation and the number of needs. Conclusions: We created 3 corpora to classify the problems of patients with cancer. The proposed method was able to classify the problems considering the question text. Moreover, as an application example, the question text that included the side effect signaling of drugs and the unmet needs of cancer patients could be extracted. Revealing these needs is important to fulfill the medical needs of patients with cancer. ", doi="10.2196/32005", url="https://cancer.jmir.org/2021/4/e32005", url="http://www.ncbi.nlm.nih.gov/pubmed/34709187" } @Article{info:doi/10.2196/29763, author="Persson, Johanna and Clifford, Douglas and Wallerg{\aa}rd, Mattias and Sand{\'e}n, Ulrika", title="A Virtual Smash Room for Venting Frustration or Just Having Fun: Participatory Design of Virtual Environments in Digitally Reinforced Cancer Rehabilitation", journal="JMIR Rehabil Assist Technol", year="2021", month="Oct", day="7", volume="8", number="4", pages="e29763", keywords="virtual reality", keywords="virtual environment", keywords="cancer rehabilitation", keywords="emotions", keywords="participatory design", keywords="virtual smash room", keywords="human factors", abstract="Background: Cancer rehabilitation is central for helping patients and relatives create a functional everyday life based on the changes in life conditions. The needs are highly individual and include physical, mental, and social challenges. Cancer rehabilitation programs offer coping strategies, including guidelines on how to handle emotions. Objective: This paper presents a participatory design activity where patients in cancer rehabilitation use a virtual smash room, which is a virtual environment where the user can break things, mainly porcelain or glass items such as vases or plates. The objective is to understand attitudes to, and some effects of, using this application, as well as eliciting ideas of other virtual environments that would be desired. Methods: The virtual environment presented here, the virtual smash room, was designed at the request of a patient with cancer who wanted a tool for venting frustration. In this virtual environment, the user can break porcelain, vases, and plates. Patients participating in a week-long cancer rehabilitation program tested the virtual smash room and reported their experiences through a questionnaire. The questionnaire comprised three sections: (1) a subset of the Intrinsic Motivation Inventory (IMI), (2) a subset of the Virtual Reality Symptoms Questionnaire (VRSQ), and (3) a free-text response section. Results: A total of 101 responses were gathered. The results from the IMI questions showed that the participants found the virtual experience enjoyable (mean 4.52, maximum 5, SD 0.73), and it helped them retain their focus (mean 4.44, maximum 5, SD 0.74). The VRSQ revealed that there were only minor symptoms related to general discomfort (5.9\%, n=6), fatigue (5.9\%, n=6), nausea (3.0\%, n=3), and tired eyes (8.9\%, n=9), while several participants experienced dizziness (22.8\%, n=23). Since only postmeasurements were gathered, nothing could be concluded about the prevalence of these symptoms before testing. The free-text responses indicated that the user group had many ideas for other virtual environments to use in cancer rehabilitation. Conclusions: This study presents a concept of using virtual reality in the cancer rehabilitation process and exemplifies activities of patient participation in the design process. Virtual reality has potential in being both distracting and enjoyable, while certain aspects of cybersickness might be especially important to consider for a user group already experiencing physical and mental issues. The results will act as input in the process of further designing virtual applications in digitally reinforced cancer rehabilitation. ", doi="10.2196/29763", url="https://rehab.jmir.org/2021/4/e29763", url="http://www.ncbi.nlm.nih.gov/pubmed/34617913" } @Article{info:doi/10.2196/30950, author="Lu, Qian and Warmoth, Krystal and Chen, Lingjun and Wu, S. Christine and Chu, Qiao and Li, Yisheng and Gallagher, W. Matthew and Stanton, L. Annette and Kagawa Singer, Marjorie and Young, Lucy and Loh, Alice", title="A Culturally Sensitive Social Support Intervention for Chinese American Breast Cancer Survivors (Joy Luck Academy): Protocol for a Randomized Controlled Trial", journal="JMIR Res Protoc", year="2021", month="Sep", day="22", volume="10", number="9", pages="e30950", keywords="social support", keywords="peer mentor support", keywords="randomized controlled trial", keywords="Chinese cancer survivors", keywords="breast cancer", abstract="Background: Breast cancer is the most prevalent type of cancer among Asian American women. Chinese American immigrant breast cancer survivors face unique challenges because of cultural and socioecological factors. They report emotional distress and the need for social, emotional, and spiritual support. However, culturally and linguistically appropriate information for managing survivorship health care is often unavailable. Objective: To improve the health outcomes for this underserved and understudied population, we developed, designed, and launched a randomized controlled trial to test the health benefits of a culturally sensitive social support intervention (Joy Luck Academy). In this paper, we describe the research protocol. Methods: This randomized controlled trial will enroll Chinese-speaking, stage 0 to 3 breast cancer survivors who have completed treatment within the previous 36 months using a community-based participatory research approach. We will randomly assign 168 participants to the intervention or control group. The intervention arm will attend 7 weekly 3.5-hour peer mentor and educational sessions. The control group will receive the educational information. We will assess health outcomes at baseline, immediately after the Joy Luck Academy, and at 1- and 4-month follow-ups. The primary outcome is quality of life, as measured by the Functional Assessment of Cancer Therapy scale. Secondary outcomes include depressive symptoms, positive affect, fatigue, and perceived stress. We will also explore how the intervention influences cortisol levels. To identify how and to whom the program is effective, we will measure social and personal resources and theorized mechanisms and perform qualitative interviews with a subsample of participants to enhance the interpretation of quantitative data. Results: Recruitment began in February 2015, and data collection was completed in February 2019. We expect to complete data management by August 2021 and publish results in 2022. Conclusions: If the Joy Luck Academy is demonstrated to be effective, it may be easily disseminated as an intervention for other groups of Asian American immigrant breast cancer survivors. Furthermore, similar programs could be integrated into other diverse communities. Trial Registration: ClinicalTrials.gov NCT02946697; http://clinicaltrials.gov/ct2/show/NCT02946697. International Registered Report Identifier (IRRID): DERR1-10.2196/30950 ", doi="10.2196/30950", url="https://www.researchprotocols.org/2021/9/e30950", url="http://www.ncbi.nlm.nih.gov/pubmed/34550088" } @Article{info:doi/10.2196/31976, author="Hulbert-Williams, J. Nicholas and Leslie, Monica and Hulbert-Williams, Lee and Koczwara, Bogda and Watson, K. Eila and Hall, S. Peter and Ashley, Laura and Coulson, S. Neil and Jackson, Richard and Millington, Sue and and Beatty, Lisa", title="The Finding My Way UK Clinical Trial: Adaptation Report and Protocol for a Replication Randomized Controlled Efficacy Trial of a Web-Based Psychological Program to Support Cancer Survivors", journal="JMIR Res Protoc", year="2021", month="Sep", day="20", volume="10", number="9", pages="e31976", keywords="cancer", keywords="survivorship", keywords="psychosocial intervention", keywords="digital health", keywords="quality of life", keywords="protocol", keywords="mobile phone", abstract="Background: Cancer survivors frequently report a range of unmet psychological and supportive care needs; these often continue after treatment has finished and are predictive of psychological distress and poor health-related quality of life. Web-based interventions demonstrate good efficacy in addressing these concerns and are more accessible than face-to-face interventions. Finding My Way (FMW) is a web-based, psycho-educational, and cognitive behavioral therapy intervention for cancer survivors developed in Australia. Previous trials have demonstrated that FMW is acceptable, highly adhered to, and effective in reducing the impact of distress on quality of life while leading to cost savings through health resource use reduction. Objective: This study aims to adapt the Australian FMW website for a UK cancer care context and then undertake a single-blinded, randomized controlled trial of FMW UK against a treatment-as-usual waitlist control. Methods: To an extent, our trial design replicates the existing Australian randomized controlled trial of FMW. Following a comprehensive adaptation of the web resource, we will recruit 294 participants (147 per study arm) from across clinical sites in North West England and North Wales. Participants will have been diagnosed with cancer of any type in the last 6 months, have received anticancer treatment with curative intent, be aged ?16 years, be proficient in English, and have access to the internet and an active email address. Participants will be identified and recruited through the National Institute for Health Research clinical research network. Measures of distress, quality of life, and health economic outcomes will be collected using a self-report web-based questionnaire at baseline, midtreatment, posttreatment, and both 3- and 6-month follow-up. Quantitative data will be analyzed using intention-to-treat mixed model repeated measures analysis. Embedded semistructured qualitative interviews will probe engagement with, and experiences of using, FMW UK and suggestions for future improvements. Results: The website adaptation work was completed in January 2021. A panel of cancer survivors and health care professionals provided feedback on the test version of FMW UK. Feedback was positive overall, although minor updates were made to website navigation, inclusivity, terminology, and the wording of the Improving Communication and Sexuality and Intimacy content. Recruitment for the clinical trial commenced in April 2021. We aim to report on findings from mid-2023. Conclusions: Replication studies are an important aspect of the scientific process, particularly in psychological and clinical trial literature, especially in different geographical settings. Before replicating the FMW trial in the UK setting, content updating was required. If FMW UK now replicates Australian findings, we will have identified a novel and cost-effective method of psychosocial care delivery for cancer survivors in the United Kingdom. Trial Registration: International Standard Randomized Controlled Trial Number (ISRCTN) 14317248; https://www.isrctn.com/ISRCTN14317248 International Registered Report Identifier (IRRID): DERR1-10.2196/31976 ", doi="10.2196/31976", url="https://www.researchprotocols.org/2021/9/e31976", url="http://www.ncbi.nlm.nih.gov/pubmed/34542420" } @Article{info:doi/10.2196/24515, author="Wartenberg, Lisa and Raber, Margaret and Chandra, Joya", title="Unique Features of a Web-Based Nutrition Website for Childhood Cancer Populations: Descriptive Study", journal="J Med Internet Res", year="2021", month="Sep", day="13", volume="23", number="9", pages="e24515", keywords="pediatric oncology", keywords="web-based resources", keywords="oncology nutrition", keywords="culinary education", keywords="oncology", keywords="children", keywords="pediatric", keywords="nutrition", keywords="culinary", keywords="education", abstract="Background: Children with cancer experience a myriad of nutritional challenges that impact their nutrition status during treatment and into survivorship. Growing evidence suggests that weight at diagnosis impacts cancer outcomes, but provider guidance on nutrition and diet during treatment varies. Nutrition literacy and culinary resources may help mitigate some common nutritional problems; however, many patients may face barriers to accessing in-person classes. Along with dietitian-led clinical interventions, web-based resources such as the newly updated electronic cookbook (e-cookbook) created by The University of Texas MD Anderson Cancer Center, @TheTable, may facilitate access to nutrition and culinary education during treatment and into survivorship. Objective: We sought to define and describe the features and content of the @TheTable e-cookbook and compare it with analogous resources for a lay audience of patients with childhood cancer and childhood cancer survivors as well as their families. Methods: We evaluated freely available web-based resources via a popular online search engine (ie, Google). These searches yielded three web-based resources analogous to @TheTable: the American Institute for Cancer Research's Healthy Recipes, The Children's Hospital of San Antonio's Culinary Health Education for Families Recipe for Life, and Ann Ogden Gaffney and Fred Hutchinson Cancer Research Center's Cook for Your Life. These sites were analyzed for the following: number of recipes, search functionality, child or family focus, cancer focus, specific dietary guidance, videos or other media, and miscellaneous unique features. Results: Cook for Your Life and Culinary Health Education for Families Recipe for Life were the most comparable to @TheTable with respect to cancer focus and family focus, respectively. Healthy Recipes is the least user-friendly, with few search options and no didactic videos. Conclusions: The @TheTable e-cookbook is unique in its offering of child- and family-focused content centered on the cancer and survivorship experience. ", doi="10.2196/24515", url="https://www.jmir.org/2021/9/e24515", url="http://www.ncbi.nlm.nih.gov/pubmed/34515643" } @Article{info:doi/10.2196/29555, author="Andy, Anietie and Andy, Uduak", title="Understanding Communication in an Online Cancer Forum: Content Analysis Study", journal="JMIR Cancer", year="2021", month="Sep", day="7", volume="7", number="3", pages="e29555", keywords="Cancer", keywords="Reddit", keywords="online forum", keywords="natural language processing", keywords="latent Dirichlet allocation", keywords="Linguistic Inquiry and Word Count", keywords="psycholinguistics", keywords="social media", abstract="Background: Cancer affects individuals, their family members, and friends, and increasingly, some of these individuals are turning to online cancer forums to express their thoughts/feelings and seek support such as asking cancer-related questions. The thoughts/feelings expressed and the support needed from these online forums may differ depending on if (1) an individual has or had cancer or (2) an individual is a family member or friend of an individual who has or had cancer; the language used in posts in these forums may reflect these differences. Objective: Using natural language processing methods, we aim to determine the differences in the support needs and concerns expressed in posts published on an online cancer forum by (1) users who self-declare to have or had cancer compared with (2) users who self-declare to be family members or friends of individuals with or that had cancer. Methods: Using latent Dirichlet allocation (LDA), which is a natural language processing algorithm and Linguistic Inquiry and Word Count (LIWC), a psycholinguistic dictionary, we analyzed posts published on an online cancer forum with the aim to delineate the language features associated with users in these different groups. Results: Users who self-declare to have or had cancer were more likely to post about LDA topics related to hospital visits (Cohen d=0.671) and use words associated with LIWC categories related to health (Cohen d=0.635) and anxiety (Cohen d=0.126). By contrast, users who declared to be family members or friends tend to post about LDA topics related to losing a family member (Cohen d=0.702) and LIWC categories focusing on the past (Cohen d=0.465) and death (Cohen d=0.181) were more associated with these users. Conclusions: Using LDA and LIWC, we show that there are differences in the support needs and concerns expressed in posts published on an online cancer forum by users with cancer compared with family members or friends of those with cancer. Hence, responders to online cancer forums need to be cognizant of these differences in support needs and concerns and tailor their responses based on these findings. ", doi="10.2196/29555", url="https://cancer.jmir.org/2021/3/e29555", url="http://www.ncbi.nlm.nih.gov/pubmed/34491209" } @Article{info:doi/10.2196/28234, author="Lazard, J. Allison and Collins, Reffner Meredith K. and Hedrick, Ashley and Varma, Tushar and Love, Brad and Valle, G. Carmina and Brooks, Erik and Benedict, Catherine", title="Using Social Media for Peer-to-Peer Cancer Support: Interviews With Young Adults With Cancer", journal="JMIR Cancer", year="2021", month="Sep", day="2", volume="7", number="3", pages="e28234", keywords="cancer survivors", keywords="social support", keywords="peer groups", keywords="social media", keywords="young adults", keywords="pyscho-oncology", keywords="mobile phone", abstract="Background: Web-based social support can address social isolation and unmet support needs among young adults with cancer (aged 18-39 years). Given that 94\% of young adults own and use smartphones, social media can offer personalized, accessible social support among peers with cancer. Objective: This study aims to examine the specific benefits, downsides, and topics of social support via social media among young adults with cancer. Methods: We conducted semistructured interviews with young adults with cancer, aged between 18 and 39 years, who were receiving treatment or had completed treatment for cancer. Results: Most participants (N=45) used general audience platforms (eg, Facebook groups), and some cancer-specific social media (eg, Caring Bridge), to discuss relevant lived experiences for medical information (managing side effects and treatment uncertainty) and navigating life with cancer (parenting and financial issues). Participants valued socializing with other young adults with cancer, making connections outside their personal networks, and being able to validate their emotional and mental health experiences without time and physical constraints. However, using social media for peer support can be an emotional burden, especially when others post disheartening or harassing content, and can heighten privacy concerns, especially when navigating cancer-related stigma. Conclusions: Social media allows young adults to connect with peers to share and feel validated about their treatment and life concerns. However, barriers exist for receiving support from social media; these could be reduced through content moderation and developing more customizable, potentially cancer-specific social media apps and platforms to enhance one's ability to find peers and manage groups. ", doi="10.2196/28234", url="https://cancer.jmir.org/2021/3/e28234", url="http://www.ncbi.nlm.nih.gov/pubmed/34473063" } @Article{info:doi/10.2196/26395, author="Qin, Lei and Zhang, Xiaomei and Wu, Anlin and Miser, S. James and Liu, Yen-Lin and Hsu, C. Jason and Shia, Ben-Chang and Ye, Linglong", title="Association Between Social Media Use and Cancer Screening Awareness and Behavior for People Without a Cancer Diagnosis: Matched Cohort Study", journal="J Med Internet Res", year="2021", month="Aug", day="27", volume="23", number="8", pages="e26395", keywords="social media", keywords="cancer screening awareness", keywords="cancer screening behavior", keywords="gender-specific effects", keywords="propensity-score matching", keywords="general population", abstract="Background: The use of social media in communications regarding cancer prevention is rapidly growing. However, less is known about the general population's social media use related to cancer screening awareness and behavior for different cancers. Objective: We aimed to examine the relationship between social media use and cancer screening awareness and behavior among people without a cancer diagnosis. Methods: Data were collected from the Health Information National Trends Survey 5 Cycle 1 to 3 in the United States (n=12,227). Our study included 10,124 participants without a cancer diagnosis and 3 measures of screening awareness (those who had heard of hepatitis C virus [HCV], human papillomavirus [HPV], and the HPV vaccine) and 4 measures of behavior (those who had prostate-specific antigen tests, Papanicolaou tests for cervical cancer, as well as breast cancer and colon cancer tests). Propensity-score matching was conducted to adjust for the sociodemographic variables between the social media user and nonuser participants. Multivariable logistic regression was used to assess the association of social media use by gender. Jackknife replicate weights were incorporated into the analyses. Results: Of the 3794 matched participants, 1861 (57.6\% weighted) were male, and the mean age was 55.5 (SD 0.42) years. Compared to social media nonusers, users were more likely to have heard of HCV (adjusted odds ratio [aOR]=2.27, 95\% CI, 1.29-3.98 and aOR=2.86, 95\% CI, 1.51-5.40, for male and female users, respectively) and HPV (aOR=1.82, 95\% CI, 1.29-2.58 and aOR=2.35, 95\% CI, 1.65-3.33, for male and female users, respectively). In addition, female users were more likely to have heard of the HPV vaccine (aOR=2.06, 95\% CI, 1.41-3.00). No significant associations were found between social media use and prostate-specific antigen tests in males, Papanicolaou tests and breast cancer tests in females, or colon cancer tests in both male and female users. Conclusions: While social media services can potentially promote cancer screening awareness in the general population, but they did not improve screening behavior after adjusting for socioeconomic status. These findings strengthened our understanding of social media use in targeting health communications for different cancers. ", doi="10.2196/26395", url="https://www.jmir.org/2021/8/e26395", url="http://www.ncbi.nlm.nih.gov/pubmed/34448708" } @Article{info:doi/10.2196/23367, author="Lange-Drenth, Lukas and Schulz, Holger and Endsin, Gero and Bleich, Christiane", title="Patients With Cancer Searching for Cancer- or Health-Specific Web-Based Information: Performance Test Analysis", journal="J Med Internet Res", year="2021", month="Aug", day="16", volume="23", number="8", pages="e23367", keywords="telemedicine", keywords="eHealth", keywords="eHealth literacy", keywords="digital literacy", keywords="internet", keywords="web-based", keywords="health information", keywords="health education", keywords="cancer", keywords="mobile phone", abstract="Background: Searching the internet for cancer-related information helps patients with cancer satisfy their unmet information needs and empowers them to play a more active role in the management of their disease. However, to benefit from the search, patients need a sufficient level of skill to search, select, appraise, and apply web-based health information. Objective: We aim to study the operational, navigational, information, and evaluation skills and problems of patients with cancer performing cancer-related search tasks using the internet. Methods: A total of 21 patients with cancer were recruited during their stay at the rehabilitation clinic for oncological rehabilitation. Participants performed eight cancer-related search tasks using the internet. The participants were asked to think aloud while performing the tasks, and the screen activities were recorded. The types and frequencies of performance problems were identified and coded into categories following an inductive coding process. In addition, the performance and strategic characteristics of task execution were summarized descriptively. Results: All participants experienced problems or difficulties in executing the tasks, and a substantial percentage of tasks (57/142, 40.1\%) could not be completed successfully. The participants' performance problems were coded into four categories, namely operating the computer and web browser, navigating and orientating, using search strategies, and evaluating the relevance and reliability of web-based information. The most frequent problems occurred in the third and fourth categories. A total of 90\% (19/21) of participants used nontask-related search terms or nonspecific search terms. A total of 95\% (20/21) of participants did not control for the source or topicality of the information found. In addition, none of the participants verified the information on 1 website with that on another website for each task. Conclusions: A substantial group of patients with cancer did not have the necessary skills to benefit from cancer-related internet searches. Future interventions are needed to support patients in the development of sufficient internet-searching skills, focusing particularly on information and evaluation skills. ", doi="10.2196/23367", url="https://www.jmir.org/2021/8/e23367", url="http://www.ncbi.nlm.nih.gov/pubmed/34398801" } @Article{info:doi/10.2196/22709, author="Woodford, Joanne and Farrand, Paul and Hagstr{\"o}m, Josefin and Hedenmalm, Li and von Essen, Louise", title="Internet-Administered Cognitive Behavioral Therapy for Common Mental Health Difficulties in Parents of Children Treated for Cancer: Intervention Development and Description Study", journal="JMIR Form Res", year="2021", month="Jul", day="22", volume="5", number="7", pages="e22709", keywords="parents", keywords="eMental health", keywords="internet-administered cognitive behavioral therapy", keywords="ICBT", keywords="TIDieR", keywords="CBT self-help", keywords="low-intensity CBT", keywords="mobile phone", abstract="Background: Following the end of a child's treatment for cancer, parents may report psychological distress. However, there is a lack of evidence-based interventions that are tailored to the population, and psychological support needs are commonly unmet. An internet-administered low-intensity cognitive behavioral therapy (LICBT)--based intervention (EJDeR [internetbaserad sj{\"a}lvhj{\"a}lp f{\"o}r f{\"o}r{\"a}ldrar till barn som avslutat en behandling mot cancer]) may provide a solution. Objective: The first objective is to provide an overview of a multimethod approach that was used to inform the development of the EJDeR intervention. The second objective is to provide a detailed description of the EJDeR intervention in accordance with the Template for Intervention Description and Replication (TIDieR) checklist. Methods: EJDeR was developed through a multimethod approach, which included the use of existing evidence, the conceptualization of distress, participatory action research, a cross-sectional survey, and professional and public involvement. Depending on the main presenting difficulty identified during assessment, LICBT behavioral activation or worry management treatment protocols are adopted for the treatment of depression or generalized anxiety disorder when experienced individually or when comorbid. EJDeR is delivered via the Uppsala University Psychosocial Care Programme (U-CARE) portal, a web-based platform that is designed to deliver internet-administered LICBT interventions and includes secure videoconferencing. To guide parents in the use of EJDeR, weekly written messages via the portal are provided by e-therapists comprising final year psychology program students with training in cognitive behavioral therapy. Results: An overview of the development process and a description of EJDeR, which was informed by the TIDieR checklist, are presented. Adaptations that were made in response to public involvement are highlighted. Conclusions: EJDeR represents a novel, guided, internet-administered LICBT intervention for supporting parents of children treated for cancer. Adopting the TIDieR checklist offers the potential to enhance fidelity to the intervention protocol and facilitate later implementation. The intervention is currently being tested in a feasibility study (the ENGAGE study). International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2018-023708 ", doi="10.2196/22709", url="https://formative.jmir.org/2021/7/e22709", url="http://www.ncbi.nlm.nih.gov/pubmed/34142662" } @Article{info:doi/10.2196/30735, author="Alavi, Nazanin and Stephenson, Callum and Miller, Shad{\'e} and Khalafi, Payam and Sinan, Israa and Kain, Danielle and McDougall, Maggie and Davies, Julia and Stark, Debora and Tompkins, Erin and Jagayat, Jasleen and Omrani, Mohsen and Shirazi, Amirhossein and Groll, Dianne and Soares, Claudio", title="Developing and Implementing a Web-Based Psychotherapy Program to Address Mental Health Challenges Among Patients Receiving Oncologic and Palliative Care: Protocol for an Open-Label Randomized Controlled Trial", journal="JMIR Res Protoc", year="2021", month="Jul", day="14", volume="10", number="7", pages="e30735", keywords="anxiety", keywords="cognitive behavioral therapy", keywords="depression", keywords="eHealth", keywords="electronic care", keywords="internet", keywords="mental health treatment", keywords="oncology", keywords="palliative care", keywords="psychotherapy", abstract="Background: The demand for mental health care, particularly for depression and anxiety, is 3-fold greater among patients receiving oncologic and palliative care than for the general population. This population faces unique barriers, making them more susceptible to mental health challenges. Various forms of psychotherapy have been deemed effective in addressing mental health challenges in this population, including supportive psychotherapy, cognitive behavioral therapy, problem-based therapy, and mindfulness; however, their access to traditional face-to-face psychotherapy resources is limited owing to their immunocompromised status, making frequent hospital visits dangerous. Additionally, patients can face hospital fatigue from numerous appointments and investigations or may live in remote areas, which makes commutes both physically and financially challenging. Web-based psychotherapy is a promising solution to address these accessibility barriers. Moreover, web-based psychotherapy has been proven effective in addressing depression and anxiety in other populations and may be implementable among patients receiving oncologic and palliative care. Objective: The study will investigate the feasibility and effectiveness of web-based psychotherapy among patients receiving oncologic and palliative care, who have comorbid depression or anxiety. We hypothesized that this program will be a viable and efficacious treatment modality compared to current treatment modalities in addressing depression and anxiety symptoms in this population. Methods: Participants (n=60) with depression or anxiety will be recruited from oncology and palliative care settings in Kingston (Ontario, Canada). Participants will be randomly allocated to receive either 8 weeks of web-based psychotherapy plus treatment as usual (treatment arm) or treatment as usual exclusively (control arm). The web-based psychotherapy program will incorporate cognitive behavioral therapy, mindfulness, and problem-solving skills, and homework assignments with personalized feedback from a therapist. All web-based programs will be delivered through a secure platform specifically designed for web-based psychotherapy delivery. To evaluate treatment efficacy, all participants will complete standardized symptomology questionnaires at baseline, midpoint (week 4), and posttreatment. Results: The study received ethics approval in February 2021 and began recruiting participants in April 2021. Participant recruitment has been conducted through social media advertisements, physical advertisements, and physician referrals. To date, 11 participants (treatment, n=5; control, n=4; dropout, n=2) have been recruited. Data collection and analysis are expected to conclude by December 2021 and January 2022, respectively. Linear regression (for continuous outcomes) will be conducted with interpretive qualitative methods. Conclusions: Our findings can be incorporated into clinical policy and help develop more accessible mental health treatment options for patients receiving oncologic and palliative care. Asynchronous and web-based psychotherapy delivery is a more accessible, scalable, and financially feasible treatment that could have major implications on the health care system. Trial Registration: ClinicalTrials.gov NCT04664270; https://clinicaltrials.gov/ct2/show/NCT04664270 International Registered Report Identifier (IRRID): DERR1-10.2196/30735 ", doi="10.2196/30735", url="https://www.researchprotocols.org/2021/7/e30735", url="http://www.ncbi.nlm.nih.gov/pubmed/34259164" } @Article{info:doi/10.2196/23670, author="de Looper, Melanie and van Weert, M. Julia C. and Schouten, C. Barbara and Bolle, Sifra and Belgers, J. Eric H. and Eddes, H. Eric and Smets, A. Ellen M.", title="The Influence of Online Health Information Seeking Before a Consultation on Anxiety, Satisfaction, and Information Recall, Mediated by Patient Participation: Field Study", journal="J Med Internet Res", year="2021", month="Jul", day="5", volume="23", number="7", pages="e23670", keywords="online health seeking", keywords="patients", keywords="aging", keywords="patient participation", keywords="memory", keywords="anxiety", keywords="patient reported outcomes", keywords="consultation", keywords="health communication", keywords="cancer", abstract="Background: Today, many cancer patients engage in online health information seeking (OHIS). However, little is known about how patients differ in their OHIS levels. In addition, OHIS might influence patient participation during a consultation with a physician, which might mediate the effects on patient outcomes. Objective: The aim of this study is twofold: first, to provide insight into which personal characteristics and psychosocial factors affect patients' OHIS levels and, second, to test the hypothesis that the effects of OHIS on patient outcomes are mediated by patient participation during the consultation. Methods: Patient participation was operationalized in terms of patients' absolute word count; the relative contribution of the patient, compared with the health care provider; and the number of questions and assertions expressed during the consultation. The patient outcomes measured were anxiety after the consultation, satisfaction with the consultation, and information recall. Participants in this study were patients recently diagnosed with colorectal cancer recruited from 6 hospitals in the Netherlands (n=90). Data were collected using questionnaires and audio-recorded consultations of patients with health care providers before their surgery. Results: The results showed that younger patients, higher educated patients, patients with a monitoring coping style, and patients who experienced more cancer-related stress engaged more in OHIS. In turn, OHIS was related to patient participation in terms of the patient's absolute word count but not to the relative contribution to the consultation or expressing questions and assertions. We did not find a relation between OHIS and anxiety and OHIS and recall mediated by patient participation. However, we found that patients' absolute word count significantly mediated the positive association between OHIS and patients' satisfaction with the consultation. Conclusions: Results indicate positive implications of OHIS for patients' care experience and, therefore, the importance of helping patients engage in OHIS. However, the results also suggest that OHIS is only successful in increasing a single aspect of patient participation, which might explain the absence of relations with anxiety and recall. The results suggest that more beneficial effects on patient outcomes may be achieved when health care providers support patients in OHIS. ", doi="10.2196/23670", url="https://www.jmir.org/2021/7/e23670", url="http://www.ncbi.nlm.nih.gov/pubmed/34255657" } @Article{info:doi/10.2196/25069, author="Poort, Hanneke and Ryan, Annelise and MacDougall, Katelyn and Malinowski, Paige and MacDonald, Anna and Markin, Zach and Pirl, William and Greer, Joseph and Fasciano, Karen", title="Feasibility and Acceptability of a Mobile Phone App Intervention for Coping With Cancer as a Young Adult: Pilot Trial and Thematic Analysis", journal="J Med Internet Res", year="2021", month="Jun", day="11", volume="23", number="6", pages="e25069", keywords="mobile phone", keywords="mobile phone application", keywords="cancer", keywords="feasibility", abstract="Background: Many young adult patients do not receive adequate psychosocial services to help them cope with cancer. Objective: This study aims to assess the feasibility and acceptability of a smartphone app (iaya) intervention that was designed to create an engaged community of young adult patients and help them learn emotional coping skills. Methods: For this single-group pilot trial, 25 young adult patients aged 18-39 years who were receiving active cancer treatment were asked to use the iaya app for 12 weeks. To collect app use data, we used Mixpanel, an analytics platform for apps. Feasibility was assessed through rates of app sessions and the number of coping exercises engaged, and intervention acceptability was evaluated by using an app usability questionnaire and through qualitative interviews at study completion. We collected patient-reported outcome data at baseline and at week 12 to explore self-efficacy for coping with cancer, self-efficacy for managing emotions, perceived emotional support, and quality of life. Results: Baseline patient-reported outcome data indicated that participants scored relatively low on perceived emotional support but reasonably high on self-efficacy for coping with cancer and managing emotions as well as quality of life. Participants had a mean of 13 app sessions (SD 14) and 2 coping exercises (SD 3.83) in 12 weeks. Only 9\% (2/23) of participants met our combined feasibility definition of ?10 app sessions and ?3 coping skills from different categories. The participants' mean usability score was 73.7\% (SD 10.84), which exceeded our predefined threshold of ?70\%, and qualitative feedback was generally positive. Conclusions: Although perceived acceptable by patients, the iaya smartphone app did not meet the a priori feasibility criteria as a stand-alone app intervention. Future studies should screen participants for unmet coping needs and consider integrating the app as part of psychosocial care for young adult patients. ", doi="10.2196/25069", url="https://www.jmir.org/2021/6/e25069", url="http://www.ncbi.nlm.nih.gov/pubmed/34114957" } @Article{info:doi/10.2196/26264, author="Kim, Sue and Aceti, Monica and Baroutsou, Vasiliki and B{\"u}rki, Nicole and Caiata-Zufferey, Maria and Cattaneo, Marco and Chappuis, O. Pierre and Ciorba, M. Florina and Graffeo-Galbiati, Rossella and Heinzelmann-Schwarz, Viola and Jeong, Joon and Jung, M. MiSook and Kim, Sung-Won and Kim, Jisun and Lim, Cheol Myong and Ming, Chang and Monnerat, Christian and Park, Seok Hyung and Park, Hyung Sang and Pedrazzani, A. Carla and Rabaglio, Manuela and Ryu, Min Jai and Saccilotto, Ramon and Wieser, Simon and Z{\"u}rrer-H{\"a}rdi, Ursina and Katapodi, C. Maria", title="Using a Tailored Digital Health Intervention for Family Communication and Cascade Genetic Testing in Swiss and Korean Families With Hereditary Breast and Ovarian Cancer: Protocol for the DIALOGUE Study", journal="JMIR Res Protoc", year="2021", month="Jun", day="11", volume="10", number="6", pages="e26264", keywords="HBOC", keywords="proportion of informed at-risk relatives", keywords="coping", keywords="communicating", keywords="decisional conflict", keywords="cultural and linguistic adaptation", keywords="implementation", keywords="RE-AIM", keywords="mobile phone", abstract="Background: In hereditary breast and ovarian cancer (HBOC), family communication of genetic test results is essential for cascade genetic screening, that is, identifying and testing blood relatives of known mutation carriers to determine whether they also carry the pathogenic variant, and to propose preventive and clinical management options. However, up to 50\% of blood relatives are unaware of relevant genetic information, suggesting that potential benefits of genetic testing are not communicated effectively within family networks. Technology can facilitate communication and genetic education within HBOC families. Objective: The aims of this study are to develop the K-CASCADE (Korean--Cancer Predisposition Cascade Genetic Testing) cohort in Korea by expanding an infrastructure developed by the CASCADE (Cancer Predisposition Cascade Genetic Testing) Consortium in Switzerland; develop a digital health intervention to support the communication of cancer predisposition for Swiss and Korean HBOC families, based on linguistic and cultural adaptation of the Family Gene Toolkit; evaluate its efficacy on primary (family communication of genetic results and cascade testing) and secondary (psychological distress, genetic literacy, active coping, and decision making) outcomes; and explore its translatability using the reach, effectiveness, adoption, implementation, and maintenance framework. Methods: The digital health intervention will be available in French, German, Italian, Korean, and English and can be accessed via the web, mobile phone, or tablet (ie, device-agnostic). K-CASCADE cohort of Korean HBOC mutation carriers and relatives will be based on the CASCADE infrastructure. Narrative data collected through individual interviews or mini focus groups from 20 to 24 HBOC family members per linguistic region and 6-10 health care providers involved in genetic services will identify the local cultures and context, and inform the content of the tailored messages. The efficacy of the digital health intervention against a comparison website will be assessed in a randomized trial with 104 HBOC mutation carriers (52 in each study arm). The translatability of the digital health intervention will be assessed using survey data collected from HBOC families and health care providers. Results: Funding was received in October 2019. It is projected that data collection will be completed by January 2023 and results will be published in fall 2023. Conclusions: This study addresses the continuum of translational research, from developing an international research infrastructure and adapting an existing digital health intervention to testing its efficacy in a randomized controlled trial and exploring its translatability using an established framework. Adapting existing interventions, rather than developing new ones, takes advantage of previous valid experiences without duplicating efforts. Culturally sensitive web-based interventions that enhance family communication and understanding of genetic cancer risk are timely. This collaboration creates a research infrastructure between Switzerland and Korea that can be scaled up to cover other hereditary cancer syndromes. Trial Registration: ClinicalTrials.gov NCT04214210; https://clinicaltrials.gov/ct2/show/NCT04214210 and CRiS KCT0005643; https://cris.nih.go.kr/cris/ International Registered Report Identifier (IRRID): PRR1-10.2196/26264 ", doi="10.2196/26264", url="https://www.researchprotocols.org/2021/6/e26264", url="http://www.ncbi.nlm.nih.gov/pubmed/34114954" } @Article{info:doi/10.2196/27384, author="Emard, Nicholas and Lynch, A. Kathleen and Liou, T. Kevin and Atkinson, Thomas and Green, K. Angela and Daly, Bobby and Trevino, Kelly and Mao, J. Jun", title="Virtual Mind-Body Programming for Patients With Cancer During the COVID-19 Pandemic: Qualitative Study", journal="JMIR Cancer", year="2021", month="Jun", day="8", volume="7", number="2", pages="e27384", keywords="cancer", keywords="fitness", keywords="meditation", keywords="stress", keywords="COVID-19", keywords="qualitative", keywords="coping", keywords="wellbeing", keywords="psychosocial", keywords="virtual health", abstract="Background: Patients with cancer are particularly vulnerable to stress and anxiety during the COVID-19 pandemic. Social distancing is critical for patients with cancer; however, it can also reduce their access to psychosocial coping resources. Objective: The aim of this study was to explore patient experiences to generate a model of how virtual mind-body programs can support the psychosocial well-being of patients with cancer. Methods: We conducted a qualitative study among patients (aged ?18 years) who participated in a virtual mind-body program offered by a National Cancer Institute--designated Comprehensive Cancer Center during the COVID-19 pandemic. The program consisted of mind-body group therapy sessions of fitness, yoga, tai chi, dance therapy, music therapy, and meditation. Live integrative medicine clinicians held each session via Zoom videoconferencing for 30-45 minutes. In semistructured phone interviews (n=30), patients were asked about their overall impressions and perceptions of the benefits of the sessions, including impacts on stress and anxiety. Interviews were analyzed using grounded theory. Results: Among the 30 participants (average age 64.5 years, SD 9.36, range 40-80, 29 female), three major themes were identified relating to experiences in the virtual mind-body program: (1) the sessions helped the patients maintain structured routines and motivated them to adhere to healthy behaviors; (2) the sessions enhanced coping with COVID-19-related-stressors, allowing patients to ``refocus'' and ``re-energize''; and (3) the sessions allowed patients to connect, fostering social relationships during a time of isolation. These themes informed the constructs of a novel behavioral-psychological-social coping model for patients with cancer. Conclusions: Virtual mind-body programming supported patients with cancer during the COVID-19 pandemic through a behavioral-psychological-social coping model by enhancing psychological coping for external stressors, supporting adherence to motivation and health behaviors, and increasing social connection and camaraderie. These programs have potential to address the behavioral, psychological, and social challenges faced by patients with cancer during and beyond the COVID-19 pandemic. The constructs of the conceptual model proposed in this study can inform future interventions to support isolated patients with cancer. Further clinical trials are needed to confirm the specific benefits of virtual mind-body programming for the psychosocial well-being and healthy behaviors of patients with cancer. ", doi="10.2196/27384", url="https://cancer.jmir.org/2021/2/e27384", url="http://www.ncbi.nlm.nih.gov/pubmed/33882018" } @Article{info:doi/10.2196/19262, author="Ghanbari, Elaheh and Yektatalab, Shahrzad and Mehrabi, Manoosh", title="Effects of Psychoeducational Interventions Using Mobile Apps and Mobile-Based Online Group Discussions on Anxiety and Self-Esteem in Women With Breast Cancer: Randomized Controlled Trial", journal="JMIR Mhealth Uhealth", year="2021", month="May", day="18", volume="9", number="5", pages="e19262", keywords="anxiety", keywords="breast cancer", keywords="education", keywords="mobile app", keywords="self-esteem", abstract="Background: Psychoeducation has turned into an effective tool in taking care of cancer patients and improving their psychophysical symptoms and quality of life. Despite the growing use of mobile phone apps in medical settings for improving health, evidence supporting their effectiveness in the psychoeducation of patients with breast cancer is rarely available. Objective: This study was conducted to investigate the effect of psychoeducational interventions on anxiety and self-esteem in women with breast cancer using a mobile app and an online support group. Methods: An unblinded randomized controlled trial based on mobile phones was conducted in Shiraz, Iran. A research assistant recruited 82 women with nonmetastatic breast cancer aged 20 to 60 years were from clinics during a face-to-face visit at the point of care and randomly assigned to an intervention group (n=41) and a wait-list control group (n=41) through blocked randomization. The intervention group received psychoeducational interventions through a mobile phone app and participated in nurse-assisted online mobile support sessions for a total four weeks, whereas the control group was put on a waiting list. The State-Trait Anxiety Inventory (STAI) and the Rosenberg Self-Esteem Scale (RSES) were used to measure the levels of anxiety and self-esteem as the main outcomes at baseline and one week after the intervention. Results: A total of 82 patients with a mean age of 46.45 (SD 9.29) years recruited in Winter 2016 were randomly assigned to a wait-list control group (n=41) and intervention group (n=41). Five patients dropped out for different reasons. Comparing the postintervention mean scores of anxiety and its subscales using the independent t test showed statistically significant differences between the mobile psychoeducation group and controls (P<.001). The paired t test used to compare the postintervention mean scores of anxiety with its preintervention scores in the intervention group showed significant reductions in the scores of anxiety (95\% CI --17.44 to --8.90, P<.001, d=1.02) and its two subscales (state anxiety: 95\% CI --9.20 to --4.21, P<.001, d=0.88 and trait anxiety: 95\% CI --8.50 to --4.12, P<.001, d=0.94). Comparing the postintervention mean scores of self-esteem showed statistically insignificant differences between the control and intervention groups (16.87 vs 17.97, P=.24). In contrast with the controls, using the paired t test showed that the increase in the postintervention mean scores of self-esteem were statistically significant in the intervention group compared with the preintervention scores (mean difference 2.05, 95\% CI 1.28 to 2.82, P<.001). Conclusions: This study demonstrated the key role of mobile apps in decreasing anxiety and improving self-esteem in women with breast cancer through psychoeducational interventions. Similar studies with longer follow-ups are recommended that be conducted in this context. Trial Registration: Iranian Registry of Clinical Trials IRCT2015072123279N2; https://en.irct.ir/trial/19882 ", doi="10.2196/19262", url="https://mhealth.jmir.org/2021/5/e19262", url="http://www.ncbi.nlm.nih.gov/pubmed/34003138" } @Article{info:doi/10.2196/26010, author="Porter, J. Kathleen and Moon, E. Katherine and LeBaron, T. Virginia and Zoellner, M. Jamie", title="A Novel Behavioral Intervention for Rural Appalachian Cancer Survivors (weSurvive): Participatory Development and Proof-of-Concept Testing", journal="JMIR Cancer", year="2021", month="Apr", day="12", volume="7", number="2", pages="e26010", keywords="cancer survivors", keywords="quality of life", keywords="behavior change", keywords="rural", keywords="feasibility", keywords="Appalachia", abstract="Background: Addressing the modifiable health behaviors of cancer survivors is important in rural communities that are disproportionately impacted by cancer (eg, those in Central Appalachia). However, such efforts are limited, and existing interventions may not meet the needs of rural communities. Objective: This study describes the development and proof-of-concept testing of weSurvive, a behavioral intervention for rural Appalachian cancer survivors. Methods: The Obesity-Related Behavioral Intervention Trials (ORBIT) model, a systematic model for designing behavioral interventions, informed the study design. An advisory team (n=10) of community stakeholders and researchers engaged in a participatory process to identify desirable features for interventions targeting rural cancer survivors. The resulting multimodal, 13-week weSurvive intervention was delivered to 12 participants across the two cohorts. Intervention components included in-person group classes and group and individualized telehealth calls. Indicators reflecting five feasibility domains (acceptability, demand, practicality, implementation, and limited efficacy) were measured using concurrent mixed methods. Pre-post changes and effect sizes were assessed for limited efficacy data. Descriptive statistics and content analysis were used to summarize data for other domains. Results: Participants reported high program satisfaction (acceptability). Indicators of demand included enrollment of cancer survivors with various cancer types and attrition (1/12, 8\%), recruitment (12/41, 30\%), and attendance (median 62\%) rates. Dietary (7/12, 59\%) and physical activity (PA; 10/12, 83\%) behaviors were the most frequently chosen behavioral targets. However, the findings indicate that participants did not fully engage in action planning activities, including setting specific goals. Implementation indicators showed 100\% researcher fidelity to delivery and retention protocols, whereas practicality indicators highlighted participation barriers. Pre-post changes in limited efficacy outcomes regarding cancer-specific beliefs and knowledge and behavior-specific self-efficacy, intentions, and behaviors were in desired directions and demonstrated small and moderate effect sizes. Regarding dietary and PA behaviors, effect sizes for fruit and vegetable intake, snacks, dietary fat, and minutes of moderate-to-vigorous activity were small (Cohen d=0.00 to 0.32), whereas the effect sizes for change in PA were small to medium (Cohen d=0.22 to 0.45). Conclusions: weSurvive has the potential to be a feasible intervention for rural Appalachian cancer survivors. It will be refined and further tested based on the study findings, which also provide recommendations for other behavioral interventions targeting rural cancer survivors. Recommendations included adding additional recruitment and engagement strategies to increase demand and practicality as well as increasing accountability and motivation for participant involvement in self-monitoring activities through the use of technology (eg, text messaging). Furthermore, this study highlights the importance of using a systematic model (eg, the ORBIT framework) and small-scale proof-of-concept studies when adapting or developing behavioral interventions, as doing so identifies the intervention's potential for feasibility and areas that need improvement before time- and resource-intensive efficacy trials. This could support a more efficient translation into practice. ", doi="10.2196/26010", url="https://cancer.jmir.org/2021/2/e26010", url="http://www.ncbi.nlm.nih.gov/pubmed/33843597" } @Article{info:doi/10.2196/26911, author="Kataoka, Yuki and Takemura, Tomoyasu and Sasajima, Munehiko and Katoh, Naoki", title="Development and Early Feasibility of Chatbots for Educating Patients With Lung Cancer and Their Caregivers in Japan: Mixed Methods Study", journal="JMIR Cancer", year="2021", month="Mar", day="10", volume="7", number="1", pages="e26911", keywords="cancer", keywords="caregivers", keywords="chatbot", keywords="lung cancer", keywords="mixed methods approach", keywords="online health", keywords="patients", keywords="symptom management education", keywords="web-based platform", abstract="Background: Chatbots are artificial intelligence--driven programs that interact with people. The applications of this technology include the collection and delivery of information, generation of and responding to inquiries, collection of end user feedback, and the delivery of personalized health and medical information to patients through cellphone- and web-based platforms. However, no chatbots have been developed for patients with lung cancer and their caregivers. Objective: This study aimed to develop and evaluate the early feasibility of a chatbot designed to improve the knowledge of symptom management among patients with lung cancer in Japan and their caregivers. Methods: We conducted a sequential mixed methods study that included a web-based anonymized questionnaire survey administered to physicians and paramedics from June to July 2019 (phase 1). Two physicians conducted a content analysis of the questionnaire to curate frequently asked questions (FAQs; phase 2). Based on these FAQs, we developed and integrated a chatbot into a social network service (phase 3). The physicians and paramedics involved in phase I then tested this chatbot ($\alpha$ test; phase 4). Thereafter, patients with lung cancer and their caregivers tested this chatbot ($\beta$ test; phase 5). Results: We obtained 246 questions from 15 health care providers in phase 1. We curated 91 FAQs and their corresponding responses in phase 2. In total, 11 patients and 1 caregiver participated in the $\beta$ test in phase 5. The participants were asked 60 questions, 8 (13\%) of which did not match the appropriate categories. After the $\beta$ test, 7 (64\%) participants responded to the postexperimental questionnaire. The mean satisfaction score was 2.7 (SD 0.5) points out of 5. Conclusions: Medical staff providing care to patients with lung cancer can use the categories specified in this chatbot to educate patients on how they can manage their symptoms. Further studies are required to improve chatbots in terms of interaction with patients. ", doi="10.2196/26911", url="https://cancer.jmir.org/2021/1/e26911", url="http://www.ncbi.nlm.nih.gov/pubmed/33688839" } @Article{info:doi/10.2196/25404, author="Sabgul, Abdulnasir Afnan and Qattan, N. Ameerah M. and Hashmi, Rubayyat and Al-Hanawi, Khaled Mohammed", title="Husbands' Knowledge of Breast Cancer and Their Wives' Attitudes and Practices Related to Breast Cancer Screening in Saudi Arabia: Cross-sectional Online Survey", journal="J Med Internet Res", year="2021", month="Feb", day="25", volume="23", number="2", pages="e25404", keywords="attitude", keywords="breast cancer", keywords="husbands", keywords="knowledge", keywords="Saudi Arabia", keywords="screening", abstract="Background: Despite Saudi Arabia's free and well-established cancer care program, breast cancer incidence and mortality are rising. Husbands' knowledge, and wives' attitudes and practices related to breast cancer screening are not well understood in Saudi Arabia. Objective: The aim of this study was to investigate husbands' knowledge, and wives' attitudes and practices related to breast cancer screening in Saudi Arabia. Methods: This cross-sectional study collected data from 403 husbands in the holy city of Makkah through an online self-reported questionnaire over a period of 2 months, from May 6 to July 7, 2020. Tabulation, bivariate, and multiple regression analyses were the major tools used for data analysis. Multivariate logistic regressions were used to examine the association between husbands' knowledge and wives' behavior regarding breast cancer screening methods. Results: Husbands' knowledge score (a 1-point increase) was significantly associated with the wives' utilization of mammograms (adjusted odds ratio [AOR] 1.089, 95\% CI 1.024-1.159) and breast self-examination (AOR 1.177, 95\% CI 1.105-1.255). Husbands' knowledge also influenced the wives' attitudes toward learning about breast self-examination (AOR 1.138, 95\% CI 1.084-1.195). There was no significant association between husbands' knowledge and wives' utilization of clinical breast examination. However, richer husbands showed a socioeconomic gradient concerning their wives' utilization of clinical breast examinations (AOR 2.603, 95\% CI 1.269-5.341). Conclusions: Overall, husbands' knowledge of breast cancer influences wives' attitudes and practices related to breast cancer screening methods in Saudi Arabia. Thus, interventions delivered to husbands might increase breast cancer awareness and survival. ", doi="10.2196/25404", url="https://www.jmir.org/2021/2/e25404", url="http://www.ncbi.nlm.nih.gov/pubmed/33629959" } @Article{info:doi/10.2196/21851, author="Calaminus, Gabriele and Baust, Katja and Berger, Claire and Byrne, Julianne and Binder, Harald and Casagranda, Leonie and Grabow, Desiree and Grootenhuis, Martha and Kaatsch, Peter and Kaiser, Melanie and Kepak, Tomas and Kep{\'a}kov{\'a}, Kate?ina and Kremer, M. Leontien C. and Kruseova, Jarmila and Luks, Ales and Spix, Claudia and van den Berg, Marleen and van den Heuvel-Eibrink, M. Marry M. and van Dulmen-den Broeder, Eline and Kuonen, Rahel and Sommer, Grit and Kuehni, Claudia", title="Health-Related Quality of Life in European Childhood Cancer Survivors: Protocol for a Study Within PanCareLIFE", journal="JMIR Res Protoc", year="2021", month="Jan", day="25", volume="10", number="1", pages="e21851", keywords="children", keywords="adolescents", keywords="neoplasms", keywords="quality of life", keywords="health status", keywords="Europe", keywords="epidemiology", keywords="survivors of childhood cancer", abstract="Background: Survival after childhood cancer has improved to more than 80\% during the last few years, leading to an increased number of childhood cancer survivors. Cancer itself, or its treatment, may cause chronic health conditions, including somatic and mental sequelae, which may affect survivors' health-related quality of life (HRQoL). Objective: The project PanCareLIFE aims to establish a large database with comprehensive data on childhood cancer survivors from different European countries, including data on HRQoL. Within PanCareLIFE, this study aims to describe HRQoL in survivors, investigate predictors of HRQoL, and describe the association of HRQoL with hearing and female fertility impairment. This paper describes the design of the HRQoL study, the origin of data, strategies for data collection, and sampling characteristics of survivors from each contributing country. Methods: A total of 6 institutions from 5 European countries (the Czech Republic, France, Germany, the Netherlands, and Switzerland) provided data on HRQoL assessed with the Short Form 36 and on relevant predictors. The central PanCareLIFE data center aggregated the data and harmonized the variables between the institutions. Survivors were eligible if they received a diagnosis of cancer according to the 12 main groups of the International Classification of Childhood Cancer, 3rd edition, or Langerhans cell histiocytosis; were aged ?18 years at the time of diagnosis; were residents of the respective country at the time of diagnosis; had survived ?5 years after cancer diagnosis; were aged ?18 years at the time of the questionnaire survey; and did not refuse to registration in the national or local childhood cancer cohort. Results: We identified 24,993 eligible survivors. Of those, 19,268 survivors received a questionnaire and 9871 survivors participated, resulting in response rates of 9871/24,993 (39.50\%) of eligible survivors and of 9871/19,268 (51.23\%) invited survivors. Most participants were diagnosed with cancer between the ages of 10 and 14 years (3448/9871, 34.93\%) or <5 years (3201/9871, 32.43\%). The median age was 8 years. Of the 9871 participants, 3157 (31.97\%) were survivors of leukemia, 2075 (21.02\%) lymphoma, and 1356 (13.7\%) central nervous system (CNS) tumors. Most participants (9225/9871, 93.46\%) had no history of a subsequent tumor; 77.45\% (7645/9871) received chemotherapy with or without other treatments. More than half (5460/9871, 55.31\%) were aged 25 to 34 years at the time of the HRQoL study. Participating survivors differed from nonparticipants; participants were more often women, survivors of leukemia or lymphoma, and less frequently, survivors of CNS tumors than nonparticipants. Conclusions: PanCareLIFE successfully assessed HRQoL and its predictors in 9871 European survivors of childhood cancer. This large population will permit detailed investigations of HRQoL after childhood cancer, particularly the impact of hearing and female fertility impairment on HRQoL. International Registered Report Identifier (IRRID): RR1-10.2196/21851 ", doi="10.2196/21851", url="http://www.researchprotocols.org/2021/1/e21851/", url="http://www.ncbi.nlm.nih.gov/pubmed/33492237" } @Article{info:doi/10.2196/16029, author="Piil, Karin and Gyldenvang, Holm Helle and M{\o}ller, Kilberg Jeppe and Kjoelsen, Tine and Juul, Jesper and Pappot, Helle", title="Electronic Games for Facilitating Social Interaction Between Parents With Cancer and Their Children During Hospitalization: Interdisciplinary Game Development", journal="JMIR Serious Games", year="2021", month="Jan", day="21", volume="9", number="1", pages="e16029", keywords="cancer patients", keywords="children", keywords="adolescents", keywords="social relation", keywords="emotional well-being", keywords="gamification", keywords="relatives", keywords="visual design", keywords="serious games", abstract="Background: Most cancer treatments today take place in outpatient clinics; however, it might be necessary for some patients to be admitted to hospital departments due to severe side effects or complications. In such situations, support from family and social relations can be crucial for the patients' emotional well-being. Many young adolescents and children whose parents have cancer describe how they are not seen, heard, or listened to as the worried relatives they are. Within the intensive care unit, it has been recommended that early supportive interventions are tailored to include children of the intensive care patient; a similar approach might be relevant in the oncological setting. To our knowledge, no studies have explored how to involve young relatives who are visiting their parent at an oncological department. Recently, a framework for developing theory-driven, evidence-based serious games for health has been suggested. Such a process would include stakeholders from various disciplines, who only work toward one specific solution. However, it is possible that bringing together different disciplines, such as design, art, and health care, would allow a broader perspective, resulting in improved solutions. Objective: This study aims to develop tools to enhance the social interaction between a parent with cancer and their child when the child visits the parent in the hospital. Methods: In total, 4 groups of design students within the Visual Design program were tasked with developing games addressing the objective of strengthening relations in situ during treatment. To support their work, the applied methods included professional lectures, user studies, and visual communication (phase I); interviews with the relevant clinicians at the hospital (phase II), co-creative workshops with feedback (phase III), and evaluation sessions with selected populations (phase IV). The activities in the 4 phases were predefined. This modified user design had the child (aged 4-18 years) of a parent with cancer as its primary user. Results: Overall, 4 different games were designed based on the same information. All games had the ability to make adults with cancer and their children interact on a common electronic platform with a joint goal. However, the interaction, theme, and graphical expression differed between the games, suggesting that this is a wide and fertile field to explore. Conclusions: Playing a game can be an efficient way to create social interaction between a parent with cancer and a child or an adolescent, potentially improving the difficult social and psychological relations between them. The study showed that the development of serious games can be highly dependent on the designers involved and the processes used. This must be considered when a hospital aims to develop multiple games for different purposes. ", doi="10.2196/16029", url="http://games.jmir.org/2021/1/e16029/", url="http://www.ncbi.nlm.nih.gov/pubmed/33475523" } @Article{info:doi/10.2196/16785, author="Mikolasek, Michael and Witt, Margitta Claudia and Barth, J{\"u}rgen", title="Effects and Implementation of a Mindfulness and Relaxation App for Patients With Cancer: Mixed Methods Feasibility Study", journal="JMIR Cancer", year="2021", month="Jan", day="13", volume="7", number="1", pages="e16785", keywords="mobile app", keywords="mobile phone", keywords="mindfulness", keywords="relaxation", keywords="cancer", keywords="qualitative research", keywords="implementation science", keywords="mHealth", keywords="evaluation study", keywords="patient compliance", keywords="patient participation", keywords="patient preference", abstract="Background: Cancer diagnosis and cancer treatment can cause high levels of distress, which is often not sufficiently addressed in standard medical care. Therefore, a variety of supportive nonpharmacological treatments have been suggested to reduce distress in patients with cancer. However, not all patients use these interventions because of limited access or lack of awareness. To overcome these barriers, mobile health may be a promising way to deliver the respective supportive treatments. Objective: The aim of this study is to evaluate the effects and implementation of a mindfulness and relaxation app intervention for patients with cancer as well as patients' adherence to such an intervention. Methods: In this observational feasibility study with a mixed methods approach, patients with cancer were recruited through the web and through hospitals in Switzerland. All enrolled patients received access to a mindfulness and relaxation app. Patients completed self-reported outcomes (general health, health-related quality of life, anxiety, depression, distress, mindfulness, and fear of progression) at baseline and at weeks 4, 10, and 20. The frequency of app exercise usage was gathered directly through the app to assess the adherence of patients. In addition, we conducted interviews with 5 health professionals for their thoughts on the implementation of the app intervention in standard medical care. We analyzed patients' self-reported outcomes using linear mixed models (LMMs) and qualitative data with content analysis. Results: A total of 100 patients with cancer (74 female) with a mean age of 53.2 years (SD 11.6) participated in the study, of which 25 patients used the app regularly until week 20. LMM analyses revealed improvements in anxiety (P=.04), distress (P<.001), fatigue (P=.01), sleep disturbance (P=.02), quality of life (P=.03), and mindfulness (P<.001) over the course of 20 weeks. Further LMM analyses revealed a larger improvement in distress (P<.001), a moderate improvement in anxiety (P=.001), and a larger improvement in depression (P=.03) in patients with high levels of symptoms at baseline in the respective domains. The interviews revealed that the health professionals perceived the app as a helpful addition to standard care. They also made suggestions for improvements, which could facilitate the implementation of and adherence to such an app. Conclusions: This study indicates that a mindfulness and relaxation app for patients with cancer can be a feasible and effective way to deliver a self-care intervention, especially for highly distressed patients. Future studies should investigate if the appeal of the app can be increased with more content, and the effectiveness of such an intervention needs to be tested in a randomized controlled trial. ", doi="10.2196/16785", url="https://cancer.jmir.org/2021/1/e16785", url="http://www.ncbi.nlm.nih.gov/pubmed/33439132" } @Article{info:doi/10.2196/21453, author="Leung, W. Yvonne and Wouterloot, Elise and Adikari, Achini and Hirst, Graeme and de Silva, Daswin and Wong, Jiahui and Bender, L. Jacqueline and Gancarz, Mathew and Gratzer, David and Alahakoon, Damminda and Esplen, Jane Mary", title="Natural Language Processing--Based Virtual Cofacilitator for Online Cancer Support Groups: Protocol for an Algorithm Development and Validation Study", journal="JMIR Res Protoc", year="2021", month="Jan", day="7", volume="10", number="1", pages="e21453", keywords="artificial intelligence", keywords="cancer", keywords="online support groups", keywords="emotional distress", keywords="natural language processing", keywords="participant engagement", abstract="Background: Cancer and its treatment can significantly impact the short- and long-term psychological well-being of patients and families. Emotional distress and depressive symptomatology are often associated with poor treatment adherence, reduced quality of life, and higher mortality. Cancer support groups, especially those led by health care professionals, provide a safe place for participants to discuss fear, normalize stress reactions, share solidarity, and learn about effective strategies to build resilience and enhance coping. However, in-person support groups may not always be accessible to individuals; geographic distance is one of the barriers for access, and compromised physical condition (eg, fatigue, pain) is another. Emerging evidence supports the effectiveness of online support groups in reducing access barriers. Text-based and professional-led online support groups have been offered by Cancer Chat Canada. Participants join the group discussion using text in real time. However, therapist leaders report some challenges leading text-based online support groups in the absence of visual cues, particularly in tracking participant distress. With multiple participants typing at the same time, the nuances of the text messages or red flags for distress can sometimes be missed. Recent advances in artificial intelligence such as deep learning--based natural language processing offer potential solutions. This technology can be used to analyze online support group text data to track participants' expressed emotional distress, including fear, sadness, and hopelessness. Artificial intelligence allows session activities to be monitored in real time and alerts the therapist to participant disengagement. Objective: We aim to develop and evaluate an artificial intelligence--based cofacilitator prototype to track and monitor online support group participants' distress through real-time analysis of text-based messages posted during synchronous sessions. Methods: An artificial intelligence--based cofacilitator will be developed to identify participants who are at-risk for increased emotional distress and track participant engagement and in-session group cohesion levels, providing real-time alerts for therapist to follow-up; generate postsession participant profiles that contain discussion content keywords and emotion profiles for each session; and automatically suggest tailored resources to participants according to their needs. The study is designed to be conducted in 4 phases consisting of (1) development based on a subset of data and an existing natural language processing framework, (2) performance evaluation using human scoring, (3) beta testing, and (4) user experience evaluation. Results: This study received ethics approval in August 2019. Phase 1, development of an artificial intelligence--based cofacilitator, was completed in January 2020. As of December 2020, phase 2 is underway. The study is expected to be completed by September 2021. Conclusions: An artificial intelligence--based cofacilitator offers a promising new mode of delivery of person-centered online support groups tailored to individual needs. International Registered Report Identifier (IRRID): DERR1-10.2196/21453 ", doi="10.2196/21453", url="https://www.researchprotocols.org/2021/1/e21453", url="http://www.ncbi.nlm.nih.gov/pubmed/33410754" } @Article{info:doi/10.2196/18655, author="Schmalz, Oliver and Jacob, Christine and Ammann, Johannes and Liss, Blasius and Iivanainen, Sanna and Kammermann, Manuel and Koivunen, Jussi and Klein, Alexander and Popescu, Andrei Razvan", title="Digital Monitoring and Management of Patients With Advanced or Metastatic Non-Small Cell Lung Cancer Treated With Cancer Immunotherapy and Its Impact on Quality of Clinical Care: Interview and Survey Study Among Health Care Professionals and Patients", journal="J Med Internet Res", year="2020", month="Dec", day="21", volume="22", number="12", pages="e18655", keywords="advanced or metastatic non-small cell lung cancer", keywords="cancer immunotherapy", keywords="digital patient monitoring", keywords="drug- and indication-specific cancer immunotherapy module", keywords="eHealth", keywords="mHealth", keywords="quality of patient care", keywords="patient-reported outcomes", keywords="real-time symptom reporting", keywords="user experience", abstract="Background: Cancer immunotherapy (CIT), as a monotherapy or in combination with chemotherapy, has been shown to extend overall survival in patients with locally advanced or metastatic non-small cell lung cancer (NSCLC). However, patients experience treatment-related symptoms that they are required to recall between hospital visits. Digital patient monitoring and management (DPMM) tools may improve clinical practice by allowing real-time symptom reporting. Objective: This proof-of-concept pilot study assessed patient and health care professional (HCP) adoption of our DPMM tool, which was designed specifically for patients with advanced or metastatic NSCLC treated with CIT, and the tool's impact on clinical care. Methods: Four advisory boards were assembled in order to co-develop a drug- and indication-specific CIT (CIT+) module, based on a generic CIT DPMM tool from Kaiku Health, Helsinki, Finland. A total of 45 patients treated with second-line single-agent CIT (ie, atezolizumab or otherwise) for advanced or metastatic NSCLC, as well as HCPs, whose exact number was decided by the clinics, were recruited from 10 clinics in Germany, Finland, and Switzerland between February and May 2019. All clinics were provided with the Kaiku Health generic CIT DPMM tool, including our CIT+ module. Data on user experience, overall satisfaction, and impact of the tool on clinical practice were collected using anonymized surveys---answers ranged from 1 (low agreement) to 5 (high agreement)---and HCP interviews; surveys and interviews consisted of closed-ended Likert scales and open-ended questions, respectively. The first survey was conducted after 2 months of DPMM use, and a second survey and HCP interviews were conducted at study end (ie, after ?3 months of DPMM use); only a subgroup of HCPs from each clinic responded to the surveys and interviews. Survey data were analyzed quantitatively; interviews were recorded, transcribed verbatim, and translated into English, where applicable, for coding and qualitative thematic analysis. Results: Among interim survey respondents (N=51: 13 [25\%] nurses, 11 [22\%] physicians, and 27 [53\%] patients), mean rankings of the tool's seven usability attributes ranged from 3.2 to 4.4 (nurses), 3.7 to 4.5 (physicians), and 3.7 to 4.2 (patients). At the end-of-study survey (N=48: 19 [40\%] nurses, 8 [17\%] physicians, and 21 [44\%] patients), most respondents agreed that the tool facilitated more efficient and focused discussions between patients and HCPs (nurses and patients: mean rating 4.2, SD 0.8; physicians: mean rating 4.4, SD 0.8) and allowed HCPs to tailor discussions with patients (mean rating 4.35, SD 0.65). The standalone tool was well integrated into HCP daily clinical workflow (mean rating 3.80, SD 0.75), enabled workflow optimization between physicians and nurses (mean rating 3.75, SD 0.80), and saved time by decreasing phone consultations (mean rating 3.75, SD 1.00) and patient visits (mean rating 3.45, SD 1.20). Workload was the most common challenge of tool use among respondents (12/19, 63\%). Conclusions: Our results demonstrate high user satisfaction and acceptance of DPMM tools by HCPs and patients, and highlight the improvements to clinical care in patients with advanced or metastatic NSCLC treated with CIT monotherapy. However, further integration of the tool into the clinical information technology data flow is required. Future studies or registries using our DPMM tool may provide insights into significant effects on patient quality of life or health-economic benefits. ", doi="10.2196/18655", url="http://www.jmir.org/2020/12/e18655/", url="http://www.ncbi.nlm.nih.gov/pubmed/33346738" } @Article{info:doi/10.2196/18767, author="Lee, Jooyun and Park, Hyeoun-Ae and Park, Ki Seul and Song, Tae-Min", title="Using Social Media Data to Understand Consumers' Information Needs and Emotions Regarding Cancer: Ontology-Based Data Analysis Study", journal="J Med Internet Res", year="2020", month="Dec", day="7", volume="22", number="12", pages="e18767", keywords="social media", keywords="ontology", keywords="cancer", keywords="health information needs", keywords="cancer information", keywords="emotion", abstract="Background: Analysis of posts on social media is effective in investigating health information needs for disease management and identifying people's emotional status related to disease. An ontology is needed for semantic analysis of social media data. Objective: This study was performed to develop a cancer ontology with terminology containing consumer terms and to analyze social media data to identify health information needs and emotions related to cancer. Methods: A cancer ontology was developed using social media data, collected with a crawler, from online communities and blogs between January 1, 2014 and June 30, 2017 in South Korea. The relative frequencies of posts containing ontology concepts were counted and compared by cancer type. Results: The ontology had 9 superclasses, 213 class concepts, and 4061 synonyms. Ontology-driven natural language processing was performed on the text from 754,744 cancer-related posts. Colon, breast, stomach, cervical, lung, liver, pancreatic, and prostate cancer; brain tumors; and leukemia appeared most in these posts. At the superclass level, risk factor was the most frequent, followed by emotions, symptoms, treatments, and dealing with cancer. Conclusions: Information needs and emotions differed according to cancer type. The observations of this study could be used to provide tailored information to consumers according to cancer type and care process. Attention should be paid to provision of cancer-related information to not only patients but also their families and the general public seeking information on cancer. ", doi="10.2196/18767", url="http://www.jmir.org/2020/12/e18767/", url="http://www.ncbi.nlm.nih.gov/pubmed/33284127" } @Article{info:doi/10.2196/17771, author="Garg, Ria and Rebi{\'c}, Nevena and De Vera, A. Mary", title="Information Needs About Cancer Treatment, Fertility, and Pregnancy: Qualitative Descriptive Study of Reddit Threads", journal="JMIR Cancer", year="2020", month="Dec", day="2", volume="6", number="2", pages="e17771", keywords="cancer treatment", keywords="health information", keywords="oncofertility", keywords="fertility", keywords="pregnancy", keywords="reproduction", keywords="social support", abstract="Background: A reproductive health implication of the increasing incidence of cancer among women is the impact of cancer treatment on fertility. Objective: As patients are increasingly using the internet, particularly online forums, to seek and share experiences, our objective was to understand information needs about cancer treatment, fertility, and pregnancy of women with cancer as well as their caregivers. Methods: We searched threads (original posts and responses) on four subreddit sites of Reddit (``r/Cancer,'' ``r/TryingForABaby,'' ``r/BabyBumps,'' and ``r/Infertility'') over a 5?year period between February 4th, 2014 and February 4th, 2019. Threads with original posts involving a lived experience or question regarding cancer treatment and female fertility and/or pregnancy or parenting/having children from the perspective of either patient or caregiver were included in our analysis. We analyzed threads using thematic analysis. Results: From 963 Reddit threads identified, 69 were analyzed, including 56 with original posts by women with cancer and 13 with original posts by caregivers. From threads made by patients, we identified themes on becoming a part of an online community, impacts of cancer treatment and fertility concerns on self and social relationships, making family planning decisions, and experiences with medical team. We also identified a theme on the impact of cancer treatment and fertility concerns on caregivers. Conclusions: Reddit provided a rich pool of data for analyzing the information needs of women facing cancer. Our findings demonstrate the far-reaching impacts of cancer treatment and fertility on physical, mental, and psychosocial health for both patients and their caregivers. ", doi="10.2196/17771", url="http://cancer.jmir.org/2020/2/e17771/", url="http://www.ncbi.nlm.nih.gov/pubmed/33263547" } @Article{info:doi/10.2196/20709, author="Matis, Juraj and Svetlak, Miroslav and Slezackova, Alena and Svoboda, Marek and {\vS}umec, Rastislav", title="Mindfulness-Based Programs for Patients With Cancer via eHealth and Mobile Health: Systematic Review and Synthesis of Quantitative Research", journal="J Med Internet Res", year="2020", month="Nov", day="16", volume="22", number="11", pages="e20709", keywords="eHealth", keywords="mHealth", keywords="mindfulness", keywords="cancer", keywords="systematic review", keywords="mobile phone", abstract="Background: eHealth mindfulness-based programs (eMBPs) are on the rise in complex oncology and palliative care. However, we are still at the beginning of answering the questions of how effective eMBPs are and for whom, and what kinds of delivery modes are the most efficient. Objective: This systematic review aims to examine the feasibility and efficacy of eMBPs in improving the mental health and well-being of patients with cancer, to describe intervention characteristics and delivery modes of these programs, and to summarize the results of the included studies in terms of moderators, mediators, and predictors of efficacy, adherence, and attrition. Methods: In total, 4 databases (PubMed, PsycINFO, Scopus, and Web of Knowledge) were searched using relevant search terms (eg, mindfulness, program, eHealth, neoplasm) and their variations. No restrictions were imposed on language or publication type. The results of the efficacy of eMBPs were synthesized through the summarizing effect estimates method. Results: A total of 29 published papers describing 24 original studies were included in this review. In general, the results indicate that eMBPs have the potential to reduce the levels of stress, anxiety, depression, fatigue, sleep problems, and pain, and improve the levels of mindfulness, posttraumatic growth, and some parameters of general health. The largest median of Cohen d effect sizes were observed in reducing anxiety and depression (within-subject: median ?0.38, IQR ?0.62 to ?0.27; between-group:median ?0.42, IQR ?0.58 to ?0.22) and facilitating posttraumatic growth (within-subject: median 0.42, IQR 0.35 to 0.48;between-group: median 0.32, IQR 0.22 to 0.39). The efficacy of eMBP may be comparable with that of parallel, face-to-faceMBPs in some cases. All studies that evaluated the feasibility of eMBPs reported that they are feasible for patients with cancer.Potential moderators, mediators, and predictors of the efficacy, attrition, and adherence of eMBPs are discussed. Conclusions: Although the effects of the reviewed studies were highly heterogeneous, the review provides evidence that eMBPs are an appropriate way for mindfulness practice to be delivered to patients with cancer. Thus far, existing eMBPs have mostly attempted to convert proven face-to-face mindfulness programs to the eHealth mode. They have not yet fully exploited the potential of eHealth technology. ", doi="10.2196/20709", url="http://www.jmir.org/2020/11/e20709/", url="http://www.ncbi.nlm.nih.gov/pubmed/33196452" } @Article{info:doi/10.2196/18303, author="Sanders, Remco and Araujo, B. Theo and Vliegenthart, Rens and van Eenbergen, C. Mies and van Weert, M. Julia C. and Linn, J. Annemiek", title="Patients' Convergence of Mass and Interpersonal Communication on an Online Forum: Hybrid Methods Analysis", journal="J Med Internet Res", year="2020", month="Oct", day="19", volume="22", number="10", pages="e18303", keywords="convergence", keywords="online health seeking", keywords="supervised machine learning", keywords="patient needs", keywords="machine learning", keywords="online forums", keywords="patients", keywords="media", abstract="Background: Patients are increasingly taking an active role in their health. In doing so, they combine both mass and interpersonal media to gratify their cognitive and affective needs (ie, convergence). Owing to methodological challenges when studying convergence, a detailed view of how patients are using different types of media for needs fulfillment is lacking. Objective: The aim of this study was to obtain insight into the frequency of reported convergence, how convergence affects what posters write online, motives for posting, and the needs posters are trying to fulfill. Methods: Using a hybrid method of content analysis and supervised machine learning, this study used naturally available data to fill this research gap. We analyzed opening posts (N=1708) of an online forum targeting cancer patients and their relatives (Kanker.nl). Results: Nearly one-third of the forum opening posts contained signs of convergence in mass or interpersonal media. Posts containing mass media references disclosed less personal information and were more geared toward community enhancement and sharing experiences compared to posts without convergence. Furthermore, compared to posts without signs of convergence, posts that included interpersonal media references disclosed more personal information, and posters were more likely to ask for the experiences of fellow users to fulfill their needs. Within posts containing signs of convergence, posts including interpersonal media references reported fewer shortages of information, disclosed more information about the disease, and were more active in seeking other posters' experiences compared to posts containing mass media references. Conclusions: The current study highlights the intertwining of media platforms for patients. The insights of this study can be used to adapt the health care system toward a new type of health information--seeking behavior in which one medium is not trusted to fulfill all needs. Instead, providers should incorporate the intertwinement of sources by providing patients with reliable websites and forums through which they can fulfill their needs. ", doi="10.2196/18303", url="https://www.jmir.org/2020/10/e18303", url="http://www.ncbi.nlm.nih.gov/pubmed/33074160" } @Article{info:doi/10.2196/22005, author="Feliciano, T. Josemari and Salmi, Liz and Blotner, Charlie and Hayden, Adam and Nduom, K. Edjah and Kwan, M. Bethany and Katz, S. Matthew and Claus, B. Elizabeth", title="Brain Tumor Discussions on Twitter (\#BTSM): Social Network Analysis", journal="J Med Internet Res", year="2020", month="Oct", day="8", volume="22", number="10", pages="e22005", keywords="brain tumors", keywords="social media", keywords="health care", keywords="patient support", keywords="network analysis", abstract="Background: The Brain Tumor Social Media (\#BTSM) Twitter hashtag was founded in February 2012 as a disease-specific hashtag for patients with brain tumor. Objective: To understand \#BTSM's role as a patient support system, we describe user descriptors, growth, interaction, and content sharing. Methods: We analyzed all tweets containing \#BTSM from 2012 to 2018 using the Symplur Signals platform to obtain data and to describe Symplur-defined user categories, tweet content, and trends in use over time. We created a network plot with all publicly available retweets involving \#BTSM in 2018 to visualize key stakeholders and their connections to other users. Results: From 2012 to 2018, 59,764 unique users participated in \#BTSM, amassing 298,904 tweets. The yearly volume of \#BTSM tweets increased by 264.57\% from 16,394 in 2012 to 43,373 in 2018 with \#BTSM constantly trending in the top 15 list of disease hashtags, as well the top 15 list of tweet chats. Patient advocates generated the most \#BTSM tweets (33.13\%), while advocacy groups, caregivers, doctors, and researchers generated 7.01\%, 4.63\%, 3.86\%, and 3.37\%, respectively. Physician use, although still low, has increased over time. The 2018 network plot of retweets including \#BTSM identifies a number of key stakeholders from the patient advocate, patient organization, and medical researcher domains and reveals the extent of their reach to other users. Conclusions: From its start in 2012, \#BTSM has grown exponentially over time. We believe its growth suggests its potential as a global source of brain tumor information on Twitter for patients, advocates, patient organizations as well as health care professionals and researchers. ", doi="10.2196/22005", url="http://www.jmir.org/2020/10/e22005/", url="http://www.ncbi.nlm.nih.gov/pubmed/33030435" } @Article{info:doi/10.2196/17526, author="Cillessen, Linda and van de Ven, OM Monique and Compen, R. F{\'e}lix and Bisseling, M. Else and van der Lee, L. Marije and Speckens, EM Anne", title="Predictors and Effects of Usage of an Online Mindfulness Intervention for Distressed Cancer Patients: Usability Study", journal="J Med Internet Res", year="2020", month="Oct", day="2", volume="22", number="10", pages="e17526", keywords="internet intervention", keywords="eHealth", keywords="mindfulness", keywords="mindfulness-based cognitive therapy", keywords="usage", keywords="log data", keywords="uptake", keywords="adherence", keywords="cancer", keywords="oncology", abstract="Background: One in three cancer patients experience high psychological distress. Mindfulness-based interventions are effective in reducing psychological distress in this patient group. However, these interventions lack availability and flexibility, which may compromise participation in the intervention for cancer patients experiencing late symptoms like fatigue or pain. Therefore, mindfulness-based interventions are increasingly offered via the internet. However, little is known about the usage of these online mindfulness-based interventions. Objective: The aim of this study was to (1) predict uptake of and adherence to online mindfulness-based cognitive therapy (eMBCT) using baseline patient characteristics (demographic, cancer-related, personality, and psychological variables) and (2) examine the relations between adherence and treatment outcomes in eMBCT for cancer patients. Methods: A total of 125 cancer patients were assigned to eMBCT in a parent randomized controlled trial comparing MBCT and eMBCT with treatment as usual in distressed cancer patients. Various usage measures of eMBCT were automatically tracked within the online program. Based on activity of use, participants were classified as nonusers, minimal users, low users, and intended users. Questionnaires were used to assess baseline characteristics (preintervention) and outcomes (pre- and postintervention). To answer the research questions, data were analyzed with t tests, $\chi$2 tests, and linear regression models. Results: Based on weekly activity, participants were classified as nonusers (n=17, 13.6\%), who completed no exercises in MBCT; minimal users (n=31, 24.8\%), who completed at least one exercise of one to three sessions; low users (n=12, 9.6\%), who completed at least one exercise of four to seven sessions; and intended users (n=65, 52.0\%), who completed at least one exercise of eight to nine sessions. Nonusers had more fear of cancer recurrence at baseline than users (uptake), and intended users were more conscientious than minimal and low users (adherence). Intended users reported a larger reduction in psychological distress and more improvement of positive mental health (ie, emotional, psychological, and social well-being) after the intervention than other participants. Conclusions: This study showed that adherence was related to improved patient outcomes. Patients with strong fear of recurrence or low levels of conscientiousness should receive extra attention, as they are less likely to respectively start or complete eMBCT. Future research may focus on the development of flexible and adaptive eMBCT programs to fit individual needs. ", doi="10.2196/17526", url="https://www.jmir.org/2020/10/e17526", url="http://www.ncbi.nlm.nih.gov/pubmed/33006567" } @Article{info:doi/10.2196/18946, author="Cheng, Chao and Ho, Hung Rainbow Tin and Guo, Yan and Zhu, Mengting and Yang, Weixiong and Li, Yiran and Liu, Zhenguo and Zhuo, Shuyu and Liang, Qi and Chen, Zhenghong and Zeng, Yu and Yang, Jiali and Zhang, Zhanfei and Zhang, Xu and Monroe-Wise, Aliza and Yeung, Sai-Ching", title="Development and Feasibility of a Mobile Health--Supported Comprehensive Intervention Model (CIMmH) for Improving the Quality of Life of Patients With Esophageal Cancer After Esophagectomy: Prospective, Single-Arm, Nonrandomized Pilot Study", journal="J Med Internet Res", year="2020", month="Aug", day="18", volume="22", number="8", pages="e18946", keywords="esophageal cancer", keywords="quality of life", keywords="nutrition", keywords="physical exercise", keywords="psychological support", keywords="mobile health", keywords="mHealth", abstract="Background: Patients with esophageal cancer often experience clinically relevant deterioration of quality of life (QOL) after esophagectomy owing to malnutrition, lack of physical exercise, and psychological symptoms. Objective: This study aimed to evaluate the feasibility, safety, and efficacy of a comprehensive intervention model using a mobile health system (CIMmH) in patients with esophageal cancer after esophagectomy. Methods: Twenty patients with esophageal cancer undergoing the modified McKeown surgical procedure were invited to join the CIMmH program with both online and offline components for 12 weeks. The participants were assessed before surgery and again at 1 and 3 months after esophagectomy. QOL, depressive symptoms, anxiety, stress, nutrition, and physical fitness were measured. Results: Of the 20 patients, 16 (80\%) completed the program. One month after esophagectomy, patients showed significant deterioration in overall QOL (P=.02), eating (P=.005), reflux (P=.04), and trouble with talking (P<.001). At the 3-month follow-up, except for pain (P=.02), difficulty with eating (P=.03), dry mouth (P=.04), and trouble with talking (P=.003), all other QOL dimensions returned to the preoperative level. There were significant reductions in weight (P<.001) and BMI (P=.02) throughout the study, and no significant changes were observed for physical fitness measured by change in the 6-minute walk distance between baseline and the 1-month follow-up (P=.22) or between baseline and the 3-month follow-up (P=.52). Depressive symptoms significantly increased 1 month after surgery (P<.001), while other psychological measures did not show relevant changes. Although there were declines in many measures 1 month after surgery, these were much improved at the 3-month follow-up, and the recovery was more profound and faster than with traditional rehabilitation programs. Conclusions: The CIMmH was feasible and safe and demonstrated encouraging efficacy testing with a control group for enhancing recovery after surgery among patients with esophageal cancer in China. Trial Registration: Chinese Clinical Trial Registry (ChiCTR-IPR-1800019900); http://www.chictr.org.cn/showprojen.aspx?proj=32811. ", doi="10.2196/18946", url="http://www.jmir.org/2020/8/e18946/", url="http://www.ncbi.nlm.nih.gov/pubmed/32808933" } @Article{info:doi/10.2196/17907, author="Lu, Hongru and Xie, Juan and Gerido, Hammond Lynette and Cheng, Ying and Chen, Ya and Sun, Lizhu", title="Information Needs of Breast Cancer Patients: Theory-Generating Meta-Synthesis", journal="J Med Internet Res", year="2020", month="Jul", day="28", volume="22", number="7", pages="e17907", keywords="breast cancer patients", keywords="information needs", keywords="incentives", keywords="moderating variables", keywords="meta-synthesis", abstract="Background: Breast cancer has become one of the most frequently diagnosed carcinomas and the leading cause of cancer deaths. The substantial growth in the number of breast cancer patients has put great pressure on health services. Meanwhile, the information patients need has increased and become more complicated. Therefore, a comprehensive and in-depth understanding of their information needs is urgently needed to improve the quality of health care. However, previous studies related to the information needs of breast cancer patients have focused on different perspectives and have only contributed to individual results. A systematic review and synthesis of breast cancer patients' information needs is critical. Objective: This paper aims to systematically identify, evaluate, and synthesize existing primary qualitative research on the information needs of breast cancer patients. Methods: Web of Science, EBSCO, Scopus, ProQuest, PubMed, PsycINFO, The Cochrane Library, the Cumulative Index to Nursing and Allied Health Literature were searched on February 12 and July 9, 2019, to collect relevant studies. A Google Scholar search, interpersonal network recommendations, and reference chaining were also conducted. Eligible studies included qualitative or mixed-methods studies focusing on the information needs (across the cancer continuum) of breast cancer patients or their social networks. Subsequently, a Critical Appraisals Skills Programme checklist was used to assess the quality of included research. The results, findings, and discussions were extracted. Data analysis was guided by the theory-generating meta-synthesis and grounded theory approach. Results: Three themes, 19 categories, and 55 concepts emerged: (1) incentives (physical abnormality, inquiry from others, subjective norm, and problems during appointments); (2) types of information needs (prevention, etiology, diagnosis, clinical manifestation, treatment, prognosis, impact and resumption of normal life, scientific research, and social assistance); (3) moderating variables (attitudes, health literacy, demographic characteristics, disease status, as well as political and cultural environment). The studies revealed that the information needs of breast cancer patients were triggered by different incentives. Subsequently, the patients sought a variety of information among different stages of the cancer journey. Five types of variables were also found to moderate the formation of information needs. Conclusions: This study contributes to a thorough model of information needs among breast cancer patients and provides practical suggestions for health and information professionals. ", doi="10.2196/17907", url="https://www.jmir.org/2020/7/e17907", url="http://www.ncbi.nlm.nih.gov/pubmed/32720899" } @Article{info:doi/10.2196/19364, author="Huberty, Jennifer and Eckert, Ryan and Puzia, Megan and Laird, Breanne and Larkey, Linda and Mesa, Ruben", title="A Novel Educational Control Group Mobile App for Meditation Interventions: Single-Group Feasibility Trial", journal="JMIR Form Res", year="2020", month="Jul", day="21", volume="4", number="7", pages="e19364", keywords="feasibility", keywords="smartphone", keywords="mHealth", keywords="digital health", keywords="cancer", keywords="beta test", abstract="Background: Smartphone ownership is becoming ubiquitous among US adults, making the delivery of health interventions via a mobile app (ie, mobile health [mHealth]) attractive to many researchers and clinicians. Meditation interventions have become popular and have been delivered to study participants via mobile apps to improve a range of health outcomes in both healthy adults and those with chronic diseases. However, these meditation mHealth interventions have been limited by a lack of high-quality control groups. More specifically, these studies have lacked consistency in their use of active, time-matched, and attention-matched control groups. Objective: The purpose of this study is to beta test a novel health education podcast control condition delivered via a smartphone app that would be a strong comparator to be used in future studies of app-based meditation interventions. Methods: Patients with myeloproliferative neoplasm (MPN) cancer were recruited nationally. Upon enrollment, participants were informed to download the investigator-developed health education podcast app onto their mobile phone and listen to {\textasciitilde}60 min/week of cancer-related educational podcasts for 12 weeks. The benchmarks for feasibility included ?70\% of participants completing ?70\% of the prescribed 60 min/week of podcasts, ?70\% of participants reporting that they were satisfied with the intervention, and ?70\% of participants reporting that they enjoyed the health education podcasts. Results: A total of 96 patients with MPN were enrolled in the study; however, 19 never began the intervention. Of the 77 patients who participated in the intervention, 39 completed the entire study (ie, sustained participation through the follow-up period). Participation averaged 103.2 (SD 29.5) min/week. For 83.3\% (10/12) of the weeks, at least 70\% of participants completed at least 70\% of their total prescribed use. Almost half of participants reported that they enjoyed the health education podcasts (19/39, 48.7\%) and were satisfied with the intervention (17/39, 43.6\%). There were no significant changes in cancer-related outcomes from baseline to postintervention. Conclusions: A 12-week, health education podcast mobile app was demanded but not accepted in a sample of patients with cancer. Using the mobile app was not associated with significant changes in cancer-related symptoms. Based on findings from this study, a health education podcast mobile app may be a feasible option as a time- and attention-matched control group for efficacy trials with more extensive formative research for the content of the podcasts and its acceptability by the specific population. Trial Registration: ClinicalTrials.gov NCT03907774; https://clinicaltrials.gov/ct2/show/NCT03907774 ", doi="10.2196/19364", url="http://formative.jmir.org/2020/7/e19364/", url="http://www.ncbi.nlm.nih.gov/pubmed/32706719" } @Article{info:doi/10.2196/19734, author="Lally, M. Robin and Kupzyk, Kevin and Gallo, Steve and Berry, Donna", title="Use of an Unguided, Web-Based Distress Self-Management Program After Breast Cancer Diagnosis: Sub-Analysis of CaringGuidance Pilot Study", journal="J Med Internet Res", year="2020", month="Jul", day="6", volume="22", number="7", pages="e19734", keywords="eHealth", keywords="psychoeducation", keywords="supportive oncology", keywords="distress", keywords="self-management", keywords="oncology", keywords="breast cancer", abstract="Background: Unguided, web-based psychoeducational interventions are gaining interest as a way to reach patients while reducing pressure on clinical resources. However, there has been little research on how patients with cancer use these interventions. Objective: The objective of this analysis was to evaluate how women newly diagnosed with breast cancer used the unguided web-based, psychoeducational distress self-management program CaringGuidance After Breast Cancer Diagnosis while enrolled in a pilot feasibility study. Methods: Women with stage 0 to II breast cancer diagnosed within the prior three months were recruited from clinics primarily in the Northeastern United States for participation in a 12-week pilot study of CaringGuidance plus usual care versus usual care alone. Usage prompts included sets of emails sent weekly for 12 weeks; standardized congratulatory emails after every two hours of program use, and informative emails for each cognitive-behavioral exercise. Individual user activity on the site was automatically tracked by an analytics system and recorded directly in the CaringGuidance database. Results: Complete usage data were available for 54 subjects. Ninety-eight percent of the intervention group logged into CaringGuidance independently at least once. Thirty-eight (70\%) logged in during all three months, 15 (28\%) were intermittent users, and one (2\%) was a non-user. Users (n=53) averaged 15.6 (SD 9.85) logins. Mean logins were greatest in month 1 (7.26, SD 4.02) and declined in months 2 (4.32, SD 3.66) and month 3 (4.02, SD 3.82). Eleven (21\%) used CaringGuidance with both the frequency and activity level intended at study outset, 9 (17\%) exceeded intended frequency and activity (high-high users), and 10 (19\%) were below expected usage on both login frequency and activity (low-low users). Low-low users and high-high users differed significantly (P<.001) in the total number of views and unique views of all program components. Change in depressive symptoms and the number of sessions (r=.351) and logins (r=.348) between study months 1 and 2 were significantly correlated (P=.018, .019). Higher baseline distress was associated with more unique views of program resources (r=.281, P=.043). Change in intrusive/avoidant thoughts from baseline to month 3, and the number of users' unique exercise views were negatively correlated (r=--.319, P=.035) so that more unique exercise views, equated with greater decline in intrusive/avoidant thoughts from baseline to month 3. Conclusions: These findings favor the hypothesis that the key ingredient is not the amount of program use, but each user's self-selected activity within the program. More research is needed on the ideal ways to maintain use, and capture and define engagement and enactment of behaviors by people with cancer accessing unguided, self-management web-based programs. ", doi="10.2196/19734", url="https://www.jmir.org/2020/7/e19734", url="http://www.ncbi.nlm.nih.gov/pubmed/32628117" } @Article{info:doi/10.2196/16902, author="Ure, Cathy and Cooper-Ryan, Mary Anna and Condie, Jenna and Galpin, Adam", title="Exploring Strategies for Using Social Media to Self-Manage Health Care When Living With and Beyond Breast Cancer: In-Depth Qualitative Study", journal="J Med Internet Res", year="2020", month="May", day="25", volume="22", number="5", pages="e16902", keywords="breast cancer", keywords="social media", keywords="internet", keywords="self-management", keywords="psychosocial health", keywords="survivorship", abstract="Background: As breast cancer survival rates improve and structural health resources are increasingly being stretched, health providers require people living with and beyond breast cancer (LwBBC) to self-manage aspects of their care. Objective: This study aimed to explore how women use and experience social media to self-manage their psychosocial needs and support self-management across the breast cancer continuum. Methods: The experiences of 21 women (age range 27-64 years) were explored using an in-depth qualitative approach. The women varied in the duration of their experiences of LwBBC, which facilitated insights into how they evolve and change their self-management strategies over time. Semistructured interviews were analyzed inductively using a thematic analysis, a polytextual analysis, and voice-centered relational methods. Results: The use of multiple social media platforms, such as YouTube, Facebook, WhatsApp, and Twitter, enabled women to self-manage aspects of their care by satisfying needs for timely, relevant, and appropriate support, by navigating identities disrupted by diagnosis and treatment and by allowing them to (re)gain a sense of control. Women described extending their everyday use of multiple platforms to self-manage their care. However, women experienced social media as both empowering and dislocating, as their engagement was impacted by their everyday experiences of LwBBC. Conclusions: Health care professionals (HCPs) need to be more aware, and open to the possibilities, of women using multiple social media resources as self-management tools. It is important for HCPs to initiate value-free discussions and create the space necessary for women to share how social media resources support a tailored and timely self-managed approach to their unique psychosocial needs. ", doi="10.2196/16902", url="http://www.jmir.org/2020/5/e16902/", url="http://www.ncbi.nlm.nih.gov/pubmed/32364510" } @Article{info:doi/10.2196/17824, author="Martin, Faith and Wright, Hayley and Moody, Louise and Whiteman, Becky and McGillion, Michael and Clyne, Wendy and Pearce, Gemma and Turner, Andy", title="Help to Overcome Problems Effectively for Cancer Survivors: Development and Evaluation of a Digital Self-Management Program", journal="J Med Internet Res", year="2020", month="May", day="19", volume="22", number="5", pages="e17824", keywords="positive psychology", keywords="self-management", keywords="hope", keywords="quality of life", keywords="survivorship", keywords="cancer", abstract="Background: People living with cancer face numerous psychosocial challenges, including cancer-related fatigue, fear of recurrence, and depression. There is a lack of digital interventions tailored to the needs of people living with all types of cancer. We developed a 6-week, digital, peer-delivered, self-management program: iHOPE (Help to Overcome Problems Effectively; where `i' indicates the digital version of the program). The program is underpinned by positive psychology and cognitive behavioral therapy to meet these psychosocial challenges. Objective: This study aimed to assess the feasibility of the iHOPE program among people living with cancer. Program adherence and satisfaction along with changes in psychological distress and positive well-being were measured. Methods: A pre-post, acceptability, and feasibility design was used. People living with cancer (N=114) were recruited via a national cancer charity in the United Kingdom and were given access to the iHOPE program. Demographic and other participant characteristics were recorded. Participants completed digital measures at baseline and the end of the 6-week program for depression, anxiety, cancer-related fatigue, cancer worry or fear of cancer recurrence, positive mental well-being, hope, gratitude, and health status. The website's system recorded data on the usage of the program. Satisfaction with the program was also measured. Results: A total of 114 participants completed the baseline questionnaires. Of these, 70 people (61.4\%) participated in all 6 sessions. The mean number of sessions undertaken was 5.0 (SD 1.5). Moreover, 44.7\% (51/114) of participants completed at least three sessions and end-of-program outcome measures. A total of 59 participants completed the satisfaction questionnaire, where ?90\% (54/58) of participants reported that the program was easy to navigate and was well managed by the peer facilitators, and that they found the social networking tools useful. Preliminary efficacy testing among the 51 participants who completed baseline and postprogram outcome measures showed that postprogram scores decreased for depression, anxiety, cancer-related fatigue, and fear of recurrence (all P<.001) and increased for positive mental well-being (P<.001), hope (both P<.001), and gratitude (P=.02). Conclusions: The feasibility evidence is promising, showing that the peer-delivered digital iHOPE program is acceptable and practical. Implementation of the iHOPE program on a wider scale will incorporate further research and development to maximize the completion rates of the measures. Initial effectiveness data suggest positive impacts on important cancer-related quality of life and mental well-being outcomes. A randomized controlled trial design with a longer follow-up is needed to confirm the potential of the iHOPE program for improving mental and physical health outcomes for cancer survivors. ", doi="10.2196/17824", url="http://www.jmir.org/2020/5/e17824/", url="http://www.ncbi.nlm.nih.gov/pubmed/32209529" } @Article{info:doi/10.2196/16604, author="Igelstr{\"o}m, Helena and Hauffman, Anna and Alfonsson, Sven and Sj{\"o}str{\"o}m, Jonas and Cajander, {\AA}sa and Johansson, Birgitta", title="User Experiences of an Internet-Based Stepped-Care Intervention for Individuals With Cancer and Concurrent Symptoms of Anxiety or Depression (the U-CARE AdultCan Trial): Qualitative Study", journal="J Med Internet Res", year="2020", month="May", day="19", volume="22", number="5", pages="e16604", keywords="interactive web portal", keywords="stepped care", keywords="user experience", keywords="cancer", keywords="interviews", abstract="Background: The internet-based stepped-care intervention iCAN-DO, used in the multicenter randomized controlled trial AdultCan, was developed for adult patients undergoing treatment for cancer and concurrently experiencing anxiety or depressive symptoms. iCAN-DO aimed to decrease symptoms of anxiety or depression. Step 1 comprises access to a library with psychoeducational material and a peer-support section, as well as the possibility to pose questions to a nurse. Step 2 of the intervention offers treatment consisting of internet-based cognitive behavioral therapy (iCBT) to participants still experiencing anxiety or depression at 1, 4, or 7 months after inclusion. Objective: The study aimed to explore user experiences of delivery, design, and structure of iCAN-DO from the perspective of people with cancer. Methods: We studied user experiences by interviewing 15 informants individually: 10 women with breast cancer (67\%), 4 men with prostate cancer (27\%), and 1 man with colorectal cancer (7\%) with a mean age 58.9 years (SD 8.9). The interviews focused on informants' perceptions of ease of use and of system design and structure. Informants had been included in iCAN-DO for at least 7 months. They were purposefully selected based on activity in Step 1, participation in iCBT (ie, Step 2), gender, and diagnosis. Results: Of the 15 informants, 6 had been offered iCBT (40\%). All informants used the internet on a daily basis, but 2 (13\%) described themselves as very inexperienced computer users. The analysis revealed three subthemes, concerning how user experiences were affected by disease-specific factors and side effects (User experience in the context of cancer), technical problems (Technical struggles require patience and troubleshooting), and the structure and design of iCAN-DO (Appealing and usable, but rather simple). Conclusions: The results indicate that user experiences were affected by informants' life situations, the technical aspects and the design of iCAN-DO, and informants' preferences. The results have generated some developments feasible to launch during the ongoing study, but if iCAN-DO is to be used beyond research interest, a greater level of tailoring of information, features, and design may be needed to improve user experiences. The use of recurrent questionnaires during the treatment period may highlight an individual's health, but also function as a motivator showing improvements over time. ", doi="10.2196/16604", url="http://www.jmir.org/2020/5/e16604/", url="http://www.ncbi.nlm.nih.gov/pubmed/32427108" } @Article{info:doi/10.2196/15178, author="Subnis, B. Utkarsh and Farb, AS Norman and Piedalue, Laura Katherine-Ann and Speca, Michael and Lupichuk, Sasha and Tang, A. Patricia and Faris, Peter and Thoburn, Mark and Saab, J. Bechara and Carlson, E. Linda", title="A Smartphone App--Based Mindfulness Intervention for Cancer Survivors: Protocol for a Randomized Controlled Trial", journal="JMIR Res Protoc", year="2020", month="May", day="11", volume="9", number="5", pages="e15178", keywords="mobile health", keywords="psycho-oncology", keywords="mindfulness", keywords="mind-body therapies", abstract="Background: Cancer patients transitioning to survivorship after completing cancer treatments need psychosocial interventions to manage stressors such as anxiety, depression, and fear of cancer recurrence. Mindfulness-based interventions (MBIs) are effective for treating these symptoms; however, cancer survivors are often unable to participate in face-to-face interventions because of difficulties such as work and family commitments, treatment-related side-effects, scheduling conflicts, and geography. Smartphone app--based MBIs are an innovative way to deliver psychosocial cancer care and can overcome several such difficulties, since patients can participate at their own convenience. Objective: The SEAMLESS (Smartphone App--Based Mindfulness Intervention for Cancer Survivors) study aims to evaluate the efficacy of a tailored app-based mindfulness intervention for cancer survivors (the Am Mindfulness-Based Cancer Survivorship---MBCS---Journey) for treating (1) symptoms of stress (primary outcome), as well as (2) fear of cancer recurrence, anxiety, depression, fatigue, and overall physical functioning (secondary outcomes). This is the first Canadian efficacy trial of a tailored mindfulness app intervention in cancer survivors. Methods: This is a randomized waitlist-controlled trial, which will evaluate the effectiveness of Am MBCS for impacting the primary and secondary outcomes in cancer survivors who have completed all their cancer treatments. Outcomes will be assessed using web-based surveys with validated psychometric instruments at (1) baseline, (2) mid-intervention (2 weeks later), (3) immediately postintervention (4 weeks), (4) 3 months postbaseline, (5) 6 months postbaseline, and (6) 12 months postbaseline. The waitlist group will complete all assessments and will cross over to the intervention condition after the 3-month assessment. In addition, data will be obtained by the smartphone app itself, which includes users' engagement with the app-based intervention, their emotional state (eg, angry and elated) from a user-inputted digital emotion-mapping board, and psychobiometric data using photoplethysmography technology. Results: The study received ethics approval in September 2018 and recruitment commenced in January 2019. Participants are being recruited through a provincial cancer registry, and the majority of participants currently enrolled are breast (44/83, 53\%) or colorectal (17/83, 20\%) cancer survivors, although some survivors of other cancer are also present. Data collection for analysis of the primary outcome time-point will be complete by September 2019, and the follow-up data will be collected and analyzed by September 2020. Data will be analyzed to determine group differences using linear mixed modelling statistical techniques. Conclusions: Cancer care providers are uncertain about the efficacy of app-based mindfulness interventions for patients, which are available in great supply in today's digital world. This study will provide rigorously evaluated efficacy data for an app-based mindfulness intervention for cancer survivors, which if helpful, could be made available for psychosocial care at cancer centers worldwide. Trial Registration: ClinicalTrials.gov NCT03484000; https://clinicaltrials.gov/ct2/show/NCT03484000 International Registered Report Identifier (IRRID): DERR1-10.2196/15178 ", doi="10.2196/15178", url="https://www.researchprotocols.org/2020/5/e15178", url="http://www.ncbi.nlm.nih.gov/pubmed/32390591" } @Article{info:doi/10.2196/16476, author="Chow, I. Philip and Showalter, L. Shayna and Gerber, Matthew and Kennedy, M. Erin and Brenin, David and Mohr, C. David and Lattie, G. Emily and Gupta, Alisha and Ocker, Gabrielle and Cohn, F. Wendy", title="Use of Mental Health Apps by Patients With Breast Cancer in the United States: Pilot Pre-Post Study", journal="JMIR Cancer", year="2020", month="Apr", day="15", volume="6", number="1", pages="e16476", keywords="breast cancer", keywords="mental health", keywords="mHealth", abstract="Background: Nearly half of the patients with breast cancer experience clinically significant mental distress within the first year of receiving their cancer diagnosis. There is an urgent need to identify scalable and cost-efficient ways of delivering empirically supported mental health interventions to patients with breast cancer. Objective: The aim of this study was to evaluate the feasibility of in-clinic recruitment for a mobile phone app study and to evaluate the usability and preliminary impact of a suite of mental health apps (IntelliCare) with phone coaching on psychosocial distress symptoms in patients recently diagnosed with breast cancer. Methods: This pilot study adopted a within-subject, 7-week pre-post study design. A total of 40 patients with breast cancer were recruited at a US National Cancer Institute--designated clinical cancer center. Self-reported distress (Patient Health Questionnaire-4) and mood symptoms (Patient-Reported Outcomes Measurement Information System depression and anxiety scales) were assessed at baseline and postintervention. App usability was assessed at postintervention. Results: The minimum recruitment threshold was met. There was a significant decrease in general distress symptoms, as well as symptoms of depression and anxiety, from baseline to postintervention. Overall, participants reported high levels of ease of app use and learning. Scores for app usefulness and satisfaction were reinforced by some qualitative feedback suggesting that tailoring the apps more for patients with breast cancer could enhance engagement. Conclusions: There is a dire need for scalable, supportive interventions in cancer. The results from this study inform how scalable mobile phone--delivered programs with additional phone support can be used to support patients with breast cancer. International Registered Report Identifier (IRRID): RR2-10.2196/11452 ", doi="10.2196/16476", url="http://cancer.jmir.org/2020/1/e16476/", url="http://www.ncbi.nlm.nih.gov/pubmed/32293570" } @Article{info:doi/10.2196/16547, author="Hauffman, Anna and Alfonsson, Sven and Igelstr{\"o}m, Helena and Johansson, Birgitta", title="Experiences of Internet-Based Stepped Care in Individuals With Cancer and Concurrent Symptoms of Anxiety and Depression: Qualitative Exploration Conducted Alongside the U-CARE AdultCan Randomized Controlled Trial", journal="J Med Internet Res", year="2020", month="Mar", day="30", volume="22", number="3", pages="e16547", keywords="internet-based stepped care", keywords="internet-based interactive health communication application", keywords="internet-based intervention", keywords="telemedicine", keywords="patient portals", keywords="oncology nursing", keywords="self care", keywords="psychoeducation", abstract="Background: Individuals with newly diagnosed cancer may experience impaired health in several aspects and often have a large need for information and support. About 30\% will experience symptoms of anxiety and depression, with varying needs of knowledge and support. Despite this, many of these patients lack appropriate support. Internet-based support programs may offer a supplement to standard care services, but must be carefully explored from a user perspective. Objective: The purpose of this study was to explore the participants' perceptions of the relevance and benefits of an internet-based stepped care program (iCAN-DO) targeting individuals with cancer and concurrent symptoms of anxiety and depression. Methods: We performed a qualitative study with an inductive approach, in which we used semistructured questions to interview 15 individuals using iCAN-DO. We analyzed the interviews using content analysis. Results: The analysis found 17 subcategories regarding the stepped care intervention, resulting in 4 categories. Participants described the need for information as large and looked upon finding information almost as a survival strategy when receiving the cancer diagnosis. iCAN-DO was seen as a useful, reliable source of information and support. It was used as a complement to standard care and as a means to inform next of kin. Increased knowledge was a foundation for continued processing of participants' own feelings. The optimal time to gain access to iCAN-DO would have been when being informed of the diagnosis. The most common denominator was feeling acknowledged and supported, but with a desire for further adaptation of the system to each individual's own situation and needs. Conclusions: Users saw the internet-based stepped care program as safe and reliable and used it as a complement to standard care. Similar interventions may gain from more personalized contents, being integrated into standard care, or using symptom tracking to adjust the contents. Offering this type of program close to diagnosis may provide benefits to users. Trial Registration: ClincalTrials.gov NCT-01630681; https://clinicaltrials.gov/ct2/show/NCT01630681 ", doi="10.2196/16547", url="http://www.jmir.org/2020/3/e16547/", url="http://www.ncbi.nlm.nih.gov/pubmed/32224483" } @Article{info:doi/10.2196/17163, author="Kobayashi, Rei and Ishizaki, Masato", title="Relationship Between Health Literacy and Social Support and the Quality of Life in Patients With Cancer: Questionnaire Study", journal="J Participat Med", year="2020", month="Mar", day="19", volume="12", number="1", pages="e17163", keywords="health literacy", keywords="social support", keywords="quality of life", keywords="neoplasms", keywords="health communication", abstract="Background: Low health literacy is associated with factors such as not taking medication as prescribed as well as poor health status and increased hospitalization and mortality risk, and has been identified as a risk factor for decreased physical function in older individuals. Health literacy is becoming an increasingly important issue because of the increased number of people affected by cancer who must make complicated treatment decisions. Health literacy has been shown to be positively associated with quality of life (QOL), and social support has been identified as important for addressing health-related problems and reducing the relative risk of mortality in patients with cancer. However, few studies have examined the relationship between health literacy, social support, age, and QOL. Objective: The aim of this study is to examine the effects of health literacy, social support, and age on the QOL of patients with cancer. Methods: An anonymous, self-administered online questionnaire was conducted from March 28 to 30, 2017, in Japan on patients with lung, stomach, or colon cancer that were voluntarily registered with an internet survey company. The survey covered basic attributes, health literacy, social support, and QOL. The European Health Literacy Survey Questionnaire, a comprehensive measure of health literacy instrument, was used to measure health literacy; the Japanese version of the Social Support Scale was used to measure social support; and the Japanese version of the Functional Assessment of Cancer Therapy-General (7-item version) assessment tool was used to measure QOL. Results: A total of 735 survey invitations were randomly sent to patients with lung, stomach, or colorectal cancer, and responses were obtained from 619 (82.2\% response rate). Significant effects on the QOL in patients with lung, stomach, or colon cancer were observed for health literacy, social support, and age, and for the interactions of health literacy and social support and of social support and age. Health literacy, social support, and the interaction between these variables also showed a significant effect on the QOL in patients 50 years or older, but not on those younger than 50 years. Conclusions: The results of this study revealed that higher health literacy, social support, and age were associated with the QOL in patients with cancer. In addition, the relationship with QOL was stronger for social support than for health literacy. These findings suggest the importance of health literacy and social support and indicate that social support has a greater effect on QOL than does health literacy, while the QOL in patients with cancer aged younger than 50 years was lower than that of those 50 years or older. Therefore, elucidating the needs of these patients and strengthening social support based on those needs may improve their QOL. ", doi="10.2196/17163", url="http://jopm.jmir.org/2020/1/e17163/" } @Article{info:doi/10.2196/17084, author="Hou, I-Ching and Lin, Hsin-Yi and Shen, Shan-Hsiang and Chang, King-Jen and Tai, Hao-Chih and Tsai, Ay-Jen and Dykes, C. Patricia", title="Quality of Life of Women After a First Diagnosis of Breast Cancer Using a Self-Management Support mHealth App in Taiwan: Randomized Controlled Trial", journal="JMIR Mhealth Uhealth", year="2020", month="Mar", day="4", volume="8", number="3", pages="e17084", keywords="breast cancer", keywords="mHealth app", keywords="self-management", keywords="quality of life", abstract="Background: There are over 2 million newly diagnosed patients with breast cancer worldwide with more than 10,000 cases in Taiwan each year. During 2017-2018, the National Yang-Ming University, the Taiwan University of Science and Technology, and the Taiwan Breast Cancer Prevention Foundation collaborated to develop a breast cancer self-management support (BCSMS) mHealth app for Taiwanese women with breast cancer. Objective: The aim of this study was to investigate the quality of life (QoL) of women with breast cancer in Taiwan after using the BCSMS app. Methods: After receiving a first diagnosis of breast cancer, women with stage 0 to III breast cancer, who were recruited from social networking sites or referred by their oncologists or oncology case managers, were randomized 1:1 into intervention and control groups. Intervention group subjects used the BCSMS app and the control group subjects received usual care. Two questionnaires---the European Organization for Research and Treatment of Cancer (EORTC) Quality-of-Life Questionnaire Core 30 (QLQ-C30) and the EORTC Breast Cancer-Specific Quality-of-Life Questionnaire (QLQ-BR23)---were distributed to subjects in both arms. Paper-based questionnaires were used at baseline; paper-based or Web-based questionnaires were used at 1.5-month and 3-month follow-up evaluations. All evaluations were self-assessed and anonymous, and participants were blinded to their allocation groups. Descriptive analysis, the Pearson chi-square test, analysis of variance, and the generalized estimating equation were used to analyze the data. Missing values, with and without multi-imputation techniques, were used for sensitivity analysis. Results: A total of 112 women were enrolled and randomly allocated to either the experimental group (n=53) or control group (n=59). The follow-up completion rate was 89.3\% (100/112). The demographic data showed homogeneity between the two groups in age (range 50-64 years), breast cancer stage (stage II), marital status (married), working status (employed), and treatment status (receiving treatments). The mean total QoL summary scores from the QLQ-C30 (83.45 vs 82.23, P=.03) and the QLQ-BR23 (65.53 vs 63.13, P=.04) were significantly higher among the experimental group versus the control group, respectively, at 3 months. Conclusions: This research provides support for using a mobile health care app to promote the QoL among women in Taiwan after a first diagnosis of breast cancer. The BCSMS app could be used to support disease self-management, and further evaluation of whether QoL is sustained is warranted. Trial Registration: ClinicalTrials.gov NCT004174248; https://clinicaltrials.gov/ct2/show/NCT04174248 ", doi="10.2196/17084", url="http://mhealth.jmir.org/2020/3/e17084/", url="http://www.ncbi.nlm.nih.gov/pubmed/32130181" } @Article{info:doi/10.2196/16926, author="Huberty, Jennifer and Puzia, Megan and Eckert, Ryan and Larkey, Linda", title="Cancer Patients' and Survivors' Perceptions of the Calm App: Cross-Sectional Descriptive Study", journal="JMIR Cancer", year="2020", month="Feb", day="10", volume="6", number="1", pages="e16926", keywords="cancer", keywords="cancer survivors", keywords="mindfulness", keywords="meditation", keywords="consumer behavior", keywords="mobile apps", keywords="health", keywords="mental health", abstract="Background: There is a need for tools to decrease cancer patients' and survivors' long-term symptom burden. Complementary strategies, such as meditation, can accompany pharmacologic therapy to improve symptoms. Although support programs with targeted content have wider reach, higher adherence, and greater impact, there are no consumer-based meditation apps designed specifically for cancer. Objective: This study aimed to gather information to advise the development of a cancer-specific meditation app in a small convenience sample of cancer patients and survivors who currently use the Calm app. Methods: Adult cancer patients and survivors who are Calm users (N=82) were recruited through the Daily Calm Facebook page. Participants completed a Web-based survey related to Calm app use and satisfaction, interest in and ideas for a cancer-specific Calm app, and demographic characteristics. Open-ended responses were inductively coded. Results: Participants were aged between 18 and 72 years (mean 48.60 years, SD 15.20), mostly female (77/82, 94\%), white (65/79, 82\%), and non-Hispanic (70/75, 93\%), and reported using Calm at least 5 times per week (49/82, 60\%). Although rates of satisfaction with current Calm components were high (between 65/82, 79\% and 51/81, 63\%), only 49\% (40/82) of participants used guided meditations that they felt specifically helped with their cancer-related symptoms and survivorship, and 40\% (33/82) would prefer more cancer-related content, with guided meditations for cancer-specific anxieties (eg, fear of recurrence; n=15) and coping with strong emotions (n=12) being the most common suggestions. A majority of participants (51/82, 62\%) reported that they would be interested in becoming a member of a Calm cancer community (eg, in-app discussion boards: 41/46, 89\%; and social media communities: 35/42, 83\%). Almost half of the participants (37/82, 45\%) reported that they would benefit from features that tracked symptoms in concurrence with app usage, but respondents were divided on whether this information should be shared with health care providers through the app (49/82, 60\% would share). Conclusions: Responses suggest ways in which the current Calm app could be adapted to better fit cancer patients' and survivors' needs and preferences, including adding cancer-specific content, increasing the amount of content focusing on coping with strong emotions, developing communities for Calm users who are cancer patients and survivors, and including features that track cancer-related symptoms. Given differences in opinions about which features were desirable or would be useful, there is a clear need for future cancer-specific apps to be customizable (eg, ability to turn different features on or off). Although future research should address these topics in larger, more diverse samples, these data will serve as a starting point for the development of cancer-specific meditation apps and provide a framework for evaluating their effects. ", doi="10.2196/16926", url="http://cancer.jmir.org/2020/1/e16926/" } @Article{info:doi/10.2196/15750, author="Chow, I. Philip and Drago, Fabrizio and Kennedy, M. Erin and Cohn, F. Wendy", title="A Novel Mobile Phone App Intervention With Phone Coaching to Reduce Symptoms of Depression in Survivors of Women's Cancer: Pre-Post Pilot Study", journal="JMIR Cancer", year="2020", month="Feb", day="6", volume="6", number="1", pages="e15750", keywords="mobile apps", keywords="mental health", keywords="mHealth", keywords="women", keywords="cancer survivors", abstract="Background: Psychological distress is a major issue among survivors of women's cancer who face numerous barriers to accessing in-person mental health treatments. Mobile phone app--based interventions are scalable and have the potential to increase access to mental health care among survivors of women's cancer worldwide. Objective: This study aimed to evaluate the acceptability and preliminary efficacy of a novel app-based intervention with phone coaching in a sample of survivors of women's cancer. Methods: In a single-group, pre-post, 6-week pilot study in the United States, 28 survivors of women's cancer used iCanThrive, a novel app intervention that teaches skills for coping with stress and enhancing well-being, with added phone coaching. The primary outcome was self-reported symptoms of depression (Center for Epidemiologic Studies Depression Scale). Emotional self-efficacy and sleep disruption were also assessed at baseline, 6-week postintervention, and 4 weeks after the intervention period. Feedback obtained at the end of the study focused on user experience of the intervention. Results: There were significant decreases in symptoms of depression and sleep disruption from baseline to postintervention. Sleep disruption remained significantly lower at 4-week postintervention compared with baseline. The iCanThrive app was launched a median of 20.5 times over the intervention period. The median length of use was 2.1 min. Of the individuals who initiated the intervention, 87\% (20/23) completed the 6-week intervention. Conclusions: This pilot study provides support for the acceptability and preliminary efficacy of the iCanThrive intervention. Future work should validate the intervention in a larger randomized controlled study. It is important to develop scalable interventions that meet the psychosocial needs of different cancer populations. The modular structure of the iCanThrive app and phone coaching could impact a large population of survivors of women's cancer. ", doi="10.2196/15750", url="http://cancer.jmir.org/2020/1/e15750/" } @Article{info:doi/10.2196/14361, author="Guccione, Lisa and Gough, Karla and Drosdowsky, Allison and Fisher, Krista and Price, Timothy and Pavlakis, Nick and Khasraw, Mustafa and Wyld, David and Ransom, David and Kong, Grace and Rogers, Megan and Leyden, Simone and Leyden, John and Michael, Michael and Schofield, Penelope", title="Defining the Supportive Care Needs and Psychological Morbidity of Patients With Functioning Versus Nonfunctioning Neuroendocrine Tumors: Protocol for a Phase 1 Trial of a Nurse-Led Online and Phone-Based Intervention", journal="JMIR Res Protoc", year="2019", month="Dec", day="3", volume="8", number="12", pages="e14361", keywords="cancer", keywords="neuroendocrine tumors", keywords="NETs", keywords="supportive care interventions", keywords="telehealth", keywords="eHealth", abstract="Background: Online information resources and support have been demonstrated to positively influence the well-being of people diagnosed with cancer. This has been explored in past literature for more common cancers; however, for rare cancers, such as neuroendocrine tumors (NETs), there are little to no support or resources available. Despite relatively good prognoses, the quality of life (QoL) of patients with NETs is significantly lower compared with samples of mixed cancer patients and the general population. Patients with NETs also typically report unclear and difficult pathways of disease management and treatment, given the heterogeneity of the diagnosis. There is a vital need to improve the availability of disease-specific information for this patient group and provide supportive care that is tailored to the unique needs of the NET patient population. Objective: This study described the protocol of a study aimed to better understand the outcomes and experiences of patients diagnosed with NETs and to develop and pilot test a nurse-led online and phone-based intervention that will provide tailored supportive care targeted to NET subgroups (functioning vs nonfunctioning). Methods: This is a multisite cohort with 3 phases, incorporating both quantitative and qualitative data collection. Phase 1 is a mixed methods prospective cohort study of NET patients identifying differences in patient experiences and priority of needs between NET subgroups. Phase 2 utilizes results from phase 1 to develop an online and nurse-led phone-based intervention. Phase 3 is to pilot test and evaluate the intervention's acceptability, appropriateness, and feasibility. Results: Currently, the project is progressing through phase 1 and has completed recruitment. A total of 138 participants have been recruited to the study. To date, patient-reported outcome data from 123 participants at baseline and 87 participants at 6-month follow-up have been collected. Of these, qualitative data from semistructured interviews from 35 participants have also been obtained. Phase 2 and phase 3 of the project are yet to be completed. Conclusions: Limited research for patients with NETs suggests that QoL and patient experiences are significantly impaired compared with the general population. Furthermore, past research has failed to delineate how the clinical variability between those with functioning and nonfunctioning NETs impacts patient supportive care needs. This study will improve on the availability of disease-specific information as well as informing the design of a nurse-led online and phone-based supportive care intervention tailored for the unique needs of the NET patient population. International Registered Report Identifier (IRRID): DERR1-10.2196/14361 ", doi="10.2196/14361", url="https://www.researchprotocols.org/2019/12/e14361", url="http://www.ncbi.nlm.nih.gov/pubmed/31793892" } @Article{info:doi/10.2196/15787, author="Bibault, Jean-Emmanuel and Chaix, Benjamin and Guillemass{\'e}, Arthur and Cousin, Sophie and Escande, Alexandre and Perrin, Morgane and Pienkowski, Arthur and Delamon, Guillaume and Nectoux, Pierre and Brouard, Beno{\^i}t", title="A Chatbot Versus Physicians to Provide Information for Patients With Breast Cancer: Blind, Randomized Controlled Noninferiority Trial", journal="J Med Internet Res", year="2019", month="Nov", day="27", volume="21", number="11", pages="e15787", keywords="chatbot", keywords="clinical trial", keywords="cancer", abstract="Background: The data regarding the use of conversational agents in oncology are scarce. Objective: The aim of this study was to verify whether an artificial conversational agent was able to provide answers to patients with breast cancer with a level of satisfaction similar to the answers given by a group of physicians. Methods: This study is a blind, noninferiority randomized controlled trial that compared the information given by the chatbot, Vik, with that given by a multidisciplinary group of physicians to patients with breast cancer. Patients were women with breast cancer in treatment or in remission. The European Organisation for Research and Treatment of Cancer Quality of Life Group information questionnaire (EORTC QLQ-INFO25) was adapted and used to compare the quality of the information provided to patients by the physician or the chatbot. The primary outcome was to show that the answers given by the Vik chatbot to common questions asked by patients with breast cancer about their therapy management are at least as satisfying as answers given by a multidisciplinary medical committee by comparing the success rate in each group (defined by a score above 3). The secondary objective was to compare the average scores obtained by the chatbot and physicians for each INFO25 item. Results: A total of 142 patients were included and randomized into two groups of 71. They were all female with a mean age of 42 years (SD 19). The success rates (as defined by a score >3) was 69\% (49/71) in the chatbot group versus 64\% (46/71) in the physicians group. The binomial test showed the noninferiority (P<.001) of the chatbot's answers. Conclusions: This is the first study that assessed an artificial conversational agent used to inform patients with cancer. The EORTC INFO25 scores from the chatbot were found to be noninferior to the scores of the physicians. Artificial conversational agents may save patients with minor health concerns from a visit to the doctor. This could allow clinicians to spend more time to treat patients who need a consultation the most. Trial Registration: Clinicaltrials.gov NCT03556813, https://tinyurl.com/rgtlehq ", doi="10.2196/15787", url="http://www.jmir.org/2019/11/e15787/", url="http://www.ncbi.nlm.nih.gov/pubmed/31774408" } @Article{info:doi/10.2196/12536, author="Lognos, B{\'e}atrice and Carbonnel, Fran{\c{c}}ois and Boulze Launay, Isabelle and Bringay, Sandra and Guerdoux-Ninot, Estelle and Mollevi, Caroline and Senesse, Pierre and Ninot, Gregory", title="Complementary and Alternative Medicine in Patients With Breast Cancer: Exploratory Study of Social Network Forum Data", journal="JMIR Cancer", year="2019", month="Nov", day="27", volume="5", number="2", pages="e12536", keywords="complementary and alternative medicine (CAM)", keywords="nonpharmacological interventions", keywords="cancer", keywords="social network", keywords="forum", keywords="patient", abstract="Background: Patients and health care professionals are becoming increasingly preoccupied in complementary and alternative medicine (CAM) that can also be called nonpharmacological interventions (NPIs). In just a few years, this supportive care has gone from solutions aimed at improving the quality of life to solutions intended to reduce symptoms, supplement oncological treatments, and prevent recurrences. Digital social networks are a major vector for disseminating these practices that are not always disclosed to doctors by patients. An exploration of the content of exchanges on social networks by patients suffering from breast cancer can help to better identify the extent and diversity of these practices. Objective: This study aimed to explore the interest of patients with breast cancer in CAM from posts published in health forums and French-language social media groups. Methods: The retrospective study was based on a French database of 2 forums and 4 Facebook groups between June 3, 2006, and November 17, 2015. The extracted, anonymized, and compiled data (264,249 posts) were analyzed according to the occurrences associated with the NPI categories and NPI subcategories, their synonyms, and their related terms. Results: The results showed that patients with breast cancer use mainly physical (37.6\%) and nutritional (31.3\%) interventions. Herbal medicine is a subcategory that was cited frequently. However, the patients did not mention digital interventions. Conclusions: This exploratory study of the main French forums and discussion groups indicates a significant interest in CAM during and after treatments for breast cancer, with primarily physical and nutritional interventions complementing approved treatments. This study highlights the importance of accurate information (vs fake medicine), prescription and monitoring of these interventions, and the mediating role that health professionals must play in this regard. ", doi="10.2196/12536", url="http://cancer.jmir.org/2019/2/e12536/", url="http://www.ncbi.nlm.nih.gov/pubmed/31774404" } @Article{info:doi/10.2196/17045, author="deBronkart, Dave and Eysenbach, Gunther", title="Gimme My Damn Data (and Let Patients Help!): The \#GimmeMyDamnData Manifesto", journal="J Med Internet Res", year="2019", month="Nov", day="22", volume="21", number="11", pages="e17045", keywords="data", keywords="participatory medicine", keywords="ehealth", doi="10.2196/17045", url="http://www.jmir.org/2019/11/e17045/", url="http://www.ncbi.nlm.nih.gov/pubmed/31755873" } @Article{info:doi/10.2196/14285, author="Booth, Alison and Bell, Timothy and Halhol, Sonia and Pan, Shiyu and Welch, Verna and Merinopoulou, Evie and Lambrelli, Dimitra and Cox, Andrew", title="Using Social Media to Uncover Treatment Experiences and Decisions in Patients With Acute Myeloid Leukemia or Myelodysplastic Syndrome Who Are Ineligible for Intensive Chemotherapy: Patient-Centric Qualitative Data Analysis", journal="J Med Internet Res", year="2019", month="Nov", day="22", volume="21", number="11", pages="e14285", keywords="social media", keywords="health-related quality of life", keywords="patient-centric", keywords="leukemia", keywords="myeloid", keywords="acute", keywords="myelodysplastic syndromes", keywords="natural language processing", keywords="patient preference", keywords="qualitative research", abstract="Background: Until recently, treatment options were limited for patients with acute myeloid leukemia and myelodysplastic syndrome (AML and MDS) who are ineligible for intensive chemotherapy. Owing to the condition's rapid progression, it is difficult to identify what is most important to patients when making treatment decisions. Patients' needs can be better addressed by gaining a deeper understanding of their perspectives, which is valuable in the decision-making process. The Food and Drug Administration recently encouraged the use of social media as a tool to gain insight on patients' perspectives regarding symptoms experienced and the impacts of their disease. Objective: This study aimed to use disease-specific social media posts by patients with AML or MDS who are ineligible for intensive chemotherapy and their caregivers to capture factors they feel are most important, and to provide current evidence to inform and characterize these perspectives. Methods: Posts by patients with AML or MDS and their caregivers were extracted from publicly available discussions on 3 large AML- or MDS--specific sites. These posts were manually reviewed to only include patients who are ineligible for intensive chemotherapy. A total of 1443 posts from 220 AML patients/caregivers and 2733 posts from 127 MDS patients/caregivers met the study inclusion criteria. A qualitative data analysis (QDA) of a sample of 85 patients'/caregivers' posts was conducted to identify themes, and a targeted QDA of posts from 79 users focused on treatment decision discussions. Posts were manually reviewed, and relevant text segments were coded and grouped into categories and overall themes. Results: Eighty-six percent (73/85) of users in the overall QDA had relevant information about the key objectives. The most commonly discussed treatment experience theme was the humanistic burden of AML or MDS in terms of emotional/physical impact and impact on family (86\%, 63/73 of users), followed by treatment decisions (56\%, 41/73) and unmet needs (50\%, 37/73). In the QDA of treatment decisions, 60 posts from 45 users contained relevant information. Patients commonly reported the desire to reach specific milestones, including birthdays and weddings. They wished for a better quality of life over quantity of life, did not want the risk of suffering from side effects, and expressed a clear preference to be at home rather than in a hospital or care home. Conclusions: This study was a novel application of disease-specific social media. It highlighted experiences in the current treatment of AML and MDS, including information gaps, patient/caregiver uncertainty, and the importance of understanding patients'/caregivers' goals and opinions. A clear finding from this research was the importance of reaching certain personal life goals and being at home with family and friends. The analysis showed that patients/caregivers face additional challenges, including humanistic impacts and a lack of information regarding treatment options. ", doi="10.2196/14285", url="http://www.jmir.org/2019/11/e14285/", url="http://www.ncbi.nlm.nih.gov/pubmed/31755871" } @Article{info:doi/10.2196/15018, author="Greer, Stephanie and Ramo, Danielle and Chang, Yin-Juei and Fu, Michael and Moskowitz, Judith and Haritatos, Jana", title="Use of the Chatbot ``Vivibot'' to Deliver Positive Psychology Skills and Promote Well-Being Among Young People After Cancer Treatment: Randomized Controlled Feasibility Trial", journal="JMIR Mhealth Uhealth", year="2019", month="Oct", day="31", volume="7", number="10", pages="e15018", keywords="chatbot", keywords="positive psychology", keywords="young adult", keywords="cancer", abstract="Background: Positive psychology interventions show promise for reducing psychosocial distress associated with health adversity and have the potential to be widely disseminated to young adults through technology. Objective: This pilot randomized controlled trial examined the feasibility of delivering positive psychology skills via the Vivibot chatbot and its effects on key psychosocial well-being outcomes in young adults treated for cancer. Methods: Young adults (age 18-29 years) were recruited within 5 years of completing active cancer treatment by using the Vivibot chatbot on Facebook messenger. Participants were randomized to either immediate access to Vivibot content (experimental group) or access to only daily emotion ratings and access to full chatbot content after 4 weeks (control). Created using a human-centered design process with young adults treated for cancer, Vivibot content includes 4 weeks of positive psychology skills, daily emotion ratings, video, and other material produced by survivors, and periodic feedback check-ins. All participants were assessed for psychosocial well-being via online surveys at baseline and weeks 2, 4, and 8. Analyses examined chatbot engagement and open-ended feedback on likability and perceived helpfulness and compared experimental and control groups with regard to anxiety and depression symptoms and positive and negative emotion changes between baseline and 4 weeks. To verify the main effects, follow-up analyses compared changes in the main outcomes between 4 and 8 weeks in the control group once participants had access to all chatbot content. Results: Data from 45 young adults (36 women; mean age: 25 [SD 2.9]; experimental group: n=25; control group: n=20) were analyzed. Participants in the experimental group spent an average of 74 minutes across an average of 12 active sessions chatting with Vivibot and rated their experience as helpful (mean 2.0/3, SD 0.72) and would recommend it to a friend (mean 6.9/10; SD 2.6). Open-ended feedback noted its nonjudgmental nature as a particular benefit of the chatbot. After 4 weeks, participants in the experimental group reported an average reduction in anxiety of 2.58 standardized t-score units, while the control group reported an increase in anxiety of 0.7 units. A mixed-effects models revealed a trend-level (P=.09) interaction between group and time, with an effect size of 0.41. Those in the experimental group also experienced greater reductions in anxiety when they engaged in more sessions (z=--1.9, P=.06). There were no significant (or trend level) effects by group on changes in depression, positive emotion, or negative emotion. Conclusions: The chatbot format provides a useful and acceptable way of delivering positive psychology skills to young adults who have undergone cancer treatment and supports anxiety reduction. Further analysis with a larger sample size is required to confirm this pattern. ", doi="10.2196/15018", url="http://mhealth.jmir.org/2019/10/e15018/", url="http://www.ncbi.nlm.nih.gov/pubmed/31674920" } @Article{info:doi/10.2196/12880, author="Mikal, P. Jude and Grande, W. Stuart and Beckstrand, J. Michael", title="Codifying Online Social Support for Breast Cancer Patients: Retrospective Qualitative Assessment", journal="J Med Internet Res", year="2019", month="Oct", day="24", volume="21", number="10", pages="e12880", keywords="social support", keywords="social networking", keywords="social media", keywords="health communication", keywords="breast cancer", abstract="Background: Social media has emerged as the epicenter for exchanging health-related information, resources, and emotional support. However, despite recognized benefits of social media for advancing health-promoting support exchange, researchers have struggled to differentiate between the different ways social support occurs and is expressed through social media. Objective: The objective of this study was to develop a fuller understanding of social support exchange by examining the ways in which breast cancer patients discuss their health needs and reach out for support on Facebook and to develop a coding schema that can be useful to other social media researchers. Methods: We conducted a retrospective qualitative assessment of text-based social support exchanges through Facebook among 30 breast cancer survivors. Facebook wall data were systematically scraped, organized, coded, and characterized by whether and which types of support were exchanged. Research questions focused on how often participants posted related to cancer, how often cancer patients reached out for support, and the relative frequency of informational, instrumental, or socioemotional support requests broadcast by patients on the site. Results: A novel ground-up coding schema applied to unwieldy Facebook data successfully identified social support exchange in two critical transitions in cancer treatment: diagnosis and transition off cancer therapy. Explanatory coding, design, and analysis processes led to a novel coding schema informed by 100,000 lines of data, an a priori literature review, and observed online social support exchanges. A final coding schema permits a compelling analysis of support exchange as a type of peer community, where members act proactively to buffer stress effects associated with negative health experiences. The coding schema framed operational definitions of what support meant and the forms each type of support could take in social media spaces. Conclusions: Given the importance of social media in social interaction, support exchange, and health promotion, our findings provide insight and clarity for researchers into the different forms informational, resource, and emotional support may take in Web-based social environments. Findings support broader continuity for evaluating computer-mediated support exchange. ", doi="10.2196/12880", url="http://www.jmir.org/2019/10/e12880/", url="http://www.ncbi.nlm.nih.gov/pubmed/31651404" } @Article{info:doi/10.2196/14065, author="Bisseling, Else and Cillessen, Linda and Spinhoven, Philip and Schellekens, Melanie and Compen, F{\'e}lix and van der Lee, Marije and Speckens, Anne", title="Development of the Therapeutic Alliance and its Association With Internet-Based Mindfulness-Based Cognitive Therapy for Distressed Cancer Patients: Secondary Analysis of a Multicenter Randomized Controlled Trial", journal="J Med Internet Res", year="2019", month="Oct", day="18", volume="21", number="10", pages="e14065", keywords="therapeutic alliance", keywords="telemedicine", keywords="mindfulness", keywords="cancer", keywords="patient dropouts", abstract="Background: Mindfulness-based cognitive therapy (MBCT) is an evidence-based group-based psychological treatment in oncology, resulting in reduction of depressive and anxiety symptoms. Internet-based MBCT (eMBCT) has been found to be an effective alternative for MBCT. The therapeutic alliance (the bond between therapist and patient,) is known to have a significant impact on psychological treatment outcomes, including MBCT. A primary concern in the practice of eMBCT is whether a good therapeutic alliance can develop. Although evidence for the beneficial effect of therapist assistance on treatment outcome in internet-based interventions (IBIs) is accumulating, it is still unclear whether the therapeutic alliance is related to outcome in IBIs. Objective: This study aimed to (1) explore whether early therapeutic alliance predicts treatment dropout in MBCT or eMBCT, (2) compare the development of the therapeutic alliance during eMBCT and MBCT, and (3) examine whether early therapeutic alliance is a predictor of the reduction of psychological distress and the increase of mental well-being at posttreatment in both conditions. Methods: This study was part of a multicenter randomized controlled trial (n=245) on the effectiveness of MBCT or eMBCT for distressed cancer patients. The therapeutic alliance was measured at the start of week 2 (ie, early therapeutic alliance), week 5, and week 9. Outcome measures were psychological distress, measured with the Hospital Anxiety and Depression Scale, and mental well-being, measured with the Mental Health Continuum-Short Form. Results: The strength of early therapeutic alliance did not predict treatment dropout in MBCT or eMBCT (B=?.39; P=.21). Therapeutic alliance increased over time in both conditions (F2,90=16.46; Wilks $\lambda$=0.732; P<.001). This increase did not differ between eMBCT and MBCT (F1,91=0.114; P=.74). Therapeutic alliance at week 2 predicted a decrease in psychological distress (B=?.12; t114=?2.656; P=.01) and an increase in mental well-being (B=.23; t113=2.651; P=.01) at posttreatment. The relationship with reduction of psychological distress differed between treatments: a weaker early therapeutic alliance predicted higher psychological distress at posttreatment in MBCT but not in eMBCT (B=.22; t113=2.261; P=.03). Conclusions: A therapeutic alliance can develop in both eMBCT and MBCT. Findings revealed that the strength of early alliance did not predict treatment dropout. Furthermore, the level of therapeutic alliance predicted reduced psychological distress and increased mental well-being at posttreatment in both conditions. Interestingly, the strength of therapeutic alliance appeared to be more related to treatment outcome in group-based MBCT than in eMBCT. Trial Registration: ClinicalTrials.gov NCT02138513; https://clinicaltrials.gov/ct2/show/NCT02138513 ", doi="10.2196/14065", url="https://www.jmir.org/2019/10/e14065", url="http://www.ncbi.nlm.nih.gov/pubmed/31628791" } @Article{info:doi/10.2196/13829, author="Pappot, Helle and Assam Taarnh{\o}j, Gry and Elsbernd, Abbey and Hjerming, Maiken and Hangh{\o}j, Signe and Jensen, Marc and Boisen, Arntz Kirsten", title="Health-Related Quality of Life Before and After Use of a Smartphone App for Adolescents and Young Adults With Cancer: Pre-Post Interventional Study", journal="JMIR Mhealth Uhealth", year="2019", month="Oct", day="3", volume="7", number="10", pages="e13829", keywords="adolescent", keywords="young adult", keywords="cancer", keywords="mHealth", keywords="smartphone", keywords="survivorship", keywords="quality of life", abstract="Background: Adolescent and young adult (AYA) patients with cancer are a group with underexplored needs throughout treatment and in survivorship. This missing knowledge can influence their quality of life (QoL). Given this fact, we have developed a smartphone app based on a cocreation process and have an investigation of QoL among users planned as part of pilot testing this app. Future research is warranted to determine the effect of mobile health (mHealth) tools such as smartphone apps among the AYA cancer population. Objective: The aim of this study was to investigate the feasibility of a smartphone app among AYA patients with cancer in active treatment and posttreatment, in a pilot test by measuring health-related QoL before and after the use of the app. Methods: Participants were recruited via the youth support initiative and social organization for AYAs with cancer, Kr{\ae}ftv{\ae}rket, based at Rigshospitalet, University Hospital of Copenhagen, Denmark. Participants were evenly distributed in active treatment and posttreatment groups. After written informed consent, all participants were asked to use the app Kr{\ae}ftv{\ae}rket as they deemed appropriate over a 6-week period. The participants were asked to complete the 30-item European Organization for Research and Treatment of Cancer Quality of Life Questionnaire before and after the 6-week period. The collected QoL data were analyzed with t tests to determine differences between groups and from baseline. Results: In total, we enrolled 20 participants, 10 in active treatment and 10 posttreatment (median time after treatment was 4 months) group. Median age of the participants was 25 years. No differences in QoL were seen at baseline (P=.65). The posttreatment group experienced a significant increase in overall QoL after the 6-week period (global QoL: baseline 62.5, SD 22.3; after 6 weeks 80.8, SD 9.7; P=.04). For the group in active treatment, the QoL remained stable throughout the 6 weeks. Conclusions: This study shows the feasibility and possible effect on QoL associated with the use of an mHealth tool in AYA patients. mHealth support tools are warranted for this population. ", doi="10.2196/13829", url="https://mhealth.jmir.org/2019/10/e13829", url="http://www.ncbi.nlm.nih.gov/pubmed/31584008" } @Article{info:doi/10.2196/12071, author="McCann, Lisa and McMillan, Anne Kathryn and Pugh, Gemma", title="Digital Interventions to Support Adolescents and Young Adults With Cancer: Systematic Review", journal="JMIR Cancer", year="2019", month="Jul", day="31", volume="5", number="2", pages="e12071", keywords="adolescent", keywords="neoplasms", keywords="telemedicine", keywords="systematic review", keywords="eHealth", abstract="Background: The last decade has seen an increase in the number of digital health interventions designed to support adolescents and young adults (AYAs) with cancer. Objective: The objective of this review was to identify, characterize, and fully assess the quality, feasibility, and efficacy of existing digital health interventions developed specifically for AYAs, aged between 13 and 39 years, living with or beyond a cancer diagnosis. Methods: Searches were performed in PubMed, EMBASE, and Web of Science to identify digital health interventions designed specifically for AYA living with or beyond a cancer diagnosis. Data on the characteristics and outcomes of each intervention were synthesized. Results: A total of 4731 intervention studies were identified through the searches; 38 interventions (43 research papers) met the inclusion criteria. Most (20/38, 53\%) were website-based interventions. Most studies focused on symptom management and medication adherence (15, 39\%), behavior change (15, 39\%), self-care (8, 21\%), and emotional health (7, 18\%). Most digital health interventions included multiple automated and communicative functions such as enriched information environments, automated follow-up messages, and access to peer support. Where reported (20, 53\% of studies), AYAs' subjective experience of using the digital platform was typically positive. The overall quality of the studies was found to be good (mean Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields scores >68\%). Some studies reported feasibility outcomes (uptake, acceptability, and attrition) but were not sufficiently powered to comment on intervention effects. Conclusions: Numerous digital interventions have been developed and designed to support young people living with and beyond a diagnosis of cancer. However, many of these interventions have yet to be deployed, implemented, and evaluated at scale. ", doi="10.2196/12071", url="http://cancer.jmir.org/2019/2/e12071/", url="http://www.ncbi.nlm.nih.gov/pubmed/31368438" } @Article{info:doi/10.2196/14292, author="Huberty, Jennifer and Eckert, Ryan and Larkey, Linda and Joeman, Lynda and Mesa, Ruben", title="Experiences of Using a Consumer-Based Mobile Meditation App to Improve Fatigue in Myeloproliferative Patients: Qualitative Study", journal="JMIR Cancer", year="2019", month="Jul", day="22", volume="5", number="2", pages="e14292", keywords="mindfulness", keywords="meditation", keywords="mobile phone", keywords="mHealth", keywords="digital health", keywords="cancer", abstract="Background: Myeloproliferative neoplasm (MPN) patients suffer from long-term symptoms and reduced quality of life. Mindfulness meditation is a complementary therapy shown to be beneficial for alleviating a range of cancer-related symptoms; however, in-person meditation interventions are difficult for cancer patients to attend. Meditation via a mobile phone app represents a novel approach in MPN patients for delivering meditation. Objective: The study aimed to report MPN patients' (ie, na{\"i}ve or nearly na{\"i}ve meditators) perceptions of meditation and explore their experiences in the context of using a mobile phone for meditation after participation in an 8-week consumer-based meditation app feasibility study. Methods: MPN patients (n=128) were recruited nationally through organizational partners and social media. Eligible and consented patients were enrolled into 1 of 4 groups, 2 that received varying orders of 2 consumer-based apps (10\% Happier and Calm) and 2 that received one of the apps alone for the second 4 weeks of the 8-week intervention after an educational control condition. Participants were asked to perform 10 min per day of mobile phone-based meditation, irrespective of the app and order in which they received the apps. At the conclusion of the study, participants were asked whether they would like to participate in a 20-min phone interview comprising 9 to 10 questions to discuss their perceptions and experiences while using the mobile phone meditation apps. The interviews were transcribed verbatim and imported into NVivo 12 (QSR International) for coding and analysis, using a combination of deductive and inductive methods to organize the data, generate categories, and develop themes and subthemes. Results: A total of 48 MPN patients completed postintervention interviews, of which 29\% (14/48) of the patients only used the 10\% Happier app, 21\% (10/48) of the patients only used the Calm app, and 46\% (22/48) of the patients used both apps during the 8-week intervention. Themes identified in the analysis of interview data related to (1) perceptions of meditation before, during, and after the study, (2) perceptions of the Calm app, (3) perceptions of the 10\% Happier app, (4) perceived impacts of using the meditation apps, (5) overall experiences of participating in the study, (6) recommendations surrounding meditation for other MPN patients, and (7) plans to continue meditation. Conclusions: The qualitative findings of this study suggest that MPN patients who are na{\"i}ve or nearly na{\"i}ve meditators perceived mobile phone meditation as enjoyable, preferred the Calm app over the 10\% Happier app, perceived the Calm app as more appealing (eg, narrator's voice and different meditations or background sounds offered), and perceived beneficial effects of meditation on mental health, sleep, fatigue, and pain. Future research is needed to better understand the efficacy of mobile phone meditation on MPN patient outcomes and meditation app design features that enhance uptake among its users. ", doi="10.2196/14292", url="http://cancer.jmir.org/2019/2/e14292/", url="http://www.ncbi.nlm.nih.gov/pubmed/31333197" } @Article{info:doi/10.2196/13987, author="Chen, Liang and Yang, Xiaodong and Fu, Lunrui and Liu, Xiaoming and Yuan, Congyi", title="Using the Extended Parallel Process Model to Examine the Nature and Impact of Breast Cancer Prevention Information on Mobile-Based Social Media: Content Analysis", journal="JMIR Mhealth Uhealth", year="2019", month="Jun", day="24", volume="7", number="6", pages="e13987", keywords="breast cancer", keywords="prevention information", keywords="mobile social media", keywords="EPPM", abstract="Background: With the rise of mobile technology, an increasing number of people use mobile-based social media to access health information. Many scholars have explored the nature of health information on social media; however, the impact of such information on people was understudied. Objective: This study aimed to examine the nature and impact of health information on mobile-based social media. Specifically, we investigated how the levels of threat and efficacy of breast cancer prevention information affect individuals' engagement with the information, such as readings and likes. Methods: Breast cancer prevention articles posted on a Chinese mobile-based social media platform (ie, WeChat Subscription Account [WeChat SA]) from January 1 to December 31, 2017, were extracted using the Python Web Crawler. We used content analysis and analysis of covariance to analyze our data. Results: The results revealed that the vast majority of titles and main bodies of the articles involved one of the extended parallel process model components: threat or efficacy. Conclusions: Breast cancer prevention information on WeChat SA was well designed. Both threat and efficacy significantly affected the number of readings, whereas only efficacy had a significant effect on the number of likes. Moreover, breast cancer prevention information that contained both high levels of threat and efficacy gained the largest number of readings and likes. ", doi="10.2196/13987", url="http://mhealth.jmir.org/2019/6/e13987/", url="http://www.ncbi.nlm.nih.gov/pubmed/31237239" } @Article{info:doi/10.2196/12473, author="Fradgley, A. Elizabeth and Boltong, Anna and O'Brien, Lorna and Boyes, W. Allison and Lane, Katherine and Beattie, Annette and Clinton-McHarg, Tara and Jacobsen, B. Paul and Doran, Christopher and Barker, Daniel and Roach, Della and Taylor, Jo and Paul, L. Christine", title="Implementing Systematic Screening and Structured Care for Distressed Callers Using Cancer Council's Telephone Services: Protocol for a Randomized Stepped-Wedge Trial", journal="JMIR Res Protoc", year="2019", month="May", day="16", volume="8", number="5", pages="e12473", keywords="psycho-oncology", keywords="cancer", keywords="psychological stress", keywords="community health services", keywords="telephone hotlines", abstract="Background: Structured distress management, comprised a 2-stage screening and referral model, can direct supportive care resources toward individuals who are most likely to benefit. This structured approach has yet to be trialed in Australian community-based services such as Cancer Council New South Wales (NSW) and Victoria Cancer Information and Support (CIS) 13 11 20 lines who care for a large community of cancer patients and caregivers. Objective: The aim of this study was to evaluate the effectiveness of structured screening and referral in (1) increasing the proportion of distressed CIS callers who accept supportive care referrals and (2) reducing distress levels at 6-month follow-up. Methods: In this stepped-wedge trial, Cancer Council NSW and Victoria CIS consultants are randomized to deliver structured care during inbound 13 11 20 calls in accordance with 3 intervention periods. Eligible callers are patients or caregivers who score 4 or more on the Distress Thermometer; NSW or Victorian residents; aged 18 years or older; and English proficient. Study data are collected via computer-assisted telephone interviews (CATIs) at 3- and 6-month follow-up and CIS record audit. CATIs include demographic and service use items and the General Health Questionnaire (GHQ-28) to assess distress. An economic analysis of the structured care model will be completed. Results: The structured care model was developed by guideline review and identification of service characteristics to guide mapping decisions; place-card methodology; and clinical vignettes with think-aloud methodology to confirm referral appropriateness. The model includes an additional screening tool (Patient Health Questionnaire-4) and a referral model with 16-20 CIS services. Descriptive statistics will be used to assess referral uptake rates. Differences between GHQ-28 scores for structured and usual care callers will be tested using a generalized linear mixed model with fixed effects for intervention and each time period. The trial will recruit 1512 callers. The sample size will provide the study with approximately 80\% power to detect a difference of 0.3 SD in the mean score of the GHQ-28 at an alpha level of .05 and assuming an intra-cluster correlation of .04. A random sample of recorded calls will be reviewed to assess intervention fidelity and contamination. To date, 1835 distressed callers have been invited to participate with 60.71\% (1114/1835) enrolled in the study. A total of 692 participants have completed 6-month CATIs. Recruitment is anticipated to end in late 2019. Conclusions: This trial is among the first to rigorously test the outcomes of a community-based structured approach to distress management. The model is evidence-informed, practice-ready, and trialed in a real-world setting. The study outcomes will advance the understanding of distress management internationally for both patients and caregivers. Trial Registration: Australian New Zealand Clinical Trial Registry ACTRN12617000352303; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=372105\&isReview=true (Archived by WebCite on http://www.webcitation.org/78AW0Ba09) International Registered Report Identifier (IRRID): DERR1-10.2196/12473 ", doi="10.2196/12473", url="http://www.researchprotocols.org/2019/5/e12473/", url="http://www.ncbi.nlm.nih.gov/pubmed/31099341" } @Article{info:doi/10.2196/11406, author="Carr, L. Alaina and Jones, Jacqueline and Mikulich Gilbertson, Susan and Laudenslager, L. Mark and Kutner, S. Jean and Kilbourn, Kristin and Sannes, S. Timothy and Brewer, W. Benjamin and Kolva, Elissa and Joshi, Tanisha and Amoyal Pensak, Nicole", title="Impact of a Mobilized Stress Management Program (Pep-Pal) for Caregivers of Oncology Patients: Mixed-Methods Study", journal="JMIR Cancer", year="2019", month="May", day="03", volume="5", number="1", pages="e11406", keywords="advanced cancer caregivers", keywords="psychoeducation", keywords="mHealth", keywords="cancer", keywords="bone marrow transplantation", keywords="qualitative research", keywords="internet", keywords="randomized controlled trial", keywords="caregivers", keywords="neoplasms", keywords="telemedicine", keywords="clinical trial, phase I", abstract="Background: Caregivers of patients with advanced diseases are known to have high levels of distress, including depression and anxiety. Recent research has focused on recognizing caregivers in need of psychosocial support to help them manage their distress. Evidenced-based technological interventions have the potential to aid caregivers in managing distress. Objective: The objective of our study was to describe caregiver perceptions of the usability and acceptability, and their suggestions for future adaptations, of a mobilized psychoeducation and skills-based intervention. Methods: This study was a part of a larger trial of a mobilized psychoeducation and skills-based intervention (Psychoeducation and Skills-Based Mobilized Intervention [Pep-Pal]) for caregivers of patients with advanced illness. This substudy used a mixed-methods analysis of quantitative data from all 26 intervention participants and qualitative data from 14 intervention caregivers who completed the Pep-Pal intervention. The qualitative semistructured individual interviews, which we conducted within the first 4 weeks after participants completed the intervention, assessed the acceptability and usability of Pep-Pal. Additionally, the qualitative interviews provided contextual evidence of how the intervention was helpful to interviewees in unanticipated ways. We conducted applied thematic analysis via independent review of transcripts to extract salient themes. Results: Overall, caregivers of patients with advanced cancer deemed Pep-Pal to be acceptable in all Web-based sessions except for Improving Intimacy. Caregivers perceived the program to be of use across the areas they needed and in others that they had not anticipated. Caregiver recommendations of key changes for the program were to include more variety in caregiver actors in sessions, change the title of Improving Intimacy to Improving Relationships, provide an audio-only option in addition to video, and change the format of the mobilized website program to a stand-alone mobile app. Conclusions: The valuable feedback in key areas from individual interviews will be integrated into the final version of Pep-Pal that will be tested in a fully powered randomized clinical trial. Trial Registration: ClinicalTrials.gov NCT03002896; https://clinicaltrials.gov/ct2/show/NCT03002896 (Archived by WebCite at http://www.webcitation.org/76eThwaei) ", doi="10.2196/11406", url="http://cancer.jmir.org/2019/1/e11406/", url="http://www.ncbi.nlm.nih.gov/pubmed/31066678" } @Article{info:doi/10.2196/12856, author="Chaix, Benjamin and Bibault, Jean-Emmanuel and Pienkowski, Arthur and Delamon, Guillaume and Guillemass{\'e}, Arthur and Nectoux, Pierre and Brouard, Beno{\^i}t", title="When Chatbots Meet Patients: One-Year Prospective Study of Conversations Between Patients With Breast Cancer and a Chatbot", journal="JMIR Cancer", year="2019", month="May", day="02", volume="5", number="1", pages="e12856", keywords="artificial intelligence", keywords="breast cancer", keywords="mobile phone", keywords="patient-reported outcomes", keywords="symptom management", keywords="chatbot", keywords="conversational agent", abstract="Background: A chatbot is a software that interacts with users by simulating a human conversation through text or voice via smartphones or computers. It could be a solution to follow up with patients during their disease while saving time for health care providers. Objective: The aim of this study was to evaluate one year of conversations between patients with breast cancer and a chatbot. Methods: Wefight Inc designed a chatbot (Vik) to empower patients with breast cancer and their relatives. Vik responds to the fears and concerns of patients with breast cancer using personalized insights through text messages. We conducted a prospective study by analyzing the users' and patients' data, their usage duration, their interest in the various educational contents proposed, and their level of interactivity. Patients were women with breast cancer or under remission. Results: A total of 4737 patients were included. Results showed that an average of 132,970 messages exchanged per month was observed between patients and the chatbot, Vik. Thus, we calculated the average medication adherence rate over 4 weeks by using a prescription reminder function, and we showed that the more the patients used the chatbot, the more adherent they were. Patients regularly left positive comments and recommended Vik to their friends. The overall satisfaction was 93.95\% (900/958). When asked what Vik meant to them and what Vik brought them, 88.00\% (943/958) said that Vik provided them with support and helped them track their treatment effectively. Conclusions: We demonstrated that it is possible to obtain support through a chatbot since Vik improved the medication adherence rate of patients with breast cancer. ", doi="10.2196/12856", url="http://cancer.jmir.org/2019/1/e12856/", url="http://www.ncbi.nlm.nih.gov/pubmed/31045505" } @Article{info:doi/10.2196/cancer.9887, author="Verberne, Suzan and Batenburg, Anika and Sanders, Remco and van Eenbergen, Mies and Das, Enny and Lambooij, S. Mattijs", title="Analyzing Empowerment Processes Among Cancer Patients in an Online Community: A Text Mining Approach", journal="JMIR Cancer", year="2019", month="Apr", day="17", volume="5", number="1", pages="e9887", keywords="cancer", keywords="health communication", keywords="online social networking", keywords="empowerment", keywords="text mining", keywords="machine learning", abstract="Background: Peer-to-peer online support groups and the discussion forums in these groups can help patients by providing opportunities for increasing their empowerment. Most previous research on online empowerment and online social support uses qualitative methods or questionnaires to gain insight into the dynamics of online empowerment processes. Objective: The overall goal of this study was to analyze the presence of the empowerment processes in the online peer-to-peer communication of people affected by cancer, using text mining techniques. Use of these relatively new methods enables us to study social processes such as empowerment on a large scale and with unsolicited data. Methods: The sample consisted of 5534 messages in 1708 threads, written by 2071 users of a forum for cancer patients and their relatives. We labeled the posts in our sample with 2 types of labels: labels referring to empowerment processes and labels denoting psychological processes. The latter were identified using the Linguistic Inquiry and Word Count (LIWC) method. Both groups of labels were automatically assigned to posts. Automatic labeling of the empowerment processes was done by text classifiers trained on a manually labeled subsample. For the automatic labeling of the LIWC categories, we used the Dutch version of the LIWC consisting of a total of 66 word categories that are assigned to text based on occurrences of words in the text. After the automatic labeling with both types of labels, we investigated (1) the relationship between empowerment processes and the intensity of online participation, (2) the relationship between empowerment processes and the LIWC categories, and (3) the differences between patients with different types of cancer. Results: The precision of the automatic labeling was 85.6\%, which we considered to be sufficient for automatically labeling the complete corpus and doing further analyses on the labeled data. Overall, 62.94\% (3482/5532) of the messages contained a narrative, 23.83\% (1318/5532) a question, and 27.49\% (1521/5532) informational support. Emotional support and references to external sources were less frequent. Users with more posts more often referred to an external source and more often provided informational support and emotional support (Kendall $\tau$>0.2; P<.001) and less often shared narratives (Kendall $\tau$=?0.297; P<.001). A number of LIWC categories are significant predictors for the empowerment processes: words expressing assent (ok and yes) and emotional processes (expressions of feelings) are significant positive predictors for emotional support (P=.002). The differences between patients with different types of cancer are small. Conclusions: Empowerment processes are associated with the intensity of online use. The relationship between linguistic analyses and empowerment processes indicates that empowerment processes can be identified from the occurrences of specific linguistic cues denoting psychological processes. ", doi="10.2196/cancer.9887", url="http://cancer.jmir.org/2019/1/e9887/", url="http://www.ncbi.nlm.nih.gov/pubmed/30994468" } @Article{info:doi/10.2196/10921, author="Donovan, Elizabeth and Martin, R. Sarah and Seidman, C. Laura and Zeltzer, K. Lonnie and Cousineau, M. Tara and Payne, A. Laura and Trant, Meredith and Weiman, Marjorie and Knoll, Marla and Federman, C. Noah", title="A Mobile-Based Mindfulness and Social Support Program for Adolescents and Young Adults With Sarcoma: Development and Pilot Testing", journal="JMIR Mhealth Uhealth", year="2019", month="Mar", day="18", volume="7", number="3", pages="e10921", keywords="cancer", keywords="mindfulness", keywords="social support", keywords="mobile app", keywords="adolescents", keywords="young adults", abstract="Background: Approximately 70,000 adolescents and young adults (AYA) are diagnosed with cancer each year in the United States. Sarcomas carry a particularly high symptom burden and are some of the most common cancers among AYA. Recent work has documented significant levels of unmet needs among AYA with cancer, particularly the need for psychosocial support. Mobile technology may be a cost-effective and efficient way to deliver a psychosocial intervention to AYA with cancer and cancer survivors. Objective: The two aims of this study were to (1) develop a pilot version of a mobile-based mindfulness and social support program and (2) evaluate program usage and acceptability. An exploratory aim was to examine change in psychosocial outcomes. Methods: Thirty-seven AYA with sarcoma or sarcoma survivors, parents, and health care providers participated in the study. Semistructured interviews were conducted with 10 AYA, parents of five of the adolescents, and six health care providers. Themes from the interviews helped to inform the development of a mobile-based mindfulness pilot program and a companion Facebook-based social support group. Twenty AYA consented to participate in a single-arm pre-post evaluation of the program; 17 downloaded the app and joined the Facebook group. Seven of these participants had participated in the semistructured interviews. Six additional health care providers consented to participate in the evaluation stage. Results: On average, participants completed 16.9 of the 28 unique sessions and used the mindfulness app for a mean 10.2 (SD 8.2) days during the 28-day evaluation period. The majority of participants (16/17) engaged in the social group and posted at least one reply to the moderator's prompts. The mean number of responses per person to the moderator of the social group was 15.2 of 31 (49\%, range 0\%-97\%). Both AYA and health care providers responded positively to the Mindfulness for Resilience in Illness program and offered useful recommendations for improvements. Exploratory psychosocial analyses indicated there were no significant differences from pretest to posttest on measures of perceived social support, mindfulness, body image, or psychological functioning. Conclusions: This study offers preliminary support for the feasibility and acceptability of a mobile-based mindfulness and Facebook-based social support program for AYA with sarcoma. The feedback from AYA and health care providers will assist in creating a fully developed intervention. Trial Registration: ClinicalTrials.gov NCT03130751; https://clinicaltrials.gov/ct2/show/NCT03130751 ", doi="10.2196/10921", url="http://mhealth.jmir.org/2019/3/e10921/", url="http://www.ncbi.nlm.nih.gov/pubmed/30882352" } @Article{info:doi/10.2196/10883, author="Pearson, E. Stephanie and Taylor, John and Hoare, J. Derek and Patel, Poulam and Baguley, M. David", title="Exploring the Experiences of Cancer Patients With Chemotherapy-Induced Ototoxicity: Qualitative Study Using Online Health Care Forums", journal="JMIR Cancer", year="2019", month="Mar", day="14", volume="5", number="1", pages="e10883", keywords="quality of life", keywords="neoplasms", keywords="drug-related side effects and adverse reactions", keywords="hearing loss", keywords="tinnitus", keywords="online social networking", keywords="internet", keywords="eHealth", keywords="social support", abstract="Background: Many cancer patients and survivors experience permanent and life-debilitating effects, such as ototoxicity, from treatment. Ototoxicity manifests as high-frequency hearing loss and tinnitus, which can have a detrimental effect on the quality of life (QoL) of those affected. Currently, there is little information and support offered to these patients who experience ototoxicity, potentially leading to many being undiagnosed and untreated. Objective: The aim of this study was to explore the extent of ototoxic side effects, such as hearing loss and tinnitus, and their impact on cancer patients following chemotherapy treatment. Secondary objectives included detecting the time periods of onset and duration of the ototoxicity and identifying what support was available to this population. Methods: Posts from publicly available online forums were thematically analyzed using the guidelines by Braun and Clarke. A coding manual was iteratively developed to create a framework for the analysis of the ototoxicity experience among the cancer population. Results: A total of 9 relevant online forums were identified, consisting of 86 threads and 570 posts from 377 members. Following the bottom-up thematic analysis, 6 major themes were identified: nature of ototoxicity, time of experienced ototoxicity, information on ototoxicity, quality of life, therapies, and online social support. Conclusions: There was a significant number of reports expressing concerns about the lack of information on the risk of ototoxicity. More support for those suffering is needed; for example, improved interdepartmental communication between oncology and audiology services could optimize patient care. Patients should also be encouraged to communicate with their health care professionals about their ototoxicity and relay how their QoL is impacted by ototoxicity when accessing support. Tinnitus was the most common concern and was associated with distress. Hearing loss was less common; however, it was associated with fear and employment issues. Those who reported preexisting conditions were fearful about worsening their condition as their QoL was already impacted. ", doi="10.2196/10883", url="http://cancer.jmir.org/2019/1/e10883/", url="http://www.ncbi.nlm.nih.gov/pubmed/30869640" } @Article{info:doi/10.2196/10085, author="Woodford, Joanne and Wikman, Anna and Einhorn, Kim and Cernvall, Martin and Gr{\"o}nqvist, Helena and Romppala, Amanda and von Essen, Louise", title="Attitudes and Preferences Toward a Hypothetical Trial of an Internet-Administered Psychological Intervention for Parents of Children Treated for Cancer: Web-Based Survey", journal="JMIR Ment Health", year="2018", month="Dec", day="18", volume="5", number="4", pages="e10085", keywords="anxiety", keywords="cancer", keywords="clinical trial", keywords="depression", keywords="eHealth", keywords="parents", abstract="Background: Clinical trials are often challenged with issues of recruitment and retention. Little is known concerning general attitudes and preferences toward trial design and willingness to participate among parents of children treated for cancer. Furthermore, willingness to participate in internet-administered psychological interventions remains unexplored. In this study, we examined attitudes and preferences of the population regarding study procedures for a hypothetical trial of an internet-administered psychological intervention. In addition, differences in the response rate between modes of study invitation and willingness to engage in internet-administered interventions were examined. Objective: The primary objective of this study was to examine attitudes and preferences toward participating in an internet-administrated psychological intervention. The secondary objective was to examine the response rates and help-seeking behavior among parents of children treated for cancer. Methods: A cross-sectional, Web-based survey was conducted with parents of children who had completed cancer treatment. This Web-based survey examined self-reported emotional distress, prior help-seeking and receipt of psychological support, past research participation, attitudes toward research, preferences concerning recruitment procedures, and attitudes toward different types of trial design. Results: Of all the parents invited, 32.0\% (112/350) completed the survey, with no difference in response rate between modes of study invitation ($\chi$21=0.6, P=.45). The majority (80/112, 71.4\%) of parents responded that they had experienced past emotional distress. Responses indicated high (56/112, 50.0\%) or somewhat high trust in research (51/112, 45.5\%), and the majority of parents would accept, or maybe accept, internet-administered psychological support if offered (83/112, 74.1\%). In addition, responses showed a preference for postal study invitation letters (86/112, 76.8\%), sent by a researcher (84/112, 75.0\%) with additional study information provided on the Web via text (81/112, 72.3\%) and video (66/112, 58.9\%). Overall, parents responded that trials utilizing a waiting list control, active alternative treatment control, or a patient-preference design were acceptable. Conclusions: Parents of children treated for cancer appear willing to participate in trials examining internet-administered psychological support. Findings of this study will inform the design of a feasibility trial examining internet-administered psychological support for the population. ", doi="10.2196/10085", url="http://mental.jmir.org/2018/4/e10085/", url="http://www.ncbi.nlm.nih.gov/pubmed/30563814" } @Article{info:doi/10.2196/11271, author="Mikolasek, Michael and Witt, M. Claudia and Barth, J{\"u}rgen", title="Adherence to a Mindfulness and Relaxation Self-Care App for Cancer Patients: Mixed-Methods Feasibility Study", journal="JMIR Mhealth Uhealth", year="2018", month="Dec", day="06", volume="6", number="12", pages="e11271", keywords="mobile app", keywords="mindfulness", keywords="relaxation", keywords="cancer", keywords="patient compliance", abstract="Background: Cancer is highly prevalent worldwide and can cause high levels of distress in patients, which is often neglected in medical care. Smartphone apps are readily available and therefore seem promising to deliver distress-reducing interventions such as mindfulness and relaxation programs. Objective: This study aimed to evaluate the feasibility of a mindfulness and relaxation app for cancer patients. We looked at characteristics of participating patients in a mobile health (mHealth) study, including adherence to the app intervention, predictors for adherence, and patients' feedback regarding the app. Methods: In this prospective observational study with a mixed-methods approach, cancer patients received a mindfulness and relaxation self-care app. Cancer patients were recruited online and through hospitals in Switzerland. We assessed self-reported measures (eg, quality of life, anxiety, depressive symptoms, openness to experience, resistance to change) at baseline, and the app gathered data on patients' practicing time. With 8 semistructured interviews, we obtained patients' feedback about the app and recommendations for improvements. We looked at 3 dimensions of the Reach, Effectiveness, Adoption, Implementation, and Maintenance framework (reach, adoption, and maintenance) and analyzed data for adherence for the first 10 weeks of the app intervention. We report descriptive statistics for patient characteristics and app use. For the prediction of adherence, we used Kaplan-Meier analyses with log-rank tests and a Cox proportional hazards regression. Results: Data from 100 cancer patients (74 female) showed that 54 patients were using the app exercises continuously until week 10. In continuous app users, the median number of exercises per week dropped from 4 (interquartile range, IQR 1-7) at week 1 to a median of 2 (IQR 1-4) at week 10. Our analyses revealed 4 significant predictors for better adherence: female gender, higher openness to experience, higher resistance to change, and more depressive symptoms. Interviews revealed that the patients generally were satisfied with the app but also made suggestions on how to improve it. Conclusions: Our study indicates that a mindfulness and relaxation mHealth intervention for cancer patients is feasible with acceptable adherence and largely positive feedback from patients. Trial Registration: German Clinical Trials Register DRKS00010481; https://www.drks.de/drks\_web/navigate.do?navigation Id=trial.HTML\&TRIAL\_ID=DRKS00010481 (Archived by WebCite at?http://www.webcitation.org/73xGE1B0P) ", doi="10.2196/11271", url="https://mhealth.jmir.org/2018/12/e11271/", url="http://www.ncbi.nlm.nih.gov/pubmed/30522990" } @Article{info:doi/10.2196/mhealth.9981, author="Wang, Jingting and Howell, Doris and Shen, Nanping and Geng, Zhaohui and Wu, Fulei and Shen, Min and Zhang, Xiaoyan and Xie, Anwei and Wang, Lin and Yuan, Changrong", title="mHealth Supportive Care Intervention for Parents of Children With Acute Lymphoblastic Leukemia: Quasi-Experimental Pre- and Postdesign Study", journal="JMIR Mhealth Uhealth", year="2018", month="Nov", day="19", volume="6", number="11", pages="e195", keywords="acute lymphoblastic leukemia", keywords="effectiveness", keywords="mHealth", keywords="mobile phone", keywords="parent", keywords="supportive care", abstract="Background: Acute lymphoblastic leukemia (ALL) is the most common childhood malignancy. Caring for children with ALL is challenging for parents. A mobile health (mHealth) supportive care intervention was developed to meet parents' needs. Objective: This study aims to evaluate the potential effectiveness of this mHealth supportive care intervention on emotional distress, social support, care burden, uncertainty in illness, quality of life, and knowledge. Methods: We conducted a quasi-experimental pre- and postdesign study from June 2015 to January 2016. In total, 101 parents were enrolled in the study, with 50 in the observation group and 51 in the intervention group. Parents in the observation group received the standard health education and were observed for 3 months. Parents in the intervention group received the mHealth supportive care intervention, in addition to the standard health education. The intervention consisted of 2 parts---an Android smartphone app ``Care Assistant (CA)'' and a WeChat Official Account. The CA with 8 modules (Personal Information, Treatment Tracking, Family Care, Financial and Social Assistance, Knowledge Center, Self- Assessment Questionnaires, Interactive Platform, and Reminders) was the main intervention tool, whereas the WeChat Official Account was supplementary to update information and realize interaction between parents and health care providers. Data of parents' social support, anxiety, depression, care burden, uncertainty in illness, quality of life, their existing knowledge of ALL and care, and knowledge need were collected before and after the 3-month study period in both groups. For the intervention group, parents' experience of receiving the intervention was also collected through individual interviews. Results: Overall, 43 parents in the observation group and 49 in the intervention group completed the study. Results found that the intervention reduced parents' anxiety (Dint(Post-Pre)=?7.0 [SD 13.1], Dobs(Post-Pre)=?0.4 [SD 15.8], t90=?2.200, P=.03) and uncertainty in illness (Dint(Post-Pre)=?25.0 [SD 8.2], Dobs(Post-Pre)=?19.8 [SD 10.1], t90=?2.761, P=.01), improved parents' social function (Dint(Post-Pre)=9.0 [SD 32.8], Dobs(Post-Pre)=?7.5 [SD 30.3], t90=2.494, P=.01), increased parents' knowledge of ALL and care (Dint(Post-Pre)=28.4 [SD 12.4], Dobs(Post-Pre)=17.2 [SD 11.9], t90=4.407, P<.001), and decreased their need for knowledge (Dint(Post-Pre)=?9.9 [SD 11.6], Dobs(Post-Pre)=?1.9 [SD 6.4], t90=?4.112, P<.001). Qualitative results showed that parents were satisfied with the intervention and their role in the caregiving process. Conclusions: The mHealth intervention in supporting parents of children with ALL is effective. This study is informative for other future studies on providing mHealth supportive care for parents of children with cancer. ", doi="10.2196/mhealth.9981", url="http://mhealth.jmir.org/2018/11/e195/", url="http://www.ncbi.nlm.nih.gov/pubmed/30455166" } @Article{info:doi/10.2196/derma.9734, author="Coups, J. Elliot and Manne, L. Sharon and Pagoto, L. Sherry and Criswell, R. Kevin and Goydos, S. James", title="Facebook Intervention for Young-Onset Melanoma Patients and Their Family Members: Pilot and Feasibility Study", journal="JMIR Dermatol", year="2018", month="Nov", day="01", volume="1", number="2", pages="e3", keywords="young adults with melanoma", keywords="family interventions", keywords="sun protection", keywords="skin surveillance", keywords="skin examination", keywords="social media", keywords="Facebook", abstract="Background: Despite their elevated melanoma risk, young-onset melanoma patients and their families exhibit low rates of engagement in skin cancer surveillance and sun protection behaviors. Interventions that improve skin cancer surveillance (total cutaneous exam [TCE] and skin self-exam [SSE]) and prevention (sun protection) practices among young-onset patients and their family members would likely have an impact on skin cancer morbidity and mortality; however, such interventions are lacking. Objective: The objective of our study was to examine the development, feasibility, and preliminary impact of a family-focused Facebook intervention to increase engagement in TCE, SSE, and sun protection among young-onset melanoma patients and their families. Methods: In this study, 48 young-onset melanoma patients and their 40 family members completed measures of knowledge; beliefs; and TCE, SSE, and sun protection intentions before and 1 month after participating in 1 of 5 separate ``secret'' (ie, private) Facebook groups. The intervention content consisted of daily postings about skin cancer, skin cancer risk factors, TCE, SSE, and sun protection. Results: Patient and family member participation rates differed by recruitment setting, with acceptance rates ranging from 24.6\% to 39.0\% among families recruited from a cancer center setting and from 12.7\% to 61.5\% among families recruited from a state registry. Among the 5 consecutive groups conducted, engagement, as measured by comments and likes in response to postings, increased across the groups. In addition, participants positively evaluated the intervention content and approach. Preliminary analyses indicated increases in TCE, SSE, and sun protection intentions. Conclusions: Our family-focused Facebook intervention showed promise as a potentially feasible and efficacious method to increase sun protection and skin cancer surveillance among individuals at increased risk for melanoma. ", doi="10.2196/derma.9734", url="https://derma.jmir.org/2018/2/e3/" } @Article{info:doi/10.2196/formative.9954, author="B{\o}r{\o}sund, Elin and Mirkovic, Jelena and Clark, M. Matthew and Ehlers, L. Shawna and Andrykowski, A. Michael and Bergland, Anne and Westeng, Marianne and Solberg Nes, Lise", title="A Stress Management App Intervention for Cancer Survivors: Design, Development, and Usability Testing", journal="JMIR Formativ Res", year="2018", month="Sep", day="06", volume="2", number="2", pages="e19", keywords="stress management", keywords="mindfulness", keywords="cancer", keywords="eHealth", keywords="mHealth", keywords="mobile apps", keywords="development", keywords="usability", keywords="user-centered design", keywords="mobile phones", abstract="Background: Distress is prevalent in cancer survivors. Stress management interventions can reduce distress and improve quality of life for cancer patients, but many people with cancer are unfortunately not offered or able to attend such in-person stress management interventions. Objective: The objective of this study was to develop an evidence-based stress management intervention for patients living with cancer that can be delivered electronically with wide reach and dissemination. This paper describes the design and development process of a technology-based stress management intervention for cancer survivors, including the exploration phase, intervention content development, iterative software development (including design, development, and formative evaluation of low- and high-level prototypes), and security and privacy considerations. Methods: Design and development processes were iterative and performed in close collaboration with key stakeholders (N=48). In the exploration phase, identifying needs and requirements for the intervention, 28 participants gave input, including male and female cancer survivors (n=11) representing a wide age range (31-81 years) and cancer diagnoses, healthcare providers (n=8) including psychosocial oncology experts, and eHealth experts (n=9) including information technology design and developers. To ensure user involvement in each phase various user-centered design and service design methods were included, such as interviews, usability testing, and think aloud processes. Overall, participants were involved usability testing in the software development and formative evaluation phase, including cancer survivors (n=6), healthy volunteers (n=7), health care providers (n=2), and eHealth experts (n=5). Intervention content was developed by stress management experts based on well-known cognitive behavioral stress management strategies and adjusted to electronic format through multiple iterations with stakeholders. Privacy and security issues were considered throughout. Results: The design and development process identified a variety of stakeholder requirements. Cancer survivors preferred stress management through a mobile app rather than through a personal computer (PC) and identified usefulness, easy access, user friendliness, use of easily understandable language, and many brief sections rather than longer ones as important components of the intervention. These requirements were also supported by recommendations from health care providers and eHealth experts. The final intervention was named StressProffen and the hospital Privacy and Security Protection Committee was part of the final intervention approval to also ensure anchoring in the hospital organization. Conclusions: Interventions, even evidence-based, have little impact if not actively used. This study illustrates how user-centered design and service design can be applied to identify and incorporate essential stakeholder aspects in the entire design and development process. In combination with evidence-based concepts, this process facilitated development of a stress management intervention truly designed for the end users, in this case, cancer survivors. Trial Registration: ClinicalTrials.gov NCT02939612; https://clinicaltrials.gov/ct2/show/NCT02939612 (Archived at WebCite at http://www.webcitation.org/71l9HcfcB) ", doi="10.2196/formative.9954", url="http://formative.jmir.org/2018/2/e19/", url="http://www.ncbi.nlm.nih.gov/pubmed/30684438" } @Article{info:doi/10.2196/resprot.8886, author="Chalmers, Alexander John and Sansom-Daly, Margaret Ursula and Patterson, Pandora and McCowage, Geoffrey and Anazodo, Antoinette", title="Psychosocial Assessment Using Telehealth in Adolescents and Young Adults With Cancer: A Partially Randomized Patient Preference Pilot Study", journal="JMIR Res Protoc", year="2018", month="Aug", day="29", volume="7", number="8", pages="e168", keywords="telehealth", keywords="videoconferencing", keywords="psychosocial", keywords="psychological assessment", keywords="adolescent and young adult", keywords="cancer", abstract="Background: Adolescent and young adults with cancer are at increased risk of psychosocial difficulties relative to their healthy peers. Current models of inpatient face-to-face psychosocial care might limit the capacity for clinicians to provide timely and personalized assessment and intervention for this group. Telehealth offers a promising alternative toward increasing access to the provision of evidence-based psychosocial assessment and treatment for adolescent and young adults with cancer. Objective: This pilot study aimed to assess the feasibility and acceptability for both patients and clinicians of providing a psychosocial assessment via telehealth to adolescents and young adults currently receiving treatment for cancer, relative to face-to-face delivery. Methods: We included patients who were aged 15-25 years, currently receiving treatment, could speak English well, and medically stable. Patients were recruited from oncology clinics or wards from 5 hospitals located across Sydney and Canberra, Australia, and allocated them to receive psychosocial assessment (Adolescent and Young Adult Oncology Psychosocial Assessment Measure) with a clinical psychologist or social worker through face-to-face or telehealth modalities using a partially randomized patient preference model. Patients completed a pre- and postassessment questionnaire comprising validated and purposely designed feasibility and acceptability indices, including the impact of technical difficulties, if patients had their own devices; number of patients who were content with their group allocation; self-reported preference of modality; Treatment Credibility and Expectations Questionnaire; and Working Alliance Inventory. Clinicians also completed a postassessment questionnaire rating their impressions of the acceptability and feasibility of intervention delivery by each modality. Results: Of 29 patients approached, 23 consented to participate (response rate: 79\%). Participants were partially randomized to either telehealth (8/23, 35\%; mean age 16.50 years, range 15-23 years; females: 4/8, 50\%) or face-to-face (11/23, 62\%; mean age 17 years, range 15-22 years; females: 8/11, 72\%) conditions. Four participants withdrew consent because of logistical or medical complications (attrition rate: 17.4\%). Most participants (6/8, 75\%) in the telehealth group used their computer or iPad (2 were provided with an iPad), with minor technical difficulties occurring in 3 of 8 (37.5\%) assessments. Participants in both groups rated high working alliance (Working Alliance Inventory; median patient response in the telehealth group, 74, range 59-84 and face-to-face group, 63, range 51-84) and reported positive beliefs regarding the credibility and expectations of their treatment group. Postassessment preferences between face-to-face or telehealth modalities varied. Most patients in the telehealth group (5/8, 63\%) reported no preference, whereas 6 of 11 (55\%) in the face-to-face group reported a preference for the face-to-face modality. Conclusions: Telehealth is acceptable as patient comfort was comparable across modalities, with no significant technological barriers experienced. However, patients varied in their preferred interview modality, highlighting the need to tailor the treatment to patient preference and circumstances. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12614001142628; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=366609 (Archived by WebCite at http://www.webcitation.org/721889HpE) ", doi="10.2196/resprot.8886", url="http://www.researchprotocols.org/2018/8/e168/", url="http://www.ncbi.nlm.nih.gov/pubmed/30158103" } @Article{info:doi/10.2196/jmir.9709, author="Hargreaves, Sarah and Bath, A. Peter and Duffin, Suzanne and Ellis, Julie", title="Sharing and Empathy in Digital Spaces: Qualitative Study of Online Health Forums for Breast Cancer and Motor Neuron Disease (Amyotrophic Lateral Sclerosis)", journal="J Med Internet Res", year="2018", month="Jun", day="14", volume="20", number="6", pages="e222", keywords="online health forum", keywords="sharing", keywords="breast cancer", keywords="motor neuron disease", keywords="amyotrophic lateral sclerosis", keywords="empathy", abstract="Background: The availability of an increasing number of online health forums has altered the experience of living with a health condition, as more people are now able to connect and support one another. Empathy is an important component of peer-to-peer support, although little is known about how empathy develops and operates within online health forums. Objective: The aim of this paper is to explore how empathy develops and operates within two online health forums for differing health conditions: breast cancer and motor neuron disease (MND), also known as amyotrophic lateral sclerosis. Methods: This qualitative study analyzed data from two sources: interviews with forum users and downloaded forum posts. Data were collected from two online health forums provided by UK charities: Breast Cancer Care and the Motor Neurone Disease Association. We analyzed 84 threads from the breast cancer forum and 52 from the MND forum. Threads were purposively sampled to reflect varied experiences (eg, illness stages, topics of conversation, and user characteristics). Semistructured interviews were conducted with 14 Breast Cancer Care forum users and five users of the MND forum. All datasets were analyzed thematically using Braun and Clarke's six-phase approach and combined to triangulate the analysis. Results: We found that empathy develops and operates through shared experiences and connections. The development of empathy begins outside the forum with experiences of illness onset and diagnosis, creating emotional and informational needs. Users came to the forum and found their experiences and needs were shared and understood by others, setting the empathetic tone and supportive ethos of the forum. The forum was viewed as both a useful and meaningful space in which they could share experiences, information, and emotions, and receive empathetic support within a supportive and warm atmosphere. Empathy operated through connections formed within this humane space based on similarity, relationships, and shared feelings. Users felt a need to connect to users who they felt were like themselves (eg, people sharing the same specific diagnosis). They formed relationships with other users. They connected based on the emotional understanding of ill health. Within these connections, empathic communication flourished. Conclusions: Empathy develops and operates within shared experiences and connections, enabled by structural possibilities provided by the forums giving users the opportunity and means to interact within public, restricted, and more private spaces, as well as within groups and in one-to-one exchanges. The atmosphere and feeling of both sites and perceived audiences were important facilitators of empathy, with users sharing a perception of virtual communities of caring and supportive people. Our findings are of value to organizations hosting health forums and to health professionals signposting patients to additional sources of support. ", doi="10.2196/jmir.9709", url="http://www.jmir.org/2018/6/e222/", url="http://www.ncbi.nlm.nih.gov/pubmed/29903695" } @Article{info:doi/10.2196/mhealth.9438, author="Zhu, Jiemin and Ebert, Lyn and Liu, Xiangyu and Wei, Di and Chan, Wai-Chi Sally", title="Mobile Breast Cancer e-Support Program for Chinese Women With Breast Cancer Undergoing Chemotherapy (Part 2): Multicenter Randomized Controlled Trial", journal="JMIR Mhealth Uhealth", year="2018", month="Apr", day="30", volume="6", number="4", pages="e104", keywords="breast cancer", keywords="chemotherapy", keywords="mobile app", keywords="self-efficacy", keywords="social support", abstract="Background: Women undergoing chemotherapy for the treatment of breast cancer have frequently reported unmet supportive care needs. Moreover, easily accessible and innovative support is lacking. Objective: The purpose of this trial was to determine the effectiveness of an app-based breast cancer e-support program to address women's self-efficacy (primary outcome), social support, symptom distress, quality of life, anxiety, and depression. Secondary objectives included exploring the association between women's health outcomes and the breast cancer e-support usage data. Methods: A multicenter, single-blinded, randomized controlled trial was conducted. A total of 114 women with breast cancer, who were commencing chemotherapy and were able to access internet through a mobile phone, were recruited in the clinics from 2 university-affiliated hospitals in China. Women were randomized either to the intervention group (n=57) receiving breast cancer e-support plus care as usual or the control group (n=57) receiving care as usual alone. The health care team and research assistants collecting data were blinded to the women's group allocation. Bandura's self-efficacy theory and the social exchange theory guided the development of the breast cancer e-support program, which has 4 components: (1) a Learning forum, (2) a Discussion forum, (3) an Ask-the-Expert forum, and (4) a Personal Stories forum. Moderated by an experienced health care professional, the breast cancer e-support program supported women for 12 weeks covering 4 cycles of chemotherapy. Health outcomes were self-assessed through paper questionnaires in clinics at baseline before randomization (T0), after 3 (T1), and 6 months (T2) of follow-ups. Results: Fifty-five participants in the intervention group and 49 in the control group completed the follow-up assessments (response rate: 91.2\%). During the 12-week intervention, the log-in frequency ranged from 0 to 774 times (mean 54.7; SD 131.4; median 11; interquartile range, IQR 5-27), and the total usage duration ranged from 0 to 9371 min (mean 1072.3; SD 2359.5; median 100; IQR 27-279). Repeated measures multivariate analysis of covariance (intention-to-treat) found that breast cancer e-support + care as usual participants had significant better health outcomes at 3 months regarding self-efficacy (21.05; 95\% CI 1.87-40.22; P=.03; d=0.53), symptom interference (?0.73; 95\% CI ?1.35 to ?.11; P=.02; d=?0.51), and quality of life (6.64; 95\% CI 0.77-12.50; P=.03, d=0.46) but not regarding social support, symptom severity, anxiety, and depression compared with care as usual participants. These beneficial effects were not sustained at 6 months. Spearman rank-order correlation showed that the breast cancer e-support usage duration was positively correlated with self-efficacy (r=.290, P=.03), social support (r=.320, P=.02), and quality of life (r=.273, P=.04) at 3 months. Conclusions: The breast cancer e-support program demonstrated its potential as an effective and easily accessible intervention to promote women's self-efficacy, symptom interference, and quality of life during chemotherapy. Trial Registration: Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12616000639426; www.ANZCTR.org.au/ACTRN12616000639426.aspx (Archived by Webcite at http://www.webcitation.org/6v1n9hGZq) ", doi="10.2196/mhealth.9438", url="http://mhealth.jmir.org/2018/4/e104/", url="http://www.ncbi.nlm.nih.gov/pubmed/29712622" } @Article{info:doi/10.2196/cancer.8918, author="Cockle-Hearne, Jane and Barnett, Deborah and Hicks, James and Simpson, Mhairi and White, Isabel and Faithfull, Sara", title="A Web-Based Intervention to Reduce Distress After Prostate Cancer Treatment: Development and Feasibility of the Getting Down to Coping Program in Two Different Clinical Settings", journal="JMIR Cancer", year="2018", month="Apr", day="30", volume="4", number="1", pages="e8", keywords="prostatic neoplasms", keywords="Internet", keywords="self-management", keywords="cognitive behavior therapy", keywords="primary health care", keywords="secondary care", abstract="Background: Distress after prostate cancer treatment is a substantial burden for up to one-third of men diagnosed. Physical and emotional symptoms and health service use can intensify, yet men are reticent to accept support. To provide accessible support that can be cost effectively integrated into care pathways, we developed a unique, Web-based, self-guided, cognitive-behavior program incorporating filmed and interactive peer support. Objective: To assess feasibility of the intervention among men experiencing distress after prostate cancer treatment. Demand, acceptability, change in distress and self-efficacy, and challenges for implementation in clinical practice were measured. Methods: A pre-post, within-participant comparison, mixed-methods research design was followed. Phase I and II were conducted in primary care psychological service and secondary care cancer service, respectively. Men received clinician-generated postal invitations: phase I, 432 men diagnosed <5 years; phase II, 606 men diagnosed <3.5 years. Consent was Web-based. Men with mild and moderate distress were enrolled. Web-based assessment included demographic, disease, treatment characteristics; distress (General Health Questionnaire-28); depression (Patient Health Questionnaire-9); anxiety (General Anxiety Disorder Scale-7); self-efficacy (Self-Efficacy for Symptom Control Inventory); satisfaction (author-generated, Likert-type questionnaire). Uptake and adherence were assessed with reference to the persuasive systems design model. Telephone interviews explored participant experience (phase II, n=10); interviews with health care professionals (n=3) explored implementation issues. Results: A total of 135 men consented (phase I, 61/432, 14.1\%; phase II, 74/606, 12.2\%); from 96 eligible men screened for distress, 32\% (30/96) entered the intervention (phase I, n=10; phase II, n=20). Twenty-four completed the Web-based program and assessments (phase I, n=8; phase II, n=16). Adherence for phase I and II was module completion rate 63\% (mean 2.5, SD 1.9) versus 92\% (mean 3.7, SD 1.0); rate of completing cognitive behavior therapy exercises 77\% (mean 16.1, SD 6.2) versus 88\% (mean 18.6, SD 3.9). Chat room activity occurred among 63\% (5/8) and 75\% (12/16) of men, respectively. In phase I, 75\% (6/8) of men viewed all the films; in phase II, the total number of unique views weekly was 16, 11, 11, and 10, respectively. The phase II mood diary was completed by 100\% (16/16) of men. Satisfaction was high for the program and films. Limited efficacy testing indicated improvement in distress baseline to post intervention: phase I, P=.03, r=?.55; phase II, P=.001, r=?.59. Self-efficacy improved for coping P=.02, r=?.41. Service assessment confirmed ease of assimilation into clinical practice and clarified health care practitioner roles. Conclusions: The Web-based program is acceptable and innovative in clinical practice. It was endorsed by patients and has potential to positively impact the experience of men with distress after prostate cancer treatment. It can potentially be delivered in a stepped model of psychological support in primary or secondary care. Feasibility evidence is compelling, supporting further evaluative research to determine clinical and cost effectiveness. ", doi="10.2196/cancer.8918", url="http://cancer.jmir.org/2018/1/e8/", url="http://www.ncbi.nlm.nih.gov/pubmed/29712628" } @Article{info:doi/10.2196/jmir.9457, author="Wikman, Anna and Kukkola, Laura and B{\"o}rjesson, Helene and Cernvall, Martin and Woodford, Joanne and Gr{\"o}nqvist, Helena and von Essen, Louise", title="Development of an Internet-Administered Cognitive Behavior Therapy Program (ENGAGE) for Parents of Children Previously Treated for Cancer: Participatory Action Research Approach", journal="J Med Internet Res", year="2018", month="Apr", day="18", volume="20", number="4", pages="e133", keywords="cognitive therapy", keywords="psychology, clinical", keywords="e-therapy", keywords="community participation", keywords="Sweden", abstract="Background: Parenting a child through cancer is a distressing experience, and a subgroup of parents report negative long-term psychological consequences years after treatment completion. However, there is a lack of evidence-based psychological interventions for parents who experience distress in relation to a child's cancer disease after end of treatment. Objective: One aim of this study was to develop an internet-administered, cognitive behavior therapy--based, psychological, guided, self-help intervention (ENGAGE) for parents of children previously treated for cancer. Another aim was to identify acceptable procedures for future feasibility and efficacy studies testing and evaluating the intervention. Methods: Participatory action research methodology was used. The study included face-to-face workshops and related Web-based exercises. A total of 6 parents (4 mothers, 2 fathers) of children previously treated for cancer were involved as parent research partners. Moreover, 2 clinical psychologists were involved as expert research partners. Research partners and research group members worked collaboratively throughout the study. Data were analyzed iteratively using written summaries of the workshops and Web-based exercises parallel to data collection. Results: A 10-week, internet-administered, cognitive behavior therapy--based, psychological, guided, self-help intervention (ENGAGE) was developed in collaboration with parent research partners and expert research partners. The content of the intervention, mode and frequency of e-therapist support, and the individualized approach for feedback were modified based on the research partner input. Shared solutions were reached regarding the type and timing of support from an e-therapist (eg, initial video or telephone call, multiple methods of e-therapist contact), duration and timing of intervention (eg, 10 weeks, 30-min assessments), and the removal of unnecessary support functions (eg, removal of chat and forum functions). Preferences for study procedures in future studies testing and evaluating the intervention were discussed; consensus was not reached for all aspects. Conclusions: To the best of our knowledge, this study is the first use of a participatory action research approach to develop a psychological intervention for parents of children previously treated for cancer and to identify acceptable study procedures. Involvement of parents with lived experience was vital in the development of a potentially relevant and acceptable intervention for this population. ", doi="10.2196/jmir.9457", url="http://www.jmir.org/2018/4/e133/", url="http://www.ncbi.nlm.nih.gov/pubmed/29669710" } @Article{info:doi/10.2196/mhealth.9311, author="Zhu, Jiemin and Ebert, Lyn and Guo, Dongmei and Yang, Sumei and Han, Qiuying and Chan, Wai-Chi Sally", title="Mobile Breast Cancer e-Support Program for Chinese Women With Breast Cancer Undergoing Chemotherapy (Part 1): Qualitative Study of Women's Perceptions", journal="JMIR Mhealth Uhealth", year="2018", month="Apr", day="11", volume="6", number="4", pages="e85", keywords="mobile app", keywords="breast cancer", keywords="chemotherapy", abstract="Background: Women with breast cancer undergoing chemotherapy experience difficulty in accessing adequate cancer care in China. Mobile apps have the potential to provide easily accessible support for these women. However, there remains a paucity of randomized controlled trials to evaluate the effectiveness of app-based programs targeting specifically women with breast cancer undergoing chemotherapy. Moreover, women's perceptions and experiences related to using and interacting within the app-based program have rarely been reported. Therefore, an app-based Breast Cancer e-Support program was developed and evaluated using a randomized controlled trial. Based on the incorporation of Bandura's self-efficacy and social exchange theory, Breast Cancer e-Support program lasted for 12 weeks covering 4 cycles of chemotherapy and had 4 components: (1) a Learning forum, (2) a Discussion forum, (3) an Ask-the-Expert forum, and (4) a Personal Stories forum. Objective: As a part of the randomized controlled trial, the aim of this study was to explore the participants' perception of Breast Cancer e-Support program, its strengths and weaknesses, and suggestions to improve the program. Methods: A descriptive qualitative study was employed. Thirteen women with breast cancer from 2 university-affiliated hospitals in China, who were randomly allocated to the Breast Cancer e-Support program in the randomized controlled trial, were interviewed from November 2016 to February 2017. Purposive sampling was used based on women's scores of self-efficacy after the completion of the intervention. Inductive content analysis was used to analyze the transcripts, allowing the categories and subcategories to flow from the data. Results: The qualitative interviews revealed that participants perceived the Breast Cancer e-Support program to be helpful in enhancing knowledge, improving confidence level, and promoting emotional well-being. Women also identified access to tailored advice from experts and convenience as the benefits of this program. Physical or psychological health status, stigma related with breast cancer, and app instability were mentioned as the challenges to engagement. Suggestions for improvement included adding message reminders to prompt instant communication and search engine to locate information quickly, supplementing more interesting and practical knowledge, updating the information more often, and quickening the responses to women's questions. The participants recommended the Breast Cancer e-Support program to be incorporated as routine care to support women during chemotherapy. Conclusions: This study demonstrates the potential of the Breast Cancer e-Support program to support women during chemotherapy. Future app-based programs should apply a family-centered approach and provide more support on stigma associated with the disease to encourage engagement with the app. Suggestions of improvement regarding the design, content, and operation of the app-based intervention should be addressed in future studies. It is promising to incorporate the Breast Cancer e-Support program into routine care to generalize the benefits. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12616000639426; http://www.ANZCTR.org.au/ ACTRN12616000639426.aspx (Archived by WebCite at http://www.webcitation.org/6v1n9hGZq) ", doi="10.2196/mhealth.9311", url="http://mhealth.jmir.org/2018/4/e85/", url="http://www.ncbi.nlm.nih.gov/pubmed/29643056" } @Article{info:doi/10.2196/jmir.8850, author="Chambers, K. Suzanne and Ritterband, M. Lee and Thorndike, Frances and Nielsen, Lisa and Aitken, F. Joanne and Clutton, Samantha and Scuffham, A. Paul and Youl, Philippa and Morris, Bronwyn and Baade, D. Peter and Dunn, Jeff", title="Web-Delivered Cognitive Behavioral Therapy for Distressed Cancer Patients: Randomized Controlled Trial", journal="J Med Internet Res", year="2018", month="Jan", day="31", volume="20", number="1", pages="e42", keywords="cancer", keywords="mental health", keywords="psychological distress", keywords="randomized controlled trial (RCT)", keywords="health services delivery", abstract="Background: Web-based interventions present a potentially cost-effective approach to supporting self-management for cancer patients; however, further evidence for acceptability and effectiveness is needed. Objective: The goal of our research was to assess the effectiveness of an individualized Web-based cognitive behavioral therapy (CBT) intervention on improving psychological and quality of life outcomes in cancer patients with elevated psychological distress. Methods: A total of 163 distressed cancer patients (111 female, 68.1\%) were recruited through the Queensland Cancer Registry and the Cancer Council Queensland Cancer Helpline and randomly assigned to either a Web-based tailored CBT intervention (CancerCope) (79/163) or a static patient education website (84/163). At baseline and 8-week follow-up we assessed primary outcomes of psychological and cancer-specific distress and unmet psychological supportive care needs and secondary outcomes of positive adjustment and quality of life. Results: Intention-to-treat analyses showed no evidence of a statistically significant intervention effect on primary or secondary outcomes. However, per-protocol analyses found a greater decrease for the CancerCope group in psychological distress (P=.04), cancer-specific distress (P=.02), and unmet psychological care needs (P=.03) from baseline to 8 weeks compared with the patient education group. Younger patients were more likely to complete the CancerCope intervention. Conclusions: This online CBT intervention was associated with greater decreases in distress for those patients who more closely adhered to the program. Given the low costs and high accessibility of this intervention approach, even if only effective for subgroups of patients, the potential impact may be substantial. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12613001026718; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=364768\&isReview=true (Archived by WebCite?at http://www.webcitation.org/6uPvpcovl) ", doi="10.2196/jmir.8850", url="http://www.jmir.org/2018/1/e42/", url="http://www.ncbi.nlm.nih.gov/pubmed/29386173" } @Article{info:doi/10.2196/cancer.8430, author="Kinner, M. Ellen and Armer, S. Jessica and McGregor, A. Bonnie and Duffecy, Jennifer and Leighton, Susan and Corden, E. Marya and Gauthier Mullady, Janine and Penedo, J. Frank and Lutgendorf, K. Susan", title="Internet-Based Group Intervention for Ovarian Cancer Survivors: Feasibility and Preliminary Results", journal="JMIR Cancer", year="2018", month="Jan", day="15", volume="4", number="1", pages="e1", keywords="ovarian cancer", keywords="quality of life", keywords="feasibility studies", keywords="eHealth", keywords="psychological stress", abstract="Background: Development of psychosocial group interventions for ovarian cancer survivors has been limited. Drawing from elements of cognitive-behavioral stress management (CBSM), mindfulness-based stress reduction (MBSR), and acceptance and commitment therapy (ACT), we developed and conducted preliminary testing of an Internet-based group intervention tailored specifically to meet the needs of ovarian cancer survivors. The Internet-based platform facilitated home delivery of the psychosocial intervention to a group of cancer survivors for whom attending face-to-face programs could be difficult given their physical limitations and the small number of ovarian cancer survivors at any one treatment site. Objective: The aim of this study was to develop, optimize, and assess the usability, acceptability, feasibility, and preliminary intended effects of an Internet-based group stress management intervention for ovarian cancer survivors delivered via a tablet or laptop. Methods: In total, 9 ovarian cancer survivors provided feedback during usability testing. Subsequently, 19 survivors participated in 5 waves of field testing of the 10-week group intervention led by 2 psychologists. The group met weekly for 2 hours via an Internet-based videoconference platform. Structured interviews and weekly evaluations were used to elicit feedback on the website and intervention content. Before and after the intervention, measures of mood, quality of life (QOL), perceived stress, sleep, and social support were administered. Paired t tests were used to examine changes in psychosocial measures over time. Results: Usability results indicated that participants (n=9) performed basic tablet functions quickly with no errors and performed website functions easily with a low frequency of errors. In the field trial (n=19), across 5 groups, the 10-week intervention was well attended. Perceived stress (P=.03) and ovarian cancer-specific QOL (P=.01) both improved significantly during the course of the intervention. Trends toward decreased distress (P=.18) and greater physical (P=.05) and functional well-being (P=.06) were also observed. Qualitative interviews revealed that the most common obstacles participants experienced were technical issues and the time commitment for practicing the techniques taught in the program. Participants reported that the intervention helped them to overcome a sense of isolation and that they appreciated the ability to participate at home. Conclusions: An Internet-based group intervention tailored specifically for ovarian cancer survivors is highly usable and acceptable with moderate levels of feasibility. Preliminary psychosocial outcomes indicate decreases in perceived stress and improvements in ovarian cancer-specific QOL following the intervention. A randomized clinical trial is needed to demonstrate the efficacy of this promising intervention for ovarian cancer survivors. ", doi="10.2196/cancer.8430", url="http://cancer.jmir.org/2018/1/e1/", url="http://www.ncbi.nlm.nih.gov/pubmed/29335233" } @Article{info:doi/10.2196/cancer.7973, author="Ringwald, Johanna and Marwedel, Lennart and Junne, Florian and Ziser, Katrin and Sch{\"a}ffeler, Norbert and Gerstner, Lena and Wallwiener, Markus and Brucker, Yvonne Sara and Hautzinger, Martin and Zipfel, Stephan and Teufel, Martin", title="Demands and Needs for Psycho-Oncological eHealth Interventions in Women With Cancer: Cross-Sectional Study", journal="JMIR Cancer", year="2017", month="Nov", day="24", volume="3", number="2", pages="e19", keywords="cancer, oncology, eHealth", keywords="Internet", keywords="needs", keywords="Web-based interventions", abstract="Background: Over the last decade, a growing body of studies regarding the application of eHealth and various digital interventions has been published and are widely used in the psycho-oncological care. However, the effectiveness of eHealth applications in psycho-oncological care is still questioned due to missing considerations regarding evidence-based studies on the demands and needs in cancer-affected patients. Objective: This cross-sectional study aimed to explore the cancer-affected women's needs and wishes for psycho-oncological content topics in eHealth applications and whether women with cancer differ in their content topics and eHealth preferences regarding their experienced psychological burden. Methods: Patients were recruited via an electronic online survey through social media, special patient Internet platforms, and patient networks (both inpatients and outpatients, University Hospital Tuebingen, Germany). Participant demographics, preferences for eHealth and psycho-oncological content topics, and their experienced psychological burden of distress, quality of life, and need for psychosocial support were evaluated. Results: Of the 1172 patients who responded, 716 were included in the study. The highest preference for psycho-oncological content topics reached anxiety, ability to cope, quality of life, depressive feelings, and adjustment toward a new life situation. eHealth applications such as Web-based applications, websites, blogs, info email, and consultation hotline were considered to be suitable to convey these content topics. Psychological burden did not influence the preference rates according to psycho-oncological content and eHealth applications. Conclusions: Psycho-oncological eHealth applications may be very beneficial for women with cancer, especially when they address psycho-oncological content topics like anxiety, ability to cope, depressive feelings, self-esteem, or adjustment to a new life situation. The findings of this study indicate that psycho-oncological eHealth applications are a promising medium to improve the psychosocial care and enhance individual disease management and engagement among women with cancer. ", doi="10.2196/cancer.7973", url="http://cancer.jmir.org/2017/2/e19/", url="http://www.ncbi.nlm.nih.gov/pubmed/29175813" } @Article{info:doi/10.2196/jmir.7079, author="Oerlemans, Simone and Arts, P. Lindy and Horevoorts, J. Nicole and van de Poll-Franse, V. Lonneke", title="``Am I normal?'' The Wishes of Patients With Lymphoma to Compare Their Patient-Reported Outcomes With Those of Their Peers", journal="J Med Internet Res", year="2017", month="Aug", day="15", volume="19", number="8", pages="e288", keywords="lymphoma", keywords="health-related quality of life", keywords="personalized feedback", keywords="self-care", keywords="access to information", keywords="population-based research", abstract="Background: Providing feedback to patients on their patient-reported outcomes (PROs) can help patients in monitoring their functioning and symptoms and may help empower them. Objective: The objective of this study was to investigate whether patients with lymphoma wished to receive PRO feedback, including the option to compare their scores with those of their peers, and how this feedback was evaluated. Methods: We invited 64 patients participating in a lymphoma cohort who were eligible for a follow-up questionnaire and gave them the option to receive PRO feedback. Patients completed questions about health-related quality of life (HRQoL) and symptoms. PRO feedback was provided via bar charts. Results: Of the 64 invited patients, 45 participated (response rate 70\%) and 36 of those (80\%) wished to receive PRO feedback. The vast majority (34/36, 94\%) compared their scores with those of a lymphoma reference cohort, and 64\% (23/36) compared their score with those of a normative population without cancer. All patients wished to receive feedback on their HRQoL, and 29 (81\%) to 33 (92\%) wanted feedback on their functioning, fatigue, neuropathy, anxiety, and depressive symptoms. Of the 36 participants wishing to receive PRO feedback, 35 (97\%) viewed it as being useful, with reassurance and knowledge about their own functioning in relation to what is ``normal'' being the most frequently mentioned reasons. Conclusions: A high number of patients with lymphoma wished to receive PRO feedback. Patients reported the comparison of their scores versus a lymphoma reference cohort as most valuable. Further research should investigate whether PRO feedback could increase empowerment and possibly improve HRQoL. ", doi="10.2196/jmir.7079", url="http://www.jmir.org/2017/8/e288/", url="http://www.ncbi.nlm.nih.gov/pubmed/28811271" } @Article{info:doi/10.2196/jmir.6852, author="Cernvall, Martin and Carlbring, Per and Wikman, Anna and Ljungman, Lisa and Ljungman, Gustaf and von Essen, Louise", title="Twelve-Month Follow-Up of a Randomized Controlled Trial of Internet-Based Guided Self-Help for Parents of Children on Cancer Treatment", journal="J Med Internet Res", year="2017", month="Jul", day="27", volume="19", number="7", pages="e273", keywords="cancer", keywords="parents", keywords="Internet", keywords="PTSS", keywords="depression", keywords="anxiety", keywords="clinical trial", abstract="Background: A substantial proportion of parents of children on cancer treatment report psychological distress such as symptoms of post-traumatic stress (PTSS), depression, and anxiety. During their child's treatment many parents also experience an economic burden. Objective: The aim of this study was to evaluate the long-term efficacy of Internet-based guided self-help for parents of children on cancer treatment. Methods: This study was a parallel randomized controlled trial comparing a 10-week Internet-based guided self-help program, including weekly support from a therapist via encrypted email, with a wait-list control condition. The intervention was based on cognitive behavior therapy (CBT) and focused on psychoeducation and skills to cope with difficult thoughts and feelings. Primary outcome was self-reported PTSS. Secondary outcomes were self-reported symptoms of depression, anxiety, health care consumption, and sick leave during the past month. Outcomes were assessed pre- and postintervention and at 12-month follow-up. Parents of children on cancer treatment were invited by health care personnel at pediatric oncology centers, and parents meeting the modified symptom criteria on the PCL-C were included in the study. Self-report assessments were provided on the Web. Results: A total of 58 parents of children on cancer treatment (median months since diagnosis=3) were included in the study (intervention n=31 and control n=27). A total of 18 participants completed the intervention, and 16 participants in each group participated in the 12-month follow-up. Intention-to-treat analyses revealed significant effects in favor of the intervention on the primary outcome PTSS, with large between-group effect sizes at postassessment (d=0.89; 95\% CI 0.35-1.43) and at 12-month follow-up (d=0.78; 95\% CI 0.25-1.32). Significant effects in favor of the intervention on the secondary outcomes depression and anxiety were also observed. However, there was no evidence for intervention efficacy on health care consumption or sick leave. Conclusions: Using the Internet to provide psychological interventions shows promise as an effective mode of delivery for parents reporting an increased level of PTSS and who consider Internet-based interventions as a viable option. Future research should corroborate these findings and also develop and evaluate interventions and policies that may help ameliorate the economic burden that parents may face during their child's treatment for cancer. ", doi="10.2196/jmir.6852", url="http://www.jmir.org/2017/7/e273/", url="http://www.ncbi.nlm.nih.gov/pubmed/28751300" } @Article{info:doi/10.2196/jmir.6834, author="Wang, Xi and Zhao, Kang and Street, Nick", title="Analyzing and Predicting User Participations in Online Health Communities: A Social Support Perspective", journal="J Med Internet Res", year="2017", month="Apr", day="24", volume="19", number="4", pages="e130", keywords="social support", keywords="machine learning", keywords="community networks", keywords="patient engagement", keywords="prediction", abstract="Background: Online health communities (OHCs) have become a major source of social support for people with health problems. Members of OHCs interact online with similar peers to seek, receive, and provide different types of social support, such as informational support, emotional support, and companionship. As active participations in an OHC are beneficial to both the OHC and its users, it is important to understand factors related to users' participations and predict user churn for user retention efforts. Objective: This study aimed to analyze OHC users' Web-based interactions, reveal which types of social support activities are related to users' participation, and predict whether and when a user will churn from the OHC. Methods: We collected a large-scale dataset from a popular OHC for cancer survivors. We used text mining techniques to decide what kinds of social support each post contained. We illustrated how we built text classifiers for 5 different social support categories: seeking informational support (SIS), providing informational support (PIS), seeking emotional support (SES), providing emotional support (PES), and companionship (COM). We conducted survival analysis to identify types of social support related to users' continued participation. Using supervised machine learning methods, we developed a predictive model for user churn. Results: Users' behaviors to PIS, SES, and COM had hazard ratios significantly lower than 1 (0.948, 0.972, and 0.919, respectively) and were indicative of continued participations in the OHC. The churn prediction model based on social support activities offers accurate predictions on whether and when a user will leave the OHC. Conclusions: Detecting different types of social support activities via text mining contributes to better understanding and prediction of users' participations in an OHC. The outcome of this study can help the management and design of a sustainable OHC via more proactive and effective user retention strategies. ", doi="10.2196/jmir.6834", url="http://www.jmir.org/2017/4/e130/", url="http://www.ncbi.nlm.nih.gov/pubmed/28438725" } @Article{info:doi/10.2196/jmir.7087, author="Lu, Yingjie and Wu, Yang and Liu, Jingfang and Li, Jia and Zhang, Pengzhu", title="Understanding Health Care Social Media Use From Different Stakeholder Perspectives: A Content Analysis of an Online Health Community", journal="J Med Internet Res", year="2017", month="Apr", day="07", volume="19", number="4", pages="e109", keywords="health care social media", keywords="stakeholder analysis", keywords="topic analysis", keywords="sentiment analysis", abstract="Background: Health care social media used for health information exchange and emotional communication involves different types of users, including patients, caregivers, and health professionals. However, it is difficult to identify different stakeholders because user identification data are lacking due to privacy protection and proprietary interests. Therefore, identifying the concerns of different stakeholders and how they use health care social media when confronted with huge amounts of health-related messages posted by users is a critical problem. Objective: We aimed to develop a new content analysis method using text mining techniques applied in health care social media to (1) identify different health care stakeholders, (2) determine hot topics of concern, and (3) measure sentiment expression by different stakeholders. Methods: We collected 138,161 messages posted by 39,606 members in lung cancer, diabetes, and breast cancer forums in the online community MedHelp.org over 10 years (January 2007 to October 2016) as experimental data. We used text mining techniques to process text data to identify different stakeholders and determine health-related hot topics, and then analyzed sentiment expression. Results: We identified 3 significantly different stakeholder groups using expectation maximization clustering (3 performance metrics: Rand=0.802, Jaccard=0.393, Fowlkes-Mallows=0.537; P<.001), in which patients (24,429/39,606, 61.68\%) and caregivers (12,232/39,606, 30.88\%) represented the majority of the population, in contrast to specialists (2945/39,606, 7.43\%). We identified 5 significantly different health-related topics: symptom, examination, drug, procedure, and complication (Rand=0.783, Jaccard=0.369, Fowlkes-Mallows=0.495; P<.001). Patients were concerned most about symptom topics related to lung cancer (536/1657, 32.34\%), drug topics related to diabetes (1883/5904, 31.89\%), and examination topics related to breast cancer (8728/23,934, 36.47\%). By comparison, caregivers were more concerned about drug topics related to lung cancer (300/2721, 11.03\% vs 109/1657, 6.58\%), procedure topics related to breast cancer (3952/13,954, 28.32\% vs 5822/23,934, 24.33\%), and complication topics (4449/25,701, 17.31\% vs 4070/31,495, 12.92\%). In addition, patients (9040/36,081, 25.05\%) were more likely than caregivers (2659/18,470, 14.39\%) and specialists (17,943/83,610, 21.46\%) to express their emotions. However, patients' sentiment intensity score (2.46) was lower than those of caregivers (4.66) and specialists (5.14). In particular, for caregivers, negative sentiment scores were higher than positive scores (2.56 vs 2.18), with the opposite among specialists (2.62 vs 2.46). Overall, the proportion of negative messages was greater than that of positive messages related to symptom, complication, and examination. The pattern was opposite for drug and procedure topics. A trend analysis showed that patients and caregivers gradually changed their emotional state in a positive direction. Conclusions: The hot topics of interest and sentiment expression differed significantly among different stakeholders in different disease forums. These findings could help improve social media services to facilitate diverse stakeholder engagement for health information sharing and social interaction more effectively. ", doi="10.2196/jmir.7087", url="http://www.jmir.org/2017/4/e109/", url="http://www.ncbi.nlm.nih.gov/pubmed/28389418" } @Article{info:doi/10.2196/resprot.6597, author="Pugh, Gemma and McCann, Lisa", title="Assessing the Quality, Feasibility, and Efficacy of Electronic Patient Platforms Designed to Support Adolescents and Young Adults With Cancer: A Systematic Review Protocol", journal="JMIR Res Protoc", year="2017", month="Jan", day="17", volume="6", number="1", pages="e4", keywords="adolescent", keywords="neoplasms", keywords="telemedicine", keywords="review", abstract="Background: A range of innovative websites, mobile technologies, eHealth and mHealth platforms have emerged to support adolescents and young adults (AYAs) with cancer. Previous reviews have identified these various applications and solutions, but no review has summarized the quality, feasibility, and efficacy of existing patient platforms (inclusive of websites, mobile technologies, mHealth and eHealth platforms) developed specifically for young people with cancer. Objective: This paper describes the design of a protocol to conduct a review of published studies or reports which describe or report on an existing platform designed specifically for AYAs who have had a cancer diagnosis. Methods: A search string was developed using a variety of key words and Medical Subject Heading and applied to bibliographic databases. General data (sample characteristics, patient platform development, design and, if applicable, pilot testing outcomes) will be extracted from reports and studies. Drawing on a previously developed coding schematic, the identified patient platforms will be coded for mode of delivery into (1) automated functions, (2) communicative functions, and (3) use of supplementary modes. An adapted version of the Mobile App Rating Scale (MARS) will be used to assess the of quality of each identified patient platform. The methodological quality of included studies will be assessed using the Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields (QualSyst). Both authors will independently screen eligible studies for final inclusion and will both be responsible for data extraction and appraisal. Data will be synthesized narratively to provide an overview of identified patient platforms. Results: The review began in October 2016 and is currently in progress. The review paper will be submitted for peer-review and publication in the summer of 2017. Conclusions: This review will be unique in its focus on assessing, where possible, the quality and efficacy of patient platforms for adolescents and young adults diagnosed with cancer. Results generated from this review will provide an invaluable insight into the utility of modern technology in supporting young people with cancer. ", doi="10.2196/resprot.6597", url="http://www.researchprotocols.org/2017/1/e4/", url="http://www.ncbi.nlm.nih.gov/pubmed/28096067" } @Article{info:doi/10.2196/cancer.5367, author="Ruckenstuhl, Paul and Schippinger, Michael and Liebmann, Paul and Leithner, Andreas and Bernhardt, Gerwin", title="Like or Dislike? Impact of Facebook on Ewing Sarcoma Treatment", journal="JMIR Cancer", year="2016", month="Aug", day="25", volume="2", number="2", pages="e11", keywords="social media", keywords="Facebook", keywords="Ewing sarcoma", keywords="social media networking", abstract="Background: An increasing number of patients are raising their voices in online forums to exchange health-related information. Facebook is the leading social media platform with more than 1 billion international daily users recorded in the summer of 2015. Facebook has a dynamic audience and is utilized in a number of ways, discussing medical issues being one of them. Ewing sarcoma mainly affects teenagers and young adults. Additionally, many individuals within this age group are regular users of Facebook. However, little is known about the impact of this modern way of communication via Web-based platforms on patients with Ewing sarcoma and their social environment. Objective: The aim of this study was to analyze and compare Ewing sarcoma patients' and relatives' behavior on Facebook to draw conclusions regarding the impact of Facebook on Ewing sarcoma treatment. Methods: We examined a Facebook group named ``Ewing Sarcoma Awareness'' that is used to exchange information for both patients and relatives regarding Ewing sarcoma. A self-designed questionnaire was used to compare patients' and relatives' answers. Additionally, we analyzed all processes (posts, likes, threads, links) in the group for 6 consecutive months. A total of 65 members of the Facebook group (26 patients, 39 relatives) out of 2227 international group members participated in our study. Results: More than 70\% (46/65) of all participants reported that they use the group Ewing Sarcoma Awareness as a source of information about Ewing sarcoma. Of the participants, 89\% (58/65) agreed on our scale from a little to a lot that being in contact with other affected people through the group makes it easier to handle the diagnosis. In this study, 20\% (13/65) of all participants reported that the group affected their choice of treatment and 15\% (10/65) of participants were influenced in the selection of their specialist. Regarding the recommendation of the Facebook group toward other people, significant differences (P=.003) were found comparing patients' and relatives' results. During the last 6 months most activities in the group concerned sharing destiny and handling the diagnosis. Conclusions: The Facebook group Ewing Sarcoma Awareness has a relevant impact on group members regarding their choice of treatment. Moreover, participants turn toward the group to receive mental and emotional support in everyday life. Statements made within the group are in part questionable from a medical point of view and the impact made by these statements on patients' care requires further evaluation. ", doi="10.2196/cancer.5367", url="http://cancer.jmir.org/2016/2/e11/", url="http://www.ncbi.nlm.nih.gov/pubmed/28410188" } @Article{info:doi/10.2196/jmir.5975, author="Kanera, Maria Iris and Willems, A. Roy and Bolman, W. Catherine A. and Mesters, Ilse and Zambon, Victor and Gijsen, CM Brigitte and Lechner, Lilian", title="Use and Appreciation of a Tailored Self-Management eHealth Intervention for Early Cancer Survivors: Process Evaluation of a Randomized Controlled Trial", journal="J Med Internet Res", year="2016", month="Aug", day="23", volume="18", number="8", pages="e229", keywords="eHealth", keywords="web-based intervention", keywords="computer tailoring", keywords="cancer survivorship", keywords="intervention usage", keywords="appreciation", keywords="multiple behavior intervention", keywords="process evaluation", keywords="self-management", abstract="Background: A fully automated computer-tailored Web-based self-management intervention, Kanker Nazorg Wijzer (KNW [Cancer Aftercare Guide]), was developed to support early cancer survivors to adequately cope with psychosocial complaints and to promote a healthy lifestyle. The KNW self-management training modules target the following topics: return to work, fatigue, anxiety and depression, relationships, physical activity, diet, and smoking cessation. Participants were guided to relevant modules by personalized module referral advice that was based on participants' current complaints and identified needs. Objective: The aim of this study was to evaluate the adherence to the module referral advice, examine the KNW module use and its predictors, and describe the appreciation of the KNW and its predictors. Additionally, we explored predictors of personal relevance. Methods: This process evaluation was conducted as part of a randomized controlled trial. Early cancer survivors with various types of cancer were recruited from 21 Dutch hospitals. Data from online self-report questionnaires and logging data were analyzed from participants allocated to the intervention condition. Chi-square tests were applied to assess the adherence to the module referral advice, negative binominal regression analysis was used to identify predictors of module use, multiple linear regression analysis was applied to identify predictors of the appreciation, and ordered logistic regression analysis was conducted to explore possible predictors of perceived personal relevance. Results: From the respondents (N=231; mean age 55.6, SD 11.5; 79.2\% female [183/231]), 98.3\% (227/231) were referred to one or more KNW modules (mean 2.9, SD 1.5), and 85.7\% (198/231) of participants visited at least one module (mean 2.1, SD 1.6). Significant positive associations were found between the referral to specific modules (range 1-7) and the use of corresponding modules. The likelihoods of visiting modules were higher when respondents were referred to those modules by the module referral advice. Predictors of visiting a higher number of modules were a higher number of referrals by the module referral advice ($\beta$=.136, P=.009), and having a partner was significantly related with a lower number of modules used ($\beta$=-.256, P=.044). Overall appreciation was high (mean 7.5, SD 1.2; scale 1-10) and was significantly predicted by a higher perceived personal relevance ($\beta$=.623, P=.000). None of the demographic and cancer-related characteristics significantly predicted the perceived personal relevance. Conclusions: The KNW in general and more specifically the KNW modules were well used and highly appreciated by early cancer survivors. Indications were found that the module referral advice might be a meaningful intervention component to guide the users in following a preferred selection of modules. These results indicate that the fully automated Web-based KNW provides personal relevant and valuable information and support for early cancer survivors. Therefore, this intervention can complement usual cancer aftercare and may serve as a first step in a stepped-care approach. Trial Registration: Nederlands Trial Register: NTR3375; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=3375 (Archived by WebCite at http://www.webcitation.org/6jo4jO7kb) ", doi="10.2196/jmir.5975", url="http://www.jmir.org/2016/8/e229/", url="http://www.ncbi.nlm.nih.gov/pubmed/27554525" } @Article{info:doi/10.2196/cancer.5785, author="An, C. Lawrence and Wallner, Lauren and Kirch, Alexander Matthias", title="Online Social Engagement by Cancer Patients: A Clinic-Based Patient Survey", journal="JMIR Cancer", year="2016", month="Aug", day="19", volume="2", number="2", pages="e10", keywords="cancer patients", keywords="Internet", keywords="information", keywords="social support", abstract="Background: The Internet is commonly used as a source of health information, but little is known about the Internet practices specific to cancer patients. Objective: To understand cancer patients' use of the Internet as an informational resource and for social support. Methods: The researchers conducted a survey of 1282 patients at a comprehensive cancer center to assess frequency of Internet access and online behaviors. Results: Of the cancer patients surveyed, 1096 (85.49\%) had Internet access; of those with Internet access, 953 (86.95\%) reported going online at least weekly, and 747 (68.16\%) reported daily online activity. Grouping Internet users by their level of online social engagement revealed that out of 1096 users, 331 (30.20\%) had not sought out social connections online, 227 (20.71\%) had read about experiences from other cancer patients, 410 (37.41\%) had also written about their personal experiences, and 128 (11.68\%) had participated in a formal online group for cancer patients. Increased online social engagement was associated with an increased perception that the Internet was useful for social support. Conclusions: Internet use among cancer patients was common, and most patients reported that they found useful information about their cancer diagnosis online. Cancer patients who actively posted or shared content perceived more social support from the Internet than those who used the Internet solely as an informational resource or to read about other cancer patients' experiences. Physicians have a great opportunity to direct users to quality health information on the Web. ", doi="10.2196/cancer.5785", url="http://cancer.jmir.org/2016/2/e10/", url="http://www.ncbi.nlm.nih.gov/pubmed/28410186" } @Article{info:doi/10.2196/cancer.5108, author="Ginossar, Tamar", title="Predictors of Online Cancer Prevention Information Seeking Among Patients and Caregivers Across the Digital Divide: A Cross-Sectional, Correlational Study", journal="JMIR Cancer", year="2016", month="Mar", day="09", volume="2", number="1", pages="e2", keywords="digital divide", keywords="Internet, information seeking behavior", keywords="minority health", abstract="Background: The digital divide is a recognized public health problem caused by social determinants that exacerbate health disparities. Despite the ``tectonic shift'' in how most of the public obtains cancer information, underserved communities are at increased risk of being digitally marginalized. However, research that examines factors underlying eHealth information seeking in diverse health contexts is lacking. Objective: The aim of this paper is to explore preferences and use of eHealth cancer prevention information (CPI) among patients and caregivers attending a minority-serving oncology clinic using the comprehensive model of information seeking as a theoretical framework. Specifically, the study examined the role of social determinants and prevention orientation in differences in preference and use of the Internet for CPI seeking among this diverse sample. Methods: Survey methodology was used to identify social determinants and behavioral factors, including prevention orientation as correlates and predictors of respondents' (n=252) preferences and use of eHealth for CPI seeking. Results: Less than half (112/252, 44.4\%) of respondents said that if faced with the need to seek CPI, they would seek this information online. In the final logistic regression model, education, ethnicity, age, and prevention orientation made significant contributions to the model (P<.05). Specifically, for each year increase in age, participants were 3\% less likely to use the Internet for CPI seeking (P=.011). Compared to college graduates, respondents who did not complete high school were 11.75 times less likely to cite the Internet as a CPI carrier (P<.001) and those with a high school education were 3 times (2.99, P=.015) less likely. In addition, the odds that a Spanish speaker would cite the Internet as a CPI carrier were one-fifth (22\%) of non-Hispanic whites (P=.032) and about one-quarter (26\%) of English-speaking Latinos (P=.036). Finally, with each one point increase on the prevention orientation scale, respondents were 1.83 times less likely to cite online CPI seeking (P=.05). Conclusions: Social determinants to health have profound influence on eHealth CPI seeking. Providers and policy makers should focus on meeting patients and family members' CPI needs following diagnosis and increase eHealth accessibility and availability of evidence-based CPI to diverse populations. Future research is needed to unravel further differences in eHealth CPI seeking, including those among Native Americans that emerged as an additional digitally underserved racial/ethnic group. Finally, additional factors underlying these differences should be explored to better tailor CPI eHealth information to diverse communities' information needs. ", doi="10.2196/cancer.5108", url="http://cancer.jmir.org/2016/1/e2/", url="http://www.ncbi.nlm.nih.gov/pubmed/28410177" } @Article{info:doi/10.2196/resprot.5055, author="Hauken, Aaseb{\o} May and Senneseth, Mette and Dyregrov, Atle and Dyregrov, Kari", title="Optimizing Social Network Support to Families Living With Parental Cancer: Research Protocol for the Cancer-PEPSONE Study", journal="JMIR Res Protoc", year="2015", month="Dec", day="30", volume="4", number="4", pages="e142", keywords="randomized controlled trial", keywords="parental cancer", keywords="children", keywords="social support", keywords="psycho-education", keywords="quality of life", keywords="mental health", abstract="Background: Parental cancer can have a significant impact on a family's psychosocial functioning and quality of life, whereby the children's situation is strongly related to parental coping and capacity. Such parents ask for more help in order to increase their care capacity, while the network is often insecure about how to help and thereby withdraw. They ask for guidance and training to be able to support cancer families. Based on this, the Cancer- Psycho-Educational Program for the SOcial NEtwork (PEPSONE) study was developed. Objective: To optimize social network support through a psycho-educational program for families living with parental cancer and their network members in order to increase parental capacity and thereby secure the children's safety and quality of life. Methods: A randomized controlled trial (RCT) in which families (N=60) living with parental cancer will be randomized to either an intervention group or a control group. The intervention will last for 3 hours and includes (1) introduction, (2) psycho-education (living with cancer in the family and the importance of social network support), and (3) discussion (this family's need for social support). Primary outcomes are social support, mental health, and quality of life, and secondary outcomes are resilience and parental capacity. Data will be collected by a set of questionnaires distributed to healthy parents (N=60) living with a partner with cancer, one child in the family between 8-18 years of age (N=60), and network members (N=210) of the intervention families at inclusion, and after 3 and 6 months. Comparing differences between the intervention group (n=30) and the control group (n=30), the power analysis shows that P<.05 and a statistical power = .80 would detect effect sizes of clinical interest. Results: This paper presents the Cancer-PEPSON study's protocol to provide a broader understanding of the background and content of the program. The study is ongoing until August 2016 and the first results are anticipated to be finished by November 2015. Conclusions: To our knowledge, this will be the first RCT study to optimize social network support through a psycho-educational program for families living with parental cancer and their network members, as well as provide an evidence basis for social network support. The results may provide important knowledge that is useful for clinical practice and further research. The trial is reported according to the CONSORT checklist. ClinicalTrial: International Standard Randomized Controlled Trial Number (ISRCTN): 15982171; http://www.controlled-trials.com/ISRCTN15982171/15982171 (Archived by WebCite at http://www.webcitation.org/6cg9zunS0) ", doi="10.2196/resprot.5055", url="http://www.researchprotocols.org/2015/4/e142/", url="http://www.ncbi.nlm.nih.gov/pubmed/26733339" } @Article{info:doi/10.2196/cancer.4631, author="K{\"o}hle, Nadine and Drossaert, HC Constance and Oosterik, Suzan and Schreurs, MG Karlein and Hagedoorn, Mari{\"e}t and van Uden-Kraan, F. Cornelia and Verdonck-de Leeuw, M. Irma and Bohlmeijer, T. Ernst", title="Needs and Preferences of Partners of Cancer Patients Regarding a Web-Based Psychological Intervention: A Qualitative Study", journal="JMIR Cancer", year="2015", month="Dec", day="29", volume="1", number="2", pages="e13", keywords="cancer", keywords="oncology", keywords="partner", keywords="needs", keywords="web-based interventions", keywords="interventions", abstract="Background: Evidence-based, easily accessible, supportive interventions for partners of cancer patients are limited, despite the fact that they often suffer from diminished emotional, social, physical, and relational functioning. To develop a new intervention that will fit their demands, it is important to consult potential users. Objective: To examine partners' interest in a Web-based psychological intervention and to identify their needs and wishes regarding such an intervention. Methods: Semistructured interviews were conducted with 16 partners of cancer patients, who varied in terms of age, gender, education, employment, type, and stage of disease. Partners were asked (1) whether they would use a psychological Web-based intervention and which preconditions (maximum time, structure, participate alone or with their partner) it should meet; (2) which functionalities (information, peer support, online psychological counseling) the intervention should contain; and (3) which topics (eg, taking care of oneself) should be addressed. Data were coded by 2 coders independently. Results: The need for a Web-based intervention varied. Arguments for being interested in a Web-based intervention included the need for acknowledgement; the need for someone they could talk to; and the need for information, tips, and support. Based on their experiences as a partner of a cancer patient, participants would prefer an intervention that is not too time-consuming (about 1-2 hours a week) and which is based on a ``step-by-step'' approach, meaning that the content of the intervention should match the stage of their partner's disease. Also, they would prefer a positive approach, which means that the intervention should be a source of hope and energy. Most participants stated that they would prefer to participate without their ill spouse, because they do not want to burden their partners with their own problems. An intervention should contain information and optional peer support. Participants' opinions about online psychological counseling in the intervention were divided. Arguments for online psychological counseling were that a professional could check on them and they were able to ask questions. Arguments against online counseling were that partners were not in need for guidance or they had enough support from usual care. Topics with the highest priority were ``coping with feelings and emotions,'' ``should I or shouldn't I spare my partner?,'' ``communicating with each other,'' ``asking for help and refusing help,'' and ``moving on with life after cancer treatment.'' Furthermore, participants suggested additional topics of ``dare to enjoy'' and ``acceptance of the patient's disease.'' Conclusions: A Web-based intervention can be a valuable addition to existing support initiatives for partners of cancer patients. This study provides important information about the content and form of such an intervention. Flexibility and a positive approach seem to be the most important features. ", doi="10.2196/cancer.4631", url="http://cancer.jmir.org/2015/2/e13/", url="http://www.ncbi.nlm.nih.gov/pubmed/28410157" } @Article{info:doi/10.2196/jmir.3652, author="Hall, Kelly Leslie and Kunz, F. Breanne and Davis, V. Elizabeth and Dawson, I. Rose and Powers, S. Ryan", title="The Cancer Experience Map: An Approach to Including the Patient Voice in Supportive Care Solutions", journal="J Med Internet Res", year="2015", month="May", day="28", volume="17", number="5", pages="e132", keywords="mHealth", keywords="patient participation", keywords="neoplasm", keywords="public policy", keywords="Internet intervention", keywords="cancer survivors", keywords="online interventions", doi="10.2196/jmir.3652", url="http://www.jmir.org/2015/5/e132/", url="http://www.ncbi.nlm.nih.gov/pubmed/26022846" } @Article{info:doi/10.2196/cancer.3883, author="Sato, Akira and Aramaki, Eiji and Shimamoto, Yumiko and Tanaka, Shiro and Kawakami, Koji", title="Blog Posting After Lung Cancer Notification: Content Analysis of Blogs Written by Patients or Their Families", journal="JMIR Cancer", year="2015", month="May", day="18", volume="1", number="1", pages="e5", keywords="blog", keywords="lung cancer", keywords="notification", keywords="content analysis", keywords="communication", keywords="Internet", abstract="Background: The advent and spread of the Internet has changed the way societies communicate. A portion of information on the Internet may constitute an important source of information concerning the experiences and thoughts of patients and their families. Patients and their families use blogs to obtain updated information, search for alternative treatments, facilitate communication with other patients, and receive emotional support. However, much of this information has yet to be actively utilized by health care professionals. Objective: We analyzed health-related information in blogs from Japan, focusing on the feelings and satisfaction levels of lung cancer patients or their family members after being notified of their disease. Methods: We collected 100 blogs written in Japanese by patients (or their families) who had been diagnosed with lung cancer by a physician. These 100 blogs posts were searchable between June 1 and June 30, 2013. We focused on blog posts that addressed the lung cancer notification event. We analyzed the data using two different approaches (Analysis A and Analysis B). Analysis A was blog content analysis in which we analyzed the content addressing the disease notification event in each blog. Analysis B was patient's dissatisfaction and anxiety analysis. Detailed blog content regarding patient's dissatisfaction and anxiety at the individual sentence level was coded and analyzed. Results: The 100 blog posts were written by 48 men, 46 women, and 6 persons whose sex was undisclosed. The average age of the blog authors was 52.4 years. With regard to cancer staging, there were 5 patients at Stage I, 3 patients at Stage II, 14 patients at Stage III, 21 patients at Stage IV, and 57 patients without a disclosed cancer stage. The results of Analysis A showed that the proportion of patients who were dissatisfied with the level of health care exceeded that of satisfied patients (22\% vs 8\%). From the 2499 sentences in the 100 blog posts analyzed, we identified expressions of dissatisfaction and anxiety in 495 sentences. Our results showed that there were substantially more posts concerning ``Way of living, reasons for living, set of values'' and ``Relationships with medical staff (own hospital)'' than in previous studies (Analysis B). Conclusions: This study provides insight into the feelings of dissatisfaction and anxieties held by lung cancer patients and their families, including those regarding the ``Way of living, reasons for living, set of values'' and ``Relationship with medical staff (own hospital),'' which were inaccessible in previous survey analyses. When comparing information obtained from patients' voluntary records and those from previous surveys conducted by health care institutions, it is likely that the former would be more indicative of patients' actual opinions and feelings. Therefore, it is important to utilize such records as an information resource. ", doi="10.2196/cancer.3883", url="https://cancer.jmir.org/2015/1/e5/", url="http://www.ncbi.nlm.nih.gov/pubmed/28410169" } @Article{info:doi/10.2196/cancer.3887, author="Carter, Wendy and Fergus, Karen and Ahmad, Saunia and McLeod, Deborah and Stephen, Joanne", title="Defining the Role of the Online Therapeutic Facilitator: Principles and Guidelines Developed for Couplelinks, an Online Support Program for Couples Affected by Breast Cancer", journal="JMIR Cancer", year="2015", month="Apr", day="14", volume="1", number="1", pages="e4", keywords="couples", keywords="cancer", keywords="Internet", keywords="online therapist", keywords="psychosocial support", keywords="therapeutic alliance", doi="10.2196/cancer.3887", url="http://cancer.jmir.org/2015/1/e4/", url="http://www.ncbi.nlm.nih.gov/pubmed/28410159" }