@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/10.2196/60681, author="Li, Huanhuan and Zhao, Yanjie and Li, Wei and Wang, Wenxia and Zhi, Shengze and Wu, Yifan and Zhong, Qiqing and Wang, Rui and Sun, Jiao", title="A WeChat-Based Decision Aid Intervention to Promote Informed Decision-Making for Family Members Regarding the Genetic Testing of Patients With Colorectal Cancer: Randomized Controlled Trial", journal="J Med Internet Res", year="2025", month="Apr", day="21", volume="27", pages="e60681", keywords="decision aid", keywords="genetic testing", keywords="hereditary colorectal cancer", keywords="informed decision-making", keywords="RCT", keywords="WeChat based", abstract="Background: Identifying patients with inherited colorectal cancer (CRC) syndromes offers many potential benefits. However, individuals often experience decisional conflict regarding genetic testing for CRC, and the uptake rate remains low. Given the growing popularity of genetic testing and the increasing demands on genetic service providers, strategies are needed to promote informed decision-making, increase genetic testing uptake among at-risk individuals, and ensure the rational use of genetic service resources. Objective: This study aims to determine whether a decision aid (DA) tool could promote informed decision-making among family members regarding the genetic testing of a patient with CRC. Methods: A single-center, parallel-group, randomized controlled trial was conducted. We randomized 82 family members of patients with CRC, who were involved in major medical decision-making for the patient, to either a DA intervention or usual care. The primary outcome was informed decision-making, assessed through measures of knowledge, decisional conflict, decision self-efficacy, and preparation for decision-making. Secondary outcomes included patients' uptake of genetic counseling and testing, participants' CRC screening behavior, healthy lifestyle scores, anxiety and depression levels, quality of life, and satisfaction with the intervention. Data were collected at baseline (T0), after the intervention (T1), and 3 months after the baseline survey (T2). The DA intervention and outcome assessments at T1 and T2 were delivered via WeChat. The effects of the intervention were analyzed using generalized estimating equation models. Results: Statistically significant improvements were observed in knowledge (T1: $\beta$=2.049, P<.001; T2: $\beta$=3.317, P<.001), decisional conflict (T1: $\beta$=--11.660, P<.001; T2: $\beta$=--17.587, P<.001), and decision self-efficacy (T1: $\beta$=15.353, P<.001; T2: $\beta$=22.337, P<.001) in the DA group compared with the usual care group at both T1 and T2. Additionally, the DA group showed significantly greater improvement in processed and red meat intake ($\beta$=--1.494, P<.001) at T1 and in healthy lifestyle scores ($\beta$=1.073, P=.03) at T2. No differences were found between the groups for other outcomes. Conclusions: A DA tool may be a safe, effective, and resource-efficient approach to facilitate informed decision-making about genetic testing. However, the current DA tool requires optimization and further evaluation---for example, by leveraging more advanced technology than WeChat to develop a simpler and more intelligent DA system. Trial Registration: Chinese Clinical Trial Registry ChiCTR2100048051; https://www.chictr.org.cn/showproj.html?proj=129054 ", doi="10.2196/60681", url="https://www.jmir.org/2025/1/e60681" } @Article{info:doi/10.2196/63677, author="Grilo, Ana and Marques, Catarina and Corte-Real, Maria and Carolino, Elisabete and Caetano, Marco", title="Assessing the Quality and Reliability of ChatGPT's Responses to Radiotherapy-Related Patient Queries: Comparative Study With GPT-3.5 and GPT-4", journal="JMIR Cancer", year="2025", month="Apr", day="16", volume="11", pages="e63677", keywords="artificial intelligence", keywords="ChatGPT", keywords="large language model", keywords="radiotherapy", keywords="patient information", keywords="quality", keywords="internet access", keywords="health information", keywords="cancer awareness", keywords="accuracy", keywords="readability", keywords="chatbot", keywords="patient query", keywords="chat generative pretrained transformer", keywords="OpenAI", keywords="natural language processing", keywords="patients with cancer", abstract="Background: Patients frequently resort to the internet to access information about cancer. However, these websites often lack content accuracy and readability. Recently, ChatGPT, an artificial intelligence--powered chatbot, has signified a potential paradigm shift in how patients with cancer can access vast amounts of medical information, including insights into radiotherapy. However, the quality of the information provided by ChatGPT remains unclear. This is particularly significant given the general public's limited knowledge of this treatment and concerns about its possible side effects. Furthermore, evaluating the quality of responses is crucial, as misinformation can foster a false sense of knowledge and security, lead to noncompliance, and result in delays in receiving appropriate treatment. Objective: This study aims to evaluate the quality and reliability of ChatGPT's responses to common patient queries about radiotherapy, comparing the performance of ChatGPT's two versions: GPT-3.5 and GPT-4. Methods: We selected 40 commonly asked radiotherapy questions and entered the queries in both versions of ChatGPT. Response quality and reliability were evaluated by 16 radiotherapy experts using the General Quality Score (GQS), a 5-point Likert scale, with the median GQS determined based on the experts' ratings. Consistency and similarity of responses were assessed using the cosine similarity score, which ranges from 0 (complete dissimilarity) to 1 (complete similarity). Readability was analyzed using the Flesch Reading Ease Score, ranging from 0 to 100, and the Flesch-Kincaid Grade Level, reflecting the average number of years of education required for comprehension. Statistical analyses were performed using the Mann-Whitney test and effect size, with results deemed significant at a 5\% level (P=.05). To assess agreement between experts, Krippendorff $\alpha$ and Fleiss $\kappa$ were used. Results: GPT-4 demonstrated superior performance, with a higher GQS and a lower number of scores of 1 and 2, compared to GPT-3.5. The Mann-Whitney test revealed statistically significant differences in some questions, with GPT-4 generally receiving higher ratings. The median (IQR) cosine similarity score indicated substantial similarity (0.81, IQR 0.05) and consistency in the responses of both versions (GPT-3.5: 0.85, IQR 0.04; GPT-4: 0.83, IQR 0.04). Readability scores for both versions were considered college level, with GPT-4 scoring slightly better in the Flesch Reading Ease Score (34.61) and Flesch-Kincaid Grade Level (12.32) compared to GPT-3.5 (32.98 and 13.32, respectively). Responses by both versions were deemed challenging for the general public. Conclusions: Both GPT-3.5 and GPT-4 demonstrated having the capability to address radiotherapy concepts, with GPT-4 showing superior performance. However, both models present readability challenges for the general population. Although ChatGPT demonstrates potential as a valuable resource for addressing common patient queries related to radiotherapy, it is imperative to acknowledge its limitations, including the risks of misinformation and readability issues. In addition, its implementation should be supported by strategies to enhance accessibility and readability. ", doi="10.2196/63677", url="https://cancer.jmir.org/2025/1/e63677" } @Article{info:doi/10.2196/67108, author="Lin, Chen Yu and Hagen, Ryan and Powers, D. Benjamin and Dineen, P. Sean and Milano, Jeanine and Hume, Emma and Sprow, Olivia and Diaz-Carraway, Sophia and Permuth, B. Jennifer and Deneve, Jeremiah and Alishahi Tabriz, Amir and Turner, Kea", title="Digital Health Intervention to Reduce Malnutrition Among Individuals With Gastrointestinal Cancer Receiving Cytoreductive Surgery Combined With Hyperthermic Intraperitoneal Chemotherapy: Feasibility, Acceptability, and Usability Trial", journal="JMIR Cancer", year="2025", month="Apr", day="7", volume="11", pages="e67108", keywords="gastrointestinal cancer", keywords="peritoneal disease", keywords="cytoreductive surgery combined with hyperthermic intraperitoneal chemotherapy", keywords="digital health intervention", keywords="nutrition", keywords="feasibility", abstract="Background: Cytoreductive surgery combined with hyperthermic intraperitoneal chemotherapy (CRS-HIPEC) can improve survival outcomes for individuals with gastrointestinal (GI) cancer and peritoneal disease (PD). Individuals with GI cancer and PD receiving CRS-HIPEC are at increased risk for malnutrition. Despite the increased risk for malnutrition, there has been limited study of nutritional interventions for individuals receiving CRS-HIPEC. Objective: We aimed to test the feasibility, acceptability, and usability of Support Through Remote Observation and Nutrition Guidance (STRONG), a multilevel digital health intervention to improve nutritional management among individuals with GI cancer and PD receiving CRS-HIPEC. We also assessed patient-reported outcomes, including malnutrition risk, health-related quality of life, and weight-related measures. Methods: STRONG is a 12-week digital intervention in which participants received biweekly nutritional counseling with a dietitian, logged food intake using a Fitbit tracker, and reported nutrition-related outcomes. Dietitians received access to a web-based dashboard and remotely monitored patients' reported food intake and nutrition-impact symptoms. Implementation outcomes were assessed against prespecified benchmarks consistent with benchmarks used in prior studies. Changes in patient-reported outcomes at baseline and follow-up were assessed using linear and ordered logistic regressions. Results: Participants (N=10) had a median age of 57.5 (IQR 54-69) years. Feasibility benchmarks were achieved for recruitment (10/17, 59\% vs benchmark: 50\%), study assessment completion (9/10, 90\% vs benchmark: 60\%), dietitian appointment attendance (7/10, 70\% vs benchmark: 60\%), daily food intake logging adherence (6/10, 60\% vs benchmark: 60\%), and participant retention (10/10, 100\% vs benchmark: 60\%). Most participants rated the intervention as acceptable (8/10, 80\% vs benchmark: 70\%) and reported a high level of usability for dietitian services (10/10, 100\%). The benchmark usability for the Fitbit tracker to log food intake was not met. Compared to baseline, participants saw on average a 6.0 point reduction in malnutrition risk score (P=.01), a 20.5 point improvement in general health-related quality of life score (P=.002), and a 5.6 percentage point increase in 1-month weight change (P=.04) at the end of the study. Conclusions: The STRONG intervention demonstrated to be feasible, acceptable, and usable among individuals with GI cancer and PD receiving CRS-HIPEC. A fully powered randomized controlled trial is needed to test the effectiveness of STRONG for reducing malnutrition and improving patient outcomes. Trial Registration: ClinicalTrials.gov NCT05649969; https://clinicaltrials.gov/study/NCT05649969 ", doi="10.2196/67108", url="https://cancer.jmir.org/2025/1/e67108" } @Article{info:doi/10.2196/56092, author="Karschuck, Philipp and Groeben, Christer and Koch, Rainer and Krones, Tanja and Neisius, Andreas and von Ahn, Sven and Klopf, Peter Christian and Weikert, Steffen and Siebels, Michael and Haseke, Nicolas and Weissflog, Christian and Baunacke, Martin and Thomas, Christian and Liske, Peter and Tosev, Georgi and Benusch, Thomas and Schostak, Martin and Stein, Joachim and Spiegelhalder, Philipp and Ihrig, Andreas and Huber, Johannes", title="Urologists' Estimation of Online Support Group Utilization Behavior of Their Patients With Newly Diagnosed Nonmetastatic Prostate Cancer in Germany: Predefined Secondary Analysis of a Randomized Controlled Trial", journal="J Med Internet Res", year="2025", month="Apr", day="7", volume="27", pages="e56092", keywords="peer support", keywords="prostate cancer", keywords="online support", keywords="health services research", keywords="randomized controlled trial", keywords="decision aid", abstract="Background: Due to its high incidence, prostate cancer (PC) imposes a burden on Western societies. Individualized treatment decision for nonmetastatic PC (eg, surgery, radiation, focal therapy, active surveillance, watchful waiting) is challenging. The range of options might make affected persons seek peer-to-peer counseling. Besides traditional face-to-face support groups (F2FGs), online support groups (OSGs) became important, especially during COVID-19. Objective: This study aims to investigate utilization behavior and physician advice concerning F2FGs and OSGs for patients with newly diagnosed PC. We hypothesized greater importance of OSGs to support treatment decisions. We assumed that this form of peer-to-peer support is underestimated by the treating physicians. We also considered the effects of the COVID-19 pandemic. Methods: This was a secondary analysis of data from a randomized controlled trial comparing an online decision aid versus a printed brochure for patients with nonmetastatic PC. We investigated 687 patients from 116 urological practices throughout Germany before primary treatment. Of these, 308 were included before and 379 during the COVID-19 pandemic. At the 1-year follow-up visit, patients filled an online questionnaire about their use of traditional or online self-help, including consultation behaviors or attitudes concerning initial treatment decisions. We measured secondary outcomes with validated questionnaires such as Distress Thermometer and the Patient Health Questionnaire-4 items to assess distress, anxiety, and depression. Physicians were asked in a paper-based questionnaire whether patients had accessed peer-to-peer support. Group comparisons were made using chi-square or McNemar tests for nominal variables and 2-sided t tests for ordinally scaled data. Results: Before COVID-19, 2.3\% (7/308) of the patients attended an F2FG versus none thereafter. The frequency of OSG use did not change significantly: OSGs were used by 24.7\% (76/308) and 23.5\% (89/308) of the patients before and during COVID-19, respectively. OSG users had higher levels of anxiety and depression; 38\% (46/121) reported OSG as helpful for decision-making. Although 4\% (19/477) of OSG nonusers regretted treatment decisions, only 0.7\% (1/153) of OSG users did (P=.03). More users than nonusers reported that OSGs were mentioned by physicians (P<.001). Patients and physicians agreed that F2FGs and OSGs were not mentioned in conversations or visited by patients. For 86\% (6/7) of the patients, the physician was not aware of F2FG attendance. Physicians underestimated OSG usage by 2.6\% (18/687) versus 24\% (165/687) of actual use (P<.001). Conclusions: Physicians are more aware of F2FGs than OSGs. Before COVID-19, F2FGs played a minor role. One out of 4 patients used OSGs. One-third considered them helpful for treatment decision-making. OSG use rarely affects the final treatment decision. Urologists significantly underestimate OSG use by their patients. Peer-to-peer support is more likely to be received by patients with anxiety and depression. Comparative interventional trials are needed to recommend peer-to-peer interventions for suitable patients. Trial Registration: German Clinical Trials Register DRKS-ID DRKS00014627; https://drks.de/search/en/trial/DRKS00014627 ", doi="10.2196/56092", url="https://www.jmir.org/2025/1/e56092" } @Article{info:doi/10.2196/67914, author="Liu, Darren and Hu, Xiao and Xiao, Canhua and Bai, Jinbing and Barandouzi, A. Zahra and Lee, Stephanie and Webster, Caitlin and Brock, La-Urshalar and Lee, Lindsay and Bold, Delgersuren and Lin, Yufen", title="Evaluation of Large Language Models in Tailoring Educational Content for Cancer Survivors and Their Caregivers: Quality Analysis", journal="JMIR Cancer", year="2025", month="Apr", day="7", volume="11", pages="e67914", keywords="large language models", keywords="GPT-4", keywords="cancer survivors", keywords="caregivers", keywords="education", keywords="health equity", abstract="Background: Cancer survivors and their caregivers, particularly those from disadvantaged backgrounds with limited health literacy or racial and ethnic minorities facing language barriers, are at a disproportionately higher risk of experiencing symptom burdens from cancer and its treatments. Large language models (LLMs) offer a promising avenue for generating concise, linguistically appropriate, and accessible educational materials tailored to these populations. However, there is limited research evaluating how effectively LLMs perform in creating targeted content for individuals with diverse literacy and language needs. Objective: This study aimed to evaluate the overall performance of LLMs in generating tailored educational content for cancer survivors and their caregivers with limited health literacy or language barriers, compare the performances of 3 Generative Pretrained Transformer (GPT) models (ie, GPT-3.5 Turbo, GPT-4, and GPT-4 Turbo; OpenAI), and examine how different prompting approaches influence the quality of the generated content. Methods: We selected 30 topics from national guidelines on cancer care and education. GPT-3.5 Turbo, GPT-4, and GPT-4 Turbo were used to generate tailored content of up to 250 words at a 6th-grade reading level, with translations into Spanish and Chinese for each topic. Two distinct prompting approaches (textual and bulleted) were applied and evaluated. Nine oncology experts evaluated 360 generated responses based on predetermined criteria: word limit, reading level, and quality assessment (ie, clarity, accuracy, relevance, completeness, and comprehensibility). ANOVA (analysis of variance) or chi-square analyses were used to compare differences among the various GPT models and prompts. Results: Overall, LLMs showed excellent performance in tailoring educational content, with 74.2\% (267/360) adhering to the specified word limit and achieving an average quality assessment score of 8.933 out of 10. However, LLMs showed moderate performance in reading level, with 41.1\% (148/360) of content failing to meet the sixth-grade reading level. LLMs demonstrated strong translation capabilities, achieving an accuracy of 96.7\% (87/90) for Spanish and 81.1\% (73/90) for Chinese translations. Common errors included imprecise scopes, inaccuracies in definitions, and content that lacked actionable recommendations. The more advanced GPT-4 family models showed better overall performance compared to GPT-3.5 Turbo. Prompting GPTs to produce bulleted-format content was likely to result in better educational content compared with textual-format content. Conclusions: All 3 LLMs demonstrated high potential for delivering multilingual, concise, and low health literacy educational content for cancer survivors and caregivers who face limited literacy or language barriers. GPT-4 family models were notably more robust. While further refinement is required to ensure simpler reading levels and fully comprehensive information, these findings highlight LLMs as an emerging tool for bridging gaps in cancer education and advancing health equity. Future research should integrate expert feedback, additional prompt engineering strategies, and specialized training data to optimize content accuracy and accessibility. International Registered Report Identifier (IRRID): RR2-10.2196/48499 ", doi="10.2196/67914", url="https://cancer.jmir.org/2025/1/e67914" } @Article{info:doi/10.2196/55475, author="Ahmed, Saima and Maheu, Christine and Gotlieb, Walter and Batist, Gerald and Loiselle, G. Carmen", title="Feasibility, Acceptability, and Potential Effects of a Digital Oral Anticancer Agent Intervention: Protocol for a Pilot Randomized Controlled Trial", journal="JMIR Res Protoc", year="2025", month="Mar", day="26", volume="14", pages="e55475", keywords="oral anticancer agent", keywords="supportive intervention", keywords="medication adherence", keywords="cancer", keywords="oncology", keywords="feasibility", keywords="acceptability", keywords="digital health", keywords="anticancer", keywords="adherence", keywords="compliance", keywords="RCT", keywords="randomized controlled trial", keywords="drug", keywords="pharmacy", keywords="pharmacology", keywords="pharmacotherapy", keywords="pharmaceutic", keywords="pharmaceutical", keywords="medication", keywords="mobile phone", abstract="Background: Individuals taking oral anticancer agents (OAAs) often face important challenges, requiring more timely informational support, ongoing monitoring, and side effect management. Objective: This study, guided by the Self-Efficacy Theory, aims to assess the feasibility, acceptability, and potential effects of a comprehensive, digital OAA intervention. Methods: A 2-arm, mixed methods, pilot randomized controlled trial took place at a large university-affiliated cancer center in Montreal, Quebec, Canada. Participants (N=52) completed baseline self-report e-questionnaires and subsequently were randomly assigned to the experimental group (intervention plus usual care, n=26) or control group (usual care only, n=26). The study intervention, designed to increase medication adherence via medication adherence self-efficacy and decreased symptom distress, included (1) OAA informational videos, (2) OAA-related e-handouts and other supportive resources, (3) nurse-led follow-up calls, and (4) e-reminders to take OAAs. The e-questionnaires were completed once a week for the first month and every 2 weeks for the subsequent 4 months, or until OAA treatment was completed. A subset from both groups (n=20) participated in semistructured interviews once they completed the study requirements. Study feasibility is assessed using recruitment, retention, and response rates, as well as intervention uptake. Through e-questionnaires and exit interviews, intervention acceptability is to be assessed prospectively at baseline and retrospectively upon study completion. Potential effects are then assessed via medication adherence self-efficacy, medication adherence self-report, and symptom distress. Results: Data collection was completed by December 2023 with a final sample size of 41. Results are expected to be published in 2025. Conclusions: This study relies on a theoretically based, OAA digital intervention with modalities tailored to the needs and preferences of participants. The use of quantitative and qualitative methods enriches our understanding of the potential contributions of the intervention. In addition, following participants over the course of treatment captures potential changes in oral treatment--related processes and outcomes. Trial Registration: ClinicalTrials.gov NCT04984850; https://www.clinicaltrials.gov/study/nct04984850 International Registered Report Identifier (IRRID): DERR1-10.2196/55475 ", doi="10.2196/55475", url="https://www.researchprotocols.org/2025/1/e55475" } @Article{info:doi/10.2196/63347, author="{\vS}uto Pavi{\v c}i{\'c}, Jelena and Maru{\vs}i{\'c}, Ana and Buljan, Ivan", title="Using ChatGPT to Improve the Presentation of Plain Language Summaries of Cochrane Systematic Reviews About Oncology Interventions: Cross-Sectional Study", journal="JMIR Cancer", year="2025", month="Mar", day="19", volume="11", pages="e63347", keywords="health literacy", keywords="patient education", keywords="health communication", keywords="ChatGPT", keywords="neoplasms", keywords="Cochrane", keywords="oncology", keywords="plain language", keywords="medical information", keywords="decision-making", keywords="large language model", keywords="artificial intelligence", keywords="AI", abstract="Background: Plain language summaries (PLSs) of Cochrane systematic reviews are a simple format for presenting medical information to the lay public. This is particularly important in oncology, where patients have a more active role in decision-making. However, current PLS formats often exceed the readability requirements for the general population. There is still a lack of cost-effective and more automated solutions to this problem. Objective: This study assessed whether a large language model (eg, ChatGPT) can improve the readability and linguistic characteristics of Cochrane PLSs about oncology interventions, without changing evidence synthesis conclusions. Methods: The dataset included 275 scientific abstracts and corresponding PLSs of Cochrane systematic reviews about oncology interventions. ChatGPT-4 was tasked to make each scientific abstract into a PLS using 3 prompts as follows: (1) rewrite this scientific abstract into a PLS to achieve a Simple Measure of Gobbledygook (SMOG) index of 6, (2) rewrite the PLS from prompt 1 so it is more emotional, and (3) rewrite this scientific abstract so it is easier to read and more appropriate for the lay audience. ChatGPT-generated PLSs were analyzed for word count, level of readability (SMOG index), and linguistic characteristics using Linguistic Inquiry and Word Count (LIWC) software and compared with the original PLSs. Two independent assessors reviewed the conclusiveness categories of ChatGPT-generated PLSs and compared them with original abstracts to evaluate consistency. The conclusion of each abstract about the efficacy and safety of the intervention was categorized as conclusive (positive/negative/equal), inconclusive, or unclear. Group comparisons were conducted using the Friedman nonparametric test. Results: ChatGPT-generated PLSs using the first prompt (SMOG index 6) were the shortest and easiest to read, with a median SMOG score of 8.2 (95\% CI 8?8.4), compared with the original PLSs (median SMOG score 13.1, 95\% CI 12.9?13.4). These PLSs had a median word count of 240 (95\% CI 232?248) compared with the original PLSs' median word count of 364 (95\% CI 339?388). The second prompt (emotional tone) generated PLSs with a median SMOG score of 11.4 (95\% CI 11.1?12), again lower than the original PLSs. PLSs produced with the third prompt (write simpler and easier) had a median SMOG score of 8.7 (95\% CI 8.4?8.8). ChatGPT-generated PLSs across all prompts demonstrated reduced analytical tone and increased authenticity, clout, and emotional tone compared with the original PLSs. Importantly, the conclusiveness categorization of the original abstracts was unchanged in the ChatGPT-generated PLSs. Conclusions: ChatGPT can be a valuable tool in simplifying PLSs as medically related formats for lay audiences. More research is needed, including oversight mechanisms to ensure that the information is accurate, reliable, and culturally relevant for different audiences. ", doi="10.2196/63347", url="https://cancer.jmir.org/2025/1/e63347" } @Article{info:doi/10.2196/57414, author="Lin, Shuangquan and Duan, Lingxing and Xu, Xiangda and Cao, Haichao and Lu, Xiongbing and Wen, Xi and Wei, Shanzun", title="Analyzing Online Search Trends for Kidney, Prostate, and Bladder Cancers in China: Infodemiology Study Using Baidu Search Data (2011-2023)", journal="JMIR Cancer", year="2025", month="Mar", day="14", volume="11", pages="e57414", keywords="bladder cancer", keywords="kidney cancer", keywords="prostate cancer", keywords="Baidu Index", keywords="infodemiology", keywords="public interest", keywords="patients' concern", abstract="Background: Cancers of the bladder, kidney, and prostate are the 3 major genitourinary cancers that significantly contribute to the global burden of disease (GBD) and continue to show increasing rates of morbidity and mortality worldwide. In mainland China, understanding the cancer burden on patients and their families is crucial; however, public awareness and concerns about these cancers, particularly from the patient's perspective, remain predominantly focused on financial costs. A more comprehensive exploration of their needs and concerns has yet to be fully addressed. Objective: This study aims to analyze trends in online searches and user information--seeking behaviors related to bladder, kidney, and prostate cancers---encompassing descriptive terms (eg, ``bladder cancer,'' ``kidney cancer,'' ``prostate cancer'') as well as related synonyms and variations---on both national and regional scales. This study leverages data from mainland China's leading search engine to explore the implications of these search patterns for addressing user needs and improving health management. Methods: The study analyzed Baidu Index search trends for bladder, kidney, and prostate cancers (from January 2011 to August 2023) at national and provincial levels. Search volume data were analyzed using the joinpoint regression model to calculate annual percentage changes (APCs) and average APCs (AAPCs), identifying shifts in public interest. User demand was assessed by categorizing the top 10 related terms weekly into 13 predefined topics, including diagnosis, treatment, and traditional Chinese medicine. Data visualization and statistical analyses were performed using Prism 9. Results revealed keyword trends, demographic distributions, and public information needs, offering insights into health communication and management strategies based on online information-seeking behavior. Results: Three cancer topics were analyzed using 39 search keywords, yielding a total Baidu Search Index (BSI) of 43,643,453. From 2011 to 2015, the overall APC was 15.2\% (P<.05), followed by --2.8\% from 2015 to 2021, and 8.9\% from 2021 to 2023, with an AAPC of 4.9\%. Bladder, kidney, and prostate cancers exhibited AAPCs of 2.8\%, 3.9\%, and 6.8\%, respectively (P<.05). The age distribution of individuals searching for these cancer topics varied across the topics. Geographically, searches for cancer were predominantly conducted by people from East China, who accounted for approximately 30\% of each cancer search query. Regarding user demand, the total BSI for relevant user demand terms from August 2022 to August 2023 was 676,526,998 out of 2,570,697,380 (15.74\%), representing only a limited total cancer-related search volume. Conclusions: Online searches and inquiries related to genitourinary cancers are on the rise. The depth of users' information demands appears to be influenced by regional economic levels. Cancer treatment decision-making may often involve a family-centered approach. Insights from internet search data can help medical professionals better understand public interests and concerns, enabling them to provide more targeted and reliable health care services. ", doi="10.2196/57414", url="https://cancer.jmir.org/2025/1/e57414" } @Article{info:doi/10.2196/53328, author="Zippi, D. Zachary and Cortopassi, O. Isabel and Grage, A. Rolf and Johnson, M. Elizabeth and McCann, R. Matthew and Mergo, J. Patricia and Sonavane, K. Sushil and Stowell, T. Justin and Little, P. Brent", title="Assessing Public Interest in Mammography, Computed Tomography Lung Cancer Screening, and Computed Tomography Colonography Screening Examinations Using Internet Search Data: Cross-Sectional Study", journal="JMIR Cancer", year="2025", month="Mar", day="11", volume="11", pages="e53328", keywords="lung cancer", keywords="lung cancer screening", keywords="breast cancer", keywords="mammography", keywords="colon cancer", keywords="CT colonography", keywords="Google search", keywords="internet", keywords="Google Trends", keywords="imaging-based", keywords="cancer screening", keywords="search data", keywords="noninvasive", keywords="cancer", keywords="CT", keywords="online", keywords="public awareness", keywords="big data", keywords="analytics", keywords="patient education", keywords="screening uptake", abstract="Background: The noninvasive imaging examinations of mammography (MG), low-dose computed tomography (CT) for lung cancer screening (LCS), and CT colonography (CTC) play important roles in screening for the most common cancer types. Internet search data can be used to gauge public interest in screening techniques, assess common screening-related questions and concerns, and formulate public awareness strategies. Objective: This study aims to compare historical Google search volumes for MG, LCS, and CTC and to determine the most common search topics. Methods: Google Trends data were used to quantify relative Google search frequencies for these imaging screening modalities over the last 2 decades. A commercial search engine tracking product (keywordtool.io) was used to assess the content of related Google queries over the year from May 1, 2022, to April 30, 2023, and 2 authors used an iterative process to agree upon a list of thematic categories for these queries. Queries with at least 10 monthly instances were independently assigned to the most appropriate category by the 2 authors, with disagreements resolved by consensus. Results: The mean 20-year relative search volume for MG was approximately 10-fold higher than for LCS and 25-fold higher than for CTC. Search volumes for LCS have trended upward since 2011. The most common topics of MG-related searches included nearby screening locations (60,850/253,810, 24\%) and inquiries about procedural discomfort (28,970/253,810, 11\%). Most common LCS-related searches included CT-specific inquiries (5380/11,150, 48\%) or general inquiries (1790/11,150, 16\%), use of artificial intelligence or deep learning (1210/11,150, 11\%), and eligibility criteria (1020/11,150, 9\%). For CTC, the most common searches were CT-specific inquiries (1800/5590, 32\%) or procedural details (1380/5590, 25\%). Conclusions: Over the past 2 decades, Google search volumes have been significantly higher for MG than for either LCS or CTC, although search volumes for LCS have trended upward since 2011. Knowledge of public interest and queries related to imaging-based screening techniques may help guide public awareness efforts. ", doi="10.2196/53328", url="https://cancer.jmir.org/2025/1/e53328" } @Article{info:doi/10.2196/66054, author="Tieu, Vivian and Kim, Sungjin and Seok, Minji and Ballas, Leslie and Kamrava, Mitchell and Atkins, M. Katelyn", title="Gender Differences in X (Formerly Twitter) Use Among Oncology Physicians at National Cancer Institute--Designated Cancer Centers: Cross-Sectional Study", journal="J Med Internet Res", year="2025", month="Mar", day="11", volume="27", pages="e66054", keywords="social media", keywords="gender disparities", keywords="gender differences", keywords="cross-sectional study", keywords="twitter", keywords="oncology", doi="10.2196/66054", url="https://www.jmir.org/2025/1/e66054" } @Article{info:doi/10.2196/64724, author="Johnson, Rose Anna and Longfellow, Anne Grace and Lee, N. Clara and Ormseth, Benjamin and Skolnick, B. Gary and Politi, C. Mary and Rivera, M. Yonaira and Myckatyn, Terence", title="Social Media as a Platform for Cancer Care Decision-Making Among Women: Internet Survey-Based Study on Trust, Engagement, and Preferences", journal="JMIR Cancer", year="2025", month="Mar", day="5", volume="11", pages="e64724", keywords="shared decision-making", keywords="SDM", keywords="decision aids", keywords="cancer treatment", keywords="breast cancer", keywords="digital health", keywords="social media", keywords="health communication", keywords="online decision aids", keywords="health information-seeking behavior", keywords="trust in health information", keywords="healthcare accessibility", keywords="mhealth", abstract="Background: Decision aids improve patient and clinician decision-making but are underused and often restricted to clinical settings. Objective: Given limited studies analyzing the feasibility of disseminating decision aids through social media, this study aimed to evaluate the acceptability, trust, and engagement of women with social media as a tool to deliver online decision aids for cancer treatment. Methods: To prepare for potential dissemination of a breast cancer decision aid via social media, a cross-sectional survey in February 2023 was conducted via Prime Panels, an online market research platform, of women aged 35-75 years in the United States. Demographics, health, cancer information-seeking behaviors, social media use, trust in social media for health information, as well as the likelihood of viewing cancer-related health information and clicking on decision aids through social media, were assessed. Statistical analyses included descriptive statistics, correlations, and multivariable ordinal regression. Results: Of 607 respondents, 397 (65.4\%) had searched for cancer information, with 185 (46.6\%) using the internet as their primary source. Facebook (Meta) was the most popular platform (511/607, 84.2\%). Trust in social media for health information was higher among Black (14/72, 19.4\%) and Asian respondents (7/27, 25.9\%) than among White respondents (49/480, 10.2\%; P=.003). Younger respondents aged 35-39 years (17/82, 20.7\%) showed higher trust than those aged 70-79 years (12/70, 17.1\%; P<.001). Trust in social media for health information was linked to a higher likelihood of viewing cancer information and accessing a decision aid online (P<.001). Participants who rated social media as ``Trustworthy'' (n=73) were more likely to view cancer information (61/73, 83.6\%) and click on decision aids (61/73, 83.6\%) than those who found it ``Untrustworthy'' (n=277; view: 133/277, 48.0\%; click: 125/277, 45.1\%). Engagement with social media positively correlated with viewing online cancer information (Spearman $\rho$=0.20, P<.001) and willingness to use decision aids ($\rho$=0.21, P<.001). Multivariable ordinal regression analyses confirmed that perception of social media's trustworthiness is a significant predictor of engagement with decision aids (untrustworthy vs trustworthy $\beta$=--1.826, P<.001; neutral vs trustworthy $\beta$=--0.926, P=.007) and of viewing cancer information (untrustworthy vs trustworthy $\beta$=--1.680, P<.001, neutral vs trustworthy $\beta$=--0.581, P=.098), while age and employment status were not significant predictors. Conclusions: This exploratory study suggests that social media platforms may increase access to health information and decision aids. No significant differences were observed between demographic variables and the use or trust in social media for health information. However, trust in social media emerged as a mediating factor between demographics and engagement with cancer information online. Before disseminating decision aids on social media, groups should identify existing trust and engagement patterns with different platforms within their target demographic. ", doi="10.2196/64724", url="https://cancer.jmir.org/2025/1/e64724", url="http://www.ncbi.nlm.nih.gov/pubmed/40053770" } @Article{info:doi/10.2196/64020, author="Takahashi, Noriaki and Nakao, Mutsuhiro and Nakayama, Tomio and Yamazaki, Tsutomu", title="Breast Cancer Screening Participation and Internet Search Activity in a Japanese Population: Decade-Long Time-Series Study", journal="JMIR Cancer", year="2025", month="Mar", day="4", volume="11", pages="e64020", keywords="breast cancer", keywords="cancer screening", keywords="internet use", keywords="mass media", keywords="public health surveillance", keywords="health belief model", keywords="mammography", keywords="awareness", keywords="Japanese", keywords="Google", abstract="Background: Breast cancer is a major health concern in various countries. Routine mammography screening has been shown to reduce breast cancer mortality, and Japan has set national targets to improve screening participation and increase public attention. However, collecting nationwide data on public attention and activity is not easy. Google Trends can reveal changes in societal interest, yet there are no reports on the relationship between internet search volume and nationwide participation rates in Japan. Objective: This study aims to reveal and discuss the relationship between public awareness and actual behavior in breast cancer screening by examining trends in internet search volume for the keyword ``breast cancer screening'' and participation rates over a decade-long period. Methods: This time-series study evaluated the association between internet search volume and breast cancer screening participation behavior among women aged 60?69 years in Japan from 2009 to 2019. Relative search volume (RSV) data for the search term ``breast cancer screening (nyuugan-kenshin)'' were extracted from Google Trends as internet search volume. Breast cancer screening and further assessment participation rates were based on government municipal screening data. Joinpoint regression analyses were conducted with weighted BIC to evaluate the time trends. An ethics review was not required because all data were open. Results: The RSV for ``breast cancer screening (nyuugan-kenshin)'' peaked in June 2017 (100) and showed clear spikes in June 2016 (94), September (69), and October (77) 2015. No RSVs above 60 were observed except around these three specific periods, and the average RSV for the entire period was 30.7 (SD 16.2). Two statistically significant joinpoints were detected, rising in December 2013 and falling in June 2017. Screening participation rates showed a temporary increase in 2015 in a slowly decreasing trend, and no joinpoints were detected. Further assessment participation rates showed a temporary spike in 2015 in the middle of an increasing trend, with a statistically significant point of slowing increase detected in 2015. Post hoc manual searches revealed that Japanese celebrities' breast cancer diagnoses were announced on the relevant dates, and many Japanese media reports were found. Conclusions: This study found a notable association between internet search activity and celebrity cancer media reports and a temporal association with screening participation in breast cancer screening in Japan. Celebrity cancer media reports triggered internet searches for cancer screening, but this did not lead to long-term changes in screening participation behavior. This finding suggests what information needs to be provided to citizens to encourage participation in screening. ", doi="10.2196/64020", url="https://cancer.jmir.org/2025/1/e64020" } @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/10.2196/59391, author="Newton, Lorelei and Monkman, Helen and Fullerton, Claire", title="Exploring Older Adult Cancer Survivors' Digital Information Needs: Qualitative Pilot Study", journal="JMIR Cancer", year="2025", month="Feb", day="27", volume="11", pages="e59391", keywords="older adults", keywords="cancer survivors", keywords="digital health literacy", keywords="digital health technologies", keywords="aging", keywords="qualitative", keywords="pilot study", keywords="semistructured interview", abstract="Background: Older adults (aged >65 years) are disproportionately affected by cancer at a time when Canadians are surviving cancer in an unprecedented fashion. Contrary to persistent ageist assumptions, not only do the majority of older adult cancer survivors use digital health technologies (DHTs) regularly, such technologies also serve as important sources of their health information. Although older adults' transition to cancer survivorship is connected to the availability and provision of relevant and reliable information, little evidence exists as to how they use DHTs to supplement their understanding of their unique situation to manage, and make decisions about, their ongoing cancer-related concerns. Objective: This pilot study, which examined older adult cancer survivors' use of DHTs, was conducted to support a larger study designed to explore how digital health literacy dimensions might affect the management of cancer survivorship sequelae. Understanding DHT use is also an important consideration for digital health literacy. Thus, we sought to investigate older adult cancer survivors' perceptions of DHTs in the context of accessing information about their health, health care systems, and health care providers. Methods: A qualitative pilot study, which involved semistructured interviews with older adult cancer survivors (N=5), was conducted to explore how participants interacted with, accessed, and searched for information, as well as how DHT use related to their cancer survivorship. Institutional ethics approval (\#21?0421) was obtained. Interpretive description inquiry---a practice-based approach suitable for generating applied knowledge---supported exploration of the research question. Thematic analysis was used to examine the transcripts for patterns of meaning (themes). Results: Assessing the credibility of digital information remains challenging for older adult cancer survivors. Identified benefits of DHTs included improved access to meet health information needs, older adult cancer survivors feeling empowered to make informed decisions regarding their health trajectory, and the ability to connect with interdisciplinary teams for care continuity. Additionally, participants described feeling disconnected when DHTs seemed to be used as substitutes for human interaction. The results of this pilot study were used to create 12 additional questions to supplement a digital health literacy survey, through which we will seek a more fulsome account of the relationship between digital health literacy and DHTs for older adult cancer survivors. Conclusions: Overall, this pilot study confirmed the utility of DHTs in enhancing the connection of older adult cancer survivors to their health care needs. Importantly, this connection exists on a continuum, and providing greater access to technologies, in combination with human support, leads to feelings of empowerment. DHTs are an important aspect of contemporary health care; yet, these technologies must be seen as complementary and not as replacements for human interaction. Otherwise, we risk dehumanizing patients and disconnecting them from the care that they need and deserve. ", doi="10.2196/59391", url="https://cancer.jmir.org/2025/1/e59391" } @Article{info:doi/10.2196/59483, author="Yang, Hongwu and Zhu, Chuangying and Zhou, Chunyan and Huang, Ruibin and Huang, Lipeng and Chen, Peifen and Zhu, Shanshan and Wang, Huanpeng and Zhu, Chunmin", title="Evaluation of Douyin Short Videos on Mammography in China: Quality and Reliability Analysis", journal="JMIR Cancer", year="2025", month="Feb", day="19", volume="11", pages="e59483", keywords="breast cancer", keywords="mammography", keywords="Douyin", keywords="information quality", keywords="social media", keywords="video", keywords="DISCERN", keywords="Global Quality Score", keywords="web-based education", keywords="cancer screening", keywords="health information", keywords="medical content", abstract="Background: Breast cancer is the most common malignant tumor and the fifth leading cause of cancer death worldwide, imposing a significant disease burden in China. Mammography is a key method for breast cancer screening, particularly for early diagnosis. Douyin, a popular social media platform, is increasingly used for sharing health information, but the quality and reliability of mammography-related videos remain unexamined. Objective: This study aimed to evaluate the information quality and reliability of mammography videos on Douyin. Methods: In October 2023, a search using the Chinese keywords for ``mammography'' and ``mammography screening'' was conducted on Douyin. From 200 retrieved videos, 136 mammography-related videos were selected for analysis. Basic video information, content, and sources were extracted. Video content was assessed for comprehensiveness across 7 categories: conception, examination process, applicable objects, precautions, combined examinations, advantages, and report. Completeness was evaluated using a researcher-developed checklist, while reliability and quality were measured using 2 modified DISCERN (mDISCERN) tool and the Global Quality Score (GQS). Correlations between video quality and characteristics were also examined. Results: Among the video sources, 82.4\% (112/136) were attributed to health professionals, and 17.6\% (24/136) were attributed to nonprofessionals. Among health professionals, only 1 was a radiologist. Overall, 77.2\% (105/136) of the videos had useful information about mammography. Among the useful videos, the advantages of mammography were the most frequently covered topic (53/105, 50.5\%). Median values for the mDISCERN and GQS evaluations across all videos stood at 2.5 (IQR 1.63?3) and 2 (IQR 1?2), respectively. Within the subgroup assessment, the median mDISCERN score among the useful and professional groups stood at 2 (IQR 2?3) and 3 (IQR 2?3), respectively, surpassing the corresponding score for the unhelpful and nonprofessional groups at 0 (IQR 0?0) and 0 (IQR 0?0.75; P<.001). Likewise, the median GQS among the useful and professional groups was evaluated at 2 (IQR 1.5?2) and 2 (IQR 1?2), respectively, eclipsing that of the unhelpful and nonprofessional groups at 1 (IQR 1?1) and 1 (IQR 1?1.37; P<.001). The GQS was weak and negatively correlated with the number of likes (r=?0.24; P=.004), comments (r=?0.29; P<.001), and saves (r=?0.20; P=.02). The mDISCERN score was weak and negatively correlated with the number of likes (r=?0.26; P=.002), comments (r=?0.36; P<.001), saves (r=?0.22; P=.009), and shares (r=?0.18; P=.03). Conclusions: The overall quality of mammography videos on Douyin is suboptimal, with most content uploaded by clinicians rather than radiologists. Radiologists should be encouraged to create accurate and informative videos to better educate patients. As Douyin grows as a health information platform, stricter publishing standards are needed to enhance the quality of medical content. ", doi="10.2196/59483", url="https://cancer.jmir.org/2025/1/e59483" } @Article{info:doi/10.2196/66633, author="Chow, L. James C. and Li, Kay", title="Developing Effective Frameworks for Large Language Model--Based Medical Chatbots: Insights From Radiotherapy Education With ChatGPT", journal="JMIR Cancer", year="2025", month="Feb", day="18", volume="11", pages="e66633", keywords="artificial intelligence", keywords="AI", keywords="AI in medical education", keywords="radiotherapy chatbot", keywords="large language models", keywords="LLMs", keywords="medical chatbots", keywords="health care AI", keywords="ethical AI in health care", keywords="personalized learning", keywords="natural language processing", keywords="NLP", keywords="radiotherapy education", keywords="AI-driven learning tools", doi="10.2196/66633", url="https://cancer.jmir.org/2025/1/e66633" } @Article{info:doi/10.2196/62703, author="Fridman, Ilona and Boyles, Dahlia and Chheda, Ria and Baldwin-SoRelle, Carrie and Smith, B. Angela and Elston Lafata, Jennifer", title="Identifying Misinformation About Unproven Cancer Treatments on Social Media Using User-Friendly Linguistic Characteristics: Content Analysis", journal="JMIR Infodemiology", year="2025", month="Feb", day="12", volume="5", pages="e62703", keywords="linguistic characteristics", keywords="linguistic features", keywords="cancer", keywords="Linguistic Inquiry and Word Count", keywords="misinformation", keywords="X", keywords="Twitter", keywords="alternative therapy", keywords="oncology", keywords="social media", keywords="natural language processing", keywords="machine learning", keywords="synthesis", keywords="review methodology", keywords="search", keywords="literature review", abstract="Background: Health misinformation, prevalent in social media, poses a significant threat to individuals, particularly those dealing with serious illnesses such as cancer. The current recommendations for users on how to avoid cancer misinformation are challenging because they require users to have research skills. Objective: This study addresses this problem by identifying user-friendly characteristics of misinformation that could be easily observed by users to help them flag misinformation on social media. Methods: Using a structured review of the literature on algorithmic misinformation detection across political, social, and computer science, we assembled linguistic characteristics associated with misinformation. We then collected datasets by mining X (previously known as Twitter) posts using keywords related to unproven cancer therapies and cancer center usernames. This search, coupled with manual labeling, allowed us to create a dataset with misinformation and 2 control datasets. We used natural language processing to model linguistic characteristics within these datasets. Two experiments with 2 control datasets used predictive modeling and Lasso regression to evaluate the effectiveness of linguistic characteristics in identifying misinformation. Results: User-friendly linguistic characteristics were extracted from 88 papers. The short-listed characteristics did not yield optimal results in the first experiment but predicted misinformation with an accuracy of 73\% in the second experiment, in which posts with misinformation were compared with posts from health care systems. The linguistic characteristics that consistently negatively predicted misinformation included tentative language, location, URLs, and hashtags, while numbers, absolute language, and certainty expressions consistently predicted misinformation positively. Conclusions: This analysis resulted in user-friendly recommendations, such as exercising caution when encountering social media posts featuring unwavering assurances or specific numbers lacking references. Future studies should test the efficacy of the recommendations among information users. ", doi="10.2196/62703", url="https://infodemiology.jmir.org/2025/1/e62703" } @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/10.2196/63626, author="Kuerbanjiang, Warisijiang and Peng, Shengzhe and Jiamaliding, Yiershatijiang and Yi, Yuexiong", title="Performance Evaluation of Large Language Models in Cervical Cancer Management Based on a Standardized Questionnaire: Comparative Study", journal="J Med Internet Res", year="2025", month="Feb", day="5", volume="27", pages="e63626", keywords="large language model", keywords="cervical cancer", keywords="screening", keywords="artificial intelligence", keywords="model interpretability", abstract="Background: Cervical cancer remains the fourth leading cause of death among women globally, with a particularly severe burden in low-resource settings. A comprehensive approach---from screening to diagnosis and treatment---is essential for effective prevention and management. Large language models (LLMs) have emerged as potential tools to support health care, though their specific role in cervical cancer management remains underexplored. Objective: This study aims to systematically evaluate the performance and interpretability of LLMs in cervical cancer management. Methods: Models were selected from the AlpacaEval leaderboard version 2.0 and based on the capabilities of our computer. The questions inputted into the models cover aspects of general knowledge, screening, diagnosis, and treatment, according to guidelines. The prompt was developed using the Context, Objective, Style, Tone, Audience, and Response (CO-STAR) framework. Responses were evaluated for accuracy, guideline compliance, clarity, and practicality, graded as A, B, C, and D with corresponding scores of 3, 2, 1, and 0. The effective rate was calculated as the ratio of A and B responses to the total number of designed questions. Local Interpretable Model-Agnostic Explanations (LIME) was used to explain and enhance physicians' trust in model outputs within the medical context. Results: Nine models were included in this study, and a set of 100 standardized questions covering general information, screening, diagnosis, and treatment was designed based on international and national guidelines. Seven models (ChatGPT-4.0 Turbo, Claude 2, Gemini Pro, Mistral-7B-v0.2, Starling-LM-7B alpha, HuatuoGPT, and BioMedLM 2.7B) provided stable responses. Among all the models included, ChatGPT-4.0 Turbo ranked first with a mean score of 2.67 (95\% CI 2.54-2.80; effective rate 94.00\%) with a prompt and 2.52 (95\% CI 2.37-2.67; effective rate 87.00\%) without a prompt, outperforming the other 8 models (P<.001). Regardless of prompts, QiZhenGPT consistently ranked among the lowest-performing models, with P<.01 in comparisons against all models except BioMedLM. Interpretability analysis showed that prompts improved alignment with human annotations for proprietary models (median intersection over union 0.43), while medical-specialized models exhibited limited improvement. Conclusions: Proprietary LLMs, particularly ChatGPT-4.0 Turbo and Claude 2, show promise in clinical decision-making involving logical analysis. The use of prompts can enhance the accuracy of some models in cervical cancer management to varying degrees. Medical-specialized models, such as HuatuoGPT and BioMedLM, did not perform as well as expected in this study. By contrast, proprietary models, particularly those augmented with prompts, demonstrated notable accuracy and interpretability in medical tasks, such as cervical cancer management. However, this study underscores the need for further research to explore the practical application of LLMs in medical practice. ", doi="10.2196/63626", url="https://www.jmir.org/2025/1/e63626" } @Article{info:doi/10.2196/63864, author="Tong, Chau and Margolin, Drew and Niederdeppe, Jeff and Chunara, Rumi and Liu, Jiawei and Jih-Vieira, Lea and King, J. Andy", title="Colorectal Cancer Racial Equity Post Volume, Content, and Exposure: Observational Study Using Twitter Data", journal="J Med Internet Res", year="2025", month="Feb", day="3", volume="27", pages="e63864", keywords="racial equity information", keywords="information exposure", keywords="health disparities", keywords="colorectal cancer", keywords="cancer communication", keywords="Twitter", keywords="X", abstract="Background: Racial inequity in health outcomes, particularly in colorectal cancer (CRC), remains one of the most pressing issues in cancer communication and public health. Social media platforms like Twitter (now X) provide opportunities to disseminate health equity information widely, yet little is known about the availability, content, and reach of racial health equity information related to CRC on these platforms. Addressing this gap is essential to leveraging social media for equitable health communication. Objective: This study aims to analyze the volume, content, and exposure of CRC racial health equity tweets from identified CRC equity disseminator accounts on Twitter. These accounts were defined as those actively sharing information related to racial equity in CRC outcomes. By examining the behavior and impact of these disseminators, this study provides insights into how health equity content is shared and received on social media. Methods: We identified accounts that posted CRC-related content on Twitter between 2019 and 2021. Accounts were classified as CRC equity disseminators (n=798) if they followed at least 2 CRC racial equity organization accounts. We analyzed the volume and content of racial equity--related CRC tweets (n=1134) from these accounts and categorized them by account type (experts vs nonexperts). Additionally, we evaluated exposure by analyzing follower reach (n=6,266,269) and the role of broker accounts---accounts serving as unique sources of CRC racial equity information to their followers. Results: Among 19,559 tweets posted by 798 CRC equity disseminators, only 5.8\% (n=1134) mentioned racially and ethnically minoritized groups. Most of these tweets (641/1134, 57\%) addressed disparities in outcomes, while fewer emphasized actionable content, such as symptoms (11/1134, 1\%) or screening procedures (159/1134, 14\%). Expert accounts (n=479; 716 tweets) were more likely to post CRC equity tweets compared with nonexpert accounts (n=319; 418 tweets). Broker accounts (n=500), or those with a substantial portion of followers relying on them for equity-related information, demonstrated the highest capacity for exposing followers to CRC equity content, thereby extending the reach of these critical messages to underserved communities. Conclusions: This study emphasizes the critical roles played by expert and broker accounts in disseminating CRC racial equity information on social media. Despite the limited volume of equity-focused content, broker accounts were crucial in reaching otherwise unexposed audiences. Public health practitioners should focus on encouraging equity disseminators to share more actionable information, such as symptoms and screening benefits, and implement measures to amplify the reach of such content on social media. Strengthening these efforts could help bridge disparities in cancer outcomes among racially minoritized groups. ", doi="10.2196/63864", url="https://www.jmir.org/2025/1/e63864" } @Article{info:doi/10.2196/58938, author="Fraterman, Itske and Sacchi, Lucia and Mallo, Henk and Tibollo, Valentina and Glaser, Catherina Savannah Lucia and Medlock, Stephanie and Cornet, Ronald and Gabetta, Matteo and Hisko, Vitali and Khadakou, Vadzim and Barkan, Ella and Del Campo, Laura and Glasspool, David and Kogan, Alexandra and Lanzola, Giordano and Leizer, Roy and Ottaviano, Manuel and Peleg, Mor and ?niata?a, Konrad and Lisowska, Aneta and Wilk, Szymon and Parimbelli, Enea and Quaglini, Silvana and Rizzo, Mimma and Locati, Deborah Laura and Boekhout, Annelies and van de Poll-Franse, V. Lonneke and Wilgenhof, Sofie", title="Exploring the Impact of the Multimodal CAPABLE eHealth Intervention on Health-Related Quality of Life in Patients With Melanoma Undergoing Immune-Checkpoint Inhibition: Prospective Pilot Study", journal="JMIR Cancer", year="2025", month="Jan", day="30", volume="11", pages="e58938", keywords="eHealth", keywords="melanoma", keywords="cancer", keywords="fatigue", keywords="quality of life", keywords="intervention", keywords="pilot study", keywords="exploratory", keywords="health-related", keywords="interventions", keywords="symptom", keywords="monitoring", keywords="well-being", keywords="immunotherapy", keywords="immune-related", keywords="immune-checkpoint inhibitor", keywords="patient", keywords="feasibility", keywords="smartphone", keywords="app", keywords="smartwatch", keywords="linear regression model", keywords="mobile phone", abstract="Background: Patients with melanoma receiving immunotherapy with immune-checkpoint inhibitors often experience immune-related adverse events, cancer-related fatigue, and emotional distress, affecting health-related quality of life (HRQoL) and clinical outcome to immunotherapy. eHealth tools can aid patients with cancer in addressing issues, such as adverse events and psychosocial well-being, from various perspectives. Objective: This study aimed to explore the effect of the Cancer Patients Better Life Experience (CAPABLE) system, accessed through a mobile app, on HRQoL compared with a matched historical control group receiving standard care. CAPABLE is an extensively tested eHealth app, including educational material, remote symptom monitoring, and well-being interventions. Methods: This prospective pilot study compared an exploratory cohort that received the CAPABLE smartphone app and a multisensory smartwatch for 6 months (intervention) to a 2:1 individually matched historical prospective control group. HRQoL data were measured with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 at baseline (T0), 3 months (T1), and 6 months (T2) after start of treatment. Mixed effects linear regression models were used to compare HRQoL between the 2 groups over time. Results: From the 59 eligible patients for the CAPABLE intervention, 31 (53\%) signed informed consent to participate. Baseline HRQoL was on average 10 points higher in the intervention group compared with controls, although equally matched on baseline and clinical characteristics. When correcting for sex, age, disease stage, and baseline scores, an adjusted difference in fatigue of ?5.09 (95\% CI ?15.20 to 5.02, P=.32) at month 3 was found. No significant nor clinically relevant adjusted differences on other HRQoL domains over time were found. However, information satisfaction was significantly higher in the CAPABLE group ($\beta$=8.71, 95\% CI 1.54?15.88, P=.02). Conclusions: The intervention showed a limited effect on HRQoL, although there was a small improvement in fatigue at 3 months, as well as information satisfaction. When aiming at personalized patient and survivorship care, further optimization and prospective investigation of eHealth tools is warranted. Trial Registration: ClinicalTrials NCT05827289; https://clinicaltrials.gov/study/NCT05827289 International Registered Report Identifier (IRRID): RR2-10.2196/49252 ", doi="10.2196/58938", url="https://cancer.jmir.org/2025/1/e58938" } @Article{info:doi/10.2196/65974, author="Villain, Patricia and Downham, Laura and Le Bonniec, Alice and Bauquier, Charlotte and Mandrik, Olena and Nadarzynski, Tom and Donelle, Lorie and Murillo, Ra{\'u}l and Tolma, L. Eleni and Johnson, Sonali and Soler-Michel, Patricia and Smith, Robert", title="Impact of Online Interactive Decision Tools on Women's Decision-Making Regarding Breast Cancer Screening: Systematic Review and Meta-Analysis", journal="J Med Internet Res", year="2025", month="Jan", day="29", volume="27", pages="e65974", keywords="breast cancer screening", keywords="decision-making", keywords="online interactive", keywords="decision aid", keywords="average risk", keywords="shared decision-making", keywords="screening participation", keywords="cognitive determinants", keywords="women", abstract="Background: The online nature of decision aids (DAs) and related e-tools supporting women's decision-making regarding breast cancer screening (BCS) through mammography may facilitate broader access, making them a valuable addition to BCS programs. Objective: This systematic review and meta-analysis aims to evaluate the scientific evidence on the impacts of these e-tools and to provide a comprehensive assessment of the factors associated with their increased utility and efficacy. Methods: We followed the 2020 PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines and conducted a search of MEDLINE, PsycINFO, Embase, CINAHL, and Web of Science databases from August 2010 to April 2023. We included studies reporting on populations at average risk of breast cancer, which utilized DAs or related e-tools, and assessed women's participation in BCS by mammography or other key cognitive determinants of decision-making as primary or secondary outcomes. We conducted meta-analyses on the identified randomized controlled trials, which were assessed using the revised Cochrane Risk of Bias 2 (RoB 2) tool. We further explored intermediate and high heterogeneity between studies to enhance the validity of our results. Results: In total, 22 different e-tools were identified across 31 papers. The degree of tailoring in the e-tools, specifically whether the tool was fully tailored or featured with tailoring, was the most influential factor in women's decision-making regarding BCS. Compared with control groups, tailored e-tools significantly increased women's long-term participation in BCS (risk ratio 1.14, 95\% CI 1.07-1.23, P<.001, I2=0\%). Tailored-to-breast-cancer-risk e-tools increased women's level of worry (mean difference 0.31, 95\% CI 0.13-0.48, P<.001, I2=0\%). E-tools also improved women's adequate knowledge of BCS, with features-with-tailoring e-tools designed and tested with the general population being more effective than tailored e-tools designed for or tested with non-BCS participants ($\chi$21=5.1, P=.02). Features-with-tailoring e-tools increased both the rate of women who intended not to undergo BCS (risk ratio 1.88, 95\% CI 1.43-2.48, P<.001, I2=0\%) and the rate of women who had made an informed choice regarding their intention to undergo BCS (risk ratio 1.60, 95\% CI 1.09-2.33, P=.02, I2=91\%). Additionally, these tools decreased the proportion of women with decision conflict (risk ratio 0.77, 95\% CI 0.65-0.91, P=.002, I2=0\%). Shared decision-making was not formally evaluated. This review is limited by small sample sizes, including only a few studies in the meta-analysis, some with a high risk of bias, and high heterogeneity between the studies and e-tools. Conclusions: Features-with-tailoring e-tools could potentially negatively impact BCS programs by fostering negative intentions and attitudes toward BCS participation. Conversely, tailored e-tools may increase women's participation in BCS but, when tailored to risk, they may elevate their levels of worry. To maximize the effectiveness of e-tools while minimizing potential negative impacts, we advocate for an ``on-demand'' layered approach to their design. ", doi="10.2196/65974", url="https://www.jmir.org/2025/1/e65974" } @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/10.2196/52886, author="Spiegel, Y. Daphna and Friesner, D. Isabel and Zhang, William and Zack, Travis and Yan, Gianna and Willcox, Julia and Prionas, Nicolas and Singer, Lisa and Park, Catherine and Hong, C. Julian", title="Exploring the Social Media Discussion of Breast Cancer Treatment Choices: Quantitative Natural Language Processing Study", journal="JMIR Cancer", year="2025", month="Jan", day="28", volume="11", pages="e52886", keywords="breast cancer", keywords="social media", keywords="patient decision-making", keywords="natural language processing", keywords="breast conservation", keywords="mastectomy", abstract="Background: Early-stage breast cancer has the complex challenge of carrying a favorable prognosis with multiple treatment options, including breast-conserving surgery (BCS) or mastectomy. Social media is increasingly used as a source of information and as a decision tool for patients, and awareness of these conversations is important for patient counseling. Objective: The goal of this study was to compare sentiments and associated emotions in social media discussions surrounding BCS and mastectomy using natural language processing (NLP). Methods: Reddit posts and comments from the Reddit subreddit r/breastcancer and associated metadata were collected using pushshift.io. Overall, 105,231 paragraphs across 59,416 posts and comments from 2011 to 2021 were collected and analyzed. Paragraphs were processed through the Apache Clinical Text Analysis Knowledge Extraction System and identified as discussing BCS or mastectomy based on physician-defined Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT) concepts. Paragraphs were analyzed with a VADER (Valence Aware Dictionary for Sentiment Reasoning) compound sentiment score (ranging from ?1 to 1, corresponding to negativity or positivity) and GoEmotions scores (0?1) corresponding to the intensity of 27 different emotions and neutrality. Results: Of the 105,231 paragraphs, there were 7306 (6.94\% of those analyzed) paragraphs mentioning BCS and mastectomy (2729 and 5476, respectively). Discussion of both increased over time, with BCS outpacing mastectomy. The median sentiment score for all discussions analyzed in aggregate became more positive over time. In specific analyses by topic, positive sentiments for discussions with mastectomy mentions increased over time; however, discussions with BCS-specific mentions did not show a similar trend and remained overall neutral. Compared to BCS, conversations about mastectomy tended to have more positive sentiments. The most commonly identified emotions included neutrality, gratitude, caring, approval, and optimism. Anger, annoyance, disappointment, disgust, and joy increased for BCS over time. Conclusions: Patients are increasingly participating in breast cancer therapy discussions with a web-based community. While discussions surrounding mastectomy became increasingly positive, BCS discussions did not show the same trend. This mirrors national clinical trends in the United States, with the increasing use of mastectomy over BCS in early-stage breast cancer. Recognizing sentiments and emotions surrounding the decision-making process can facilitate patient-centric and emotionally sensitive treatment recommendations. ", doi="10.2196/52886", url="https://cancer.jmir.org/2025/1/e52886" } @Article{info:doi/10.2196/64265, author="Beauchemin, P. Melissa and Walker, Desiree and Rosen, Allison and Frazer, Maria and Eisenberger, Meital and Khurana, K. Rhea and Bentlyewski, Edward and Fedorko, Victoria and Basch, H. Corey and Hillyer, C. Grace", title="Insights From Diverse Perspectives on Social Media Messages to Inform Young Adults With Cancer About Clinical Trials: Focus Group Study", journal="JMIR Form Res", year="2025", month="Jan", day="20", volume="9", pages="e64265", keywords="young adults", keywords="adolescent and young adult cancer", keywords="cancer", keywords="cancer treatment", keywords="clinical trials", keywords="clinical trial awareness", keywords="clinical trial enrollment", keywords="clinical trial knowledge", keywords="clinical trial attitudes", keywords="clinical trial enrollment barriers", keywords="social media", keywords="social media messages", keywords="psychosocial", keywords="United States", abstract="Background: Low rates of adolescent and young adult (YA; aged 15-39 y) clinical trial enrollment (CTE), particularly among underserved groups, have resulted in a lack of standardized cancer treatments and follow-up guidelines for this group that may limit improvement in cancer treatments and survival outcomes for YAs. Objective: To understand and address unique barriers to CTE, we conducted focus groups to learn about informational, financial, and psychosocial needs of YAs surrounding CTE and identify strategies to address these barriers. Methods: We conducted 5 focus groups in 2023 among a diverse sample of YA patients from across the United States. An interview guide was developed collaboratively with YA advocates. Specifically, informational needs, financial concerns, and psychosocial issues were explored, and participants were probed to suggest strategies, especially those that leverage technology, to address these barriers. Sessions were audio recorded, transcribed, and coded using direct content analysis. Findings were synthesized through consensus discussions. Results: We confirmed the previously proposed thematic barriers regarding YA CTE and identified 9 subthemes: awareness, lack of clear and accessible CTE information, fear of the unknown, assumptions about costs, insurance coverage, navigating financial responsibilities, clinical trial discussions, clinical trial misconceptions, and desire for a support network. Throughout, YAs mentioned needs that might be addressed through informational outreach leveraging digital technology, the internet, and social media. Conclusions: This study expands knowledge of YA perceived barriers to CTE. These findings suggest that leveraging digital technology to disseminate reliable information to address needs may be an effective strategy to improve clinical trial participation in the YA population. ", doi="10.2196/64265", url="https://formative.jmir.org/2025/1/e64265" } @Article{info:doi/10.2196/59464, author="Rivera Rivera, N. Jessica and Snir, Moran and Simmons, Emilie and Schmidlen, Tara and Sholeh, Misha and Maconi, Leigh Melinda and Geiss, Carley and Fulton, Hayden and Barton, Laura and Gonzalez, D. Brian and Permuth, Jennifer and Vadaparampil, Susan", title="Developing and Assessing a Scalable Digital Health Tool for Pretest Genetic Education in Patients With Early-Onset Colorectal Cancer: Mixed Methods Design", journal="JMIR Cancer", year="2025", month="Jan", day="17", volume="11", pages="e59464", keywords="genetic education", keywords="genetic testing", keywords="genetic counseling", keywords="digital health", keywords="early-onset colorectal cancer", abstract="Background: National guidelines recommend germline genetic testing (GT) for all patients with early-onset colorectal cancer. With recent advances in targeted therapies and GT, these guidelines are expected to expand to include broader groups of patients with colorectal cancer. However, there is a shortage of genetic professionals to provide the necessary education and support for informed consent. As such, there is a pressing need to identify alternative approaches to facilitate and expedite access to GT. Objective: This study describes the development of a pretest education intervention, Nest-CRC, to facilitate the uptake of germline GT among patients with early-onset colorectal cancer. Patients with early-onset colorectal cancer and health care providers reviewed Nest-CRC, and their reactions and recommendations were captured using a nested mixed methods approach. Methods: Using the learner verification approach, we conducted 2 sequential phases of surveys and interviews with English- and Spanish-speaking patients with early-onset colorectal cancer and health care providers. The surveys assessed participants' experiences with genetic services and provided immediate feedback on the Nest-CRC genetic education modules. Semistructured interviews evaluated participants' perceptions of self-efficacy, attraction, comprehension, cultural acceptability, and usability of Nest-CRC. Survey data were analyzed using descriptive statistics (mean, median, and proportions), while interview data were analyzed through line-by-line coding of the transcribed interviews. After each phase, Nest-CRC was refined based on participants' recommendations. Results: A total of 52 participants, including 39 patients with early-onset colorectal cancer and 13 providers, participated in the study. Of these, 19 patients and 6 providers participated in phase 1 (N=25), and 20 patients and 7 providers participated in phase 2 (N=27). Most participants (phase 1: 23/25, 92\%, to 25/25, 100\%; phase 2: 24/27, 89\%, to 27/27, 100\%) agreed that each of the 5 education modules was easy to understand and helpful; 13 patients reported no history of GT, with 11 (85\%) expressing interest in GT and 2 (15\%) remaining unsure after completing Nest-CRC. Participants reported that Nest-CRC provided sufficient information to help them decide about GT. The tool was deemed acceptable by individuals from diverse backgrounds, and participants found it visually attractive, easy to comprehend, and user-friendly. Conclusions: The findings revealed that Nest-CRC is a promising strategy for facilitating pretest education and promoting GT. Nest-CRC has been refined based on participant recommendations and will be re-evaluated. ", doi="10.2196/59464", url="https://cancer.jmir.org/2025/1/e59464" } @Article{info:doi/10.2196/59882, author="Hashtarkhani, Soheil and Zhou, Yiwang and Kumsa, Asefa Fekede and White-Means, Shelley and Schwartz, L. David and Shaban-Nejad, Arash", title="Analyzing Geospatial and Socioeconomic Disparities in Breast Cancer Screening Among Populations in the United States: Machine Learning Approach", journal="JMIR Cancer", year="2025", month="Jan", day="16", volume="11", pages="e59882", keywords="mammography", keywords="breast neoplasms", keywords="social determinants of health", keywords="geographic information systems", keywords="machine learning", abstract="Background: Breast cancer screening plays a pivotal role in early detection and subsequent effective management of the disease, impacting patient outcomes and survival rates. Objective: This study aims to assess breast cancer screening rates nationwide in the United States and investigate the impact of social determinants of health on these screening rates. Methods: Data on mammography screening at the census tract level for 2018 and 2020 were collected from the Behavioral Risk Factor Surveillance System. We developed a large-scale dataset of social determinants of health, comprising 13 variables for 72,337 census tracts. Spatial analysis employing Getis-Ord Gi statistics was used to identify clusters of high and low breast cancer screening rates. To evaluate the influence of these social determinants, we implemented a random forest model, with the aim of comparing its performance to linear regression and support vector machine models. The models were evaluated using R2 and root mean squared error metrics. Shapley Additive Explanations values were subsequently used to assess the significance of variables and direction of their influence. Results: Geospatial analysis revealed elevated screening rates in the eastern and northern United States, while central and midwestern regions exhibited lower rates. The random forest model demonstrated superior performance, with an R2=64.53 and root mean squared error of 2.06, compared to linear regression and support vector machine models. Shapley Additive Explanations values indicated that the percentage of the Black population, the number of mammography facilities within a 10-mile radius, and the percentage of the population with at least a bachelor's degree were the most influential variables, all positively associated with mammography screening rates. Conclusions: These findings underscore the significance of social determinants and the accessibility of mammography services in explaining the variability of breast cancer screening rates in the United States, emphasizing the need for targeted policy interventions in areas with relatively lower screening rates. ", doi="10.2196/59882", url="https://cancer.jmir.org/2025/1/e59882" } @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/10.2196/55043, author="Hemler, R. Jennifer and Wagner, B. Rachel and Sullivan, Brittany and Macenat, Myneka and Tagai, K. Erin and Vega, L. Jazmarie and Hernandez, Enrique and Miller, M. Suzanne and Wen, Kuang-Yi and Ayers, A. Charletta and Einstein, H. Mark and Hudson, V. Shawna and Kohler, E. Racquel", title="A Proposed mHealth Intervention to Address Patient Barriers to Colposcopy Attendance: Qualitative Interview Study of Clinic Staff and Patient Perspectives", journal="JMIR Form Res", year="2025", month="Jan", day="14", volume="9", pages="e55043", keywords="cervical cancer screening", keywords="colposcopy", keywords="HPV", keywords="human papillomavirus", keywords="mHealth", keywords="health communication", keywords="qualitative research", keywords="cancer screening", keywords="cancer", keywords="cervical cancer", keywords="screening", keywords="women", keywords="clinic staff", keywords="barrier", keywords="messaging", keywords="privacy", keywords="text message", keywords="qualitative", keywords="colposcopic", keywords="mhealth intervention", keywords="mobile phone", abstract="Background: Cervical cancer disparities persist among minoritized women due to infrequent screening and poor follow-up. Structural and psychosocial barriers to following up with colposcopy are problematic for minoritized women. Evidence-based interventions using patient navigation and tailored telephone counseling, including the Tailored Communication for Cervical Cancer Risk (TC3), have modestly improved colposcopy attendance. However, the efficacious TC3 intervention is human resource-intense and could have greater reach if adapted for mobile health, which increases convenience and access to health information. Objective: This study aimed to describe feedback from clinic staff members involved in colposcopy processes and patients referred for colposcopy regarding adaptions to the TC3 phone-based intervention to text messaging, which addresses barriers among those referred for colposcopy after abnormal screening results. Methods: Semistructured depth qualitative interviews were conducted over Zoom [Zoom Communications, Inc] or telephone with a purposive sample of 22 clinic staff members (including clinicians and support staff members) and 34 patients referred for colposcopy from 3 academic obstetrics and gynecology (OB-GYN) clinics that serve predominantly low-income, minoritized patients in different urban locations in New Jersey and Pennsylvania. Participants were asked about colposcopy attendance barriers and perspectives on a proposed text message intervention to provide tailored education and support in the time between abnormal cervical screening and colposcopy. The analytic team discussed interviews, wrote summaries, and consensus-coded transcripts, analyzing output for emergent findings and crystallizing themes. Results: Clinic staff members and patients had mixed feelings about a text-only intervention. They overwhelmingly perceived a need to provide patients with appointment reminders and information about abnormal cervical screening results and colposcopy purpose and procedure. Both groups also thought messages emphasizing that human papillomavirus is common and cervical cancer can be prevented with follow-up could enhance attendance. However, some had concerns about the privacy of text messages and text fatigue. Both groups thought that talking to clinic staff members was needed in certain instances; they proposed connecting patients experiencing complex psychosocial or structural barriers to staff members for additional information, psychological support, and help with scheduling around work and finding childcare and transportation solutions. They also identified inadequate scheduling and reminder systems as barriers. From this feedback, we revised our text message content and intervention design, adding a health coaching component to support patients with complex barriers and concerns. Conclusions: Clinic staff members and patient perspectives are critical for designing appropriate and relevant interventions. These groups conveyed that text message-only interventions may be useful for patients with lesser barriers who may benefit from reminders, basic educational information, and scheduling support. However, multimodal interventions may be necessary for patients with complex barriers to colposcopy attendance, which we intend to evaluate in a subsequent trial. ", doi="10.2196/55043", url="https://formative.jmir.org/2025/1/e55043", url="http://www.ncbi.nlm.nih.gov/pubmed/39808485" } @Article{info:doi/10.2196/58306, author="Hansen, Steffen and Jensen, Secher Tue and Schmidt, Mette Anne and Str{\o}m, Janni and Vistisen, Peter and H{\o}ybye, Terp Mette", title="The Effectiveness of Video Animations as a Tool to Improve Health Information Recall for Patients: Systematic Review", journal="J Med Internet Res", year="2024", month="Dec", day="30", volume="26", pages="e58306", keywords="public health", keywords="health information", keywords="patient information", keywords="animation video", keywords="digital health", keywords="visualization", keywords="memory", keywords="recall", keywords="education", keywords="synthesis", keywords="review methods", keywords="review methodology", keywords="systematic", keywords="PRISMA", abstract="Background: Access to clear and comprehensible health information is crucial for patient empowerment, leading to improved self-care, adherence to treatment plans, and overall health outcomes. Traditional methods of information delivery, such as written documents and oral communication, often result in poor memorization and comprehension. Recent innovations, such as animation videos, have shown promise in enhancing patient understanding, but comprehensive investigations into their effectiveness across various health care settings are lacking. Objective: This systematic review aims to investigate the effectiveness of animation videos on health information recall in adult patients across diverse health care sectors, comparing their impact to usual information delivery methods on short-term and long-term recall of health information. Methods: We conducted systematic searches in PubMed, CINAHL, and Embase databases, supplemented by manual searches of reference lists. Included studies were randomized controlled trials involving adult participants (?18 years) that focused on the use of animation videos to provide health information measured against usual information delivery practice. There were no language restrictions. Out of 2 independent reviewers screened studies, extracted data, and assessed the risk of bias using the Revised Cochrane risk-of-bias tool for randomized trials (RoB2), Covidence was used to handle screening and risk of bias process. A narrative synthesis approach was applied to present results. Results: A total of 15 randomized controlled trials---3 in the United States, 2 in France, 2 in Australia, 2 in Canada, and 1 in the United Kingdom, Japan, Singapore, Brazil, Austria, and T{\"u}rkiye, respectively---met the inclusion criteria, encompassing 2,454 patients across various health care settings. The majority of studies (11/15, 73\%) reported statistically significant improvements in health information recall when animation videos were used, compared with usual care. Animation videos ranged from 1 to 15 minutes in duration with the most common length ranging from 1 to 8 minutes (10/15) and used various styles including 2D cartoons, 3D computers, and whiteboard animations. Most studies (12/15) assessed information recall immediately after intervention, with only 3 studies including longer follow-up periods. Most studies exhibited some concerns related to the risk of bias, particularly in domains related to deviations from intended interventions and selection of reported results. Conclusions: Animation videos appear to significantly improve short-term recall of health information among adult patients across various health care settings compared with usual care. This suggests that animation videos could be a valuable tool for informing patients in different health care settings. However, further research is needed to explore the long-term efficacy of these interventions, their impact on diverse populations, and how different animation styles might affect information recall. Future studies should also address methodological limitations identified in current research, including the use of validated outcome measures and longer follow-up periods. Trial Registration: PROSPERO CRD42022380016; http://crd.york.ac.uk/prospero/display\_record.php?RecordID=380016 ", doi="10.2196/58306", url="https://www.jmir.org/2024/1/e58306" } @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/10.2196/48170, author="Lally, Phillippa and May, N. Christine and Mitchell, Siobhan E. and McCallum, Meaghan and Michaelides, Andreas and Fisher, Abigail", title="Prototype of an App Designed to Support Self-Management for Health Behaviors and Weight in Women Living With Breast Cancer: Qualitative User Experience Study", journal="JMIR Cancer", year="2024", month="Dec", day="20", volume="10", pages="e48170", keywords="breast cancer", keywords="self-management", keywords="app", keywords="health behaviors", keywords="weight", keywords="prototype", keywords="user experience", keywords="development", keywords="application", keywords="coaching", keywords="peer support", keywords="oncology", abstract="Background: Accessible self-management interventions are required to support people living with breast cancer. Objective: This was an industry-academic partnership study that aimed to collect qualitative user experience data of a prototype app with built-in peer and coach support designed to support the management of health behaviors and weight in women living with breast cancer. Methods: Participants were aged ?18 years, were diagnosed with breast cancer of any stage within the last 5 years, had completed active treatment, and were prescribed oral hormone therapy. Participants completed demographic surveys and were asked to use the app for 4 weeks. Following this, they took part in in-depth qualitative interviews about their experiences. These were analyzed using thematic analysis. Results: Eight participants (mean age, 45 years; mean time since diagnosis, 32 months) were included. Of the 8 participants, 7 (88\%) were white, 6 (75\%) had a graduate degree or above, and 6 (75\%) had stage I-III breast cancer. Four overarching themes were identified: (1) Support for providing an app earlier in the care pathway; (2) Desire for more weight-focused content tailored to the breast cancer experience; (3) Tracking of health behaviors that are generally popular; and (4) High value of in-app social support. Conclusions: This early user experience work showed that women with breast cancer found an app with integrated social and psychological support appealing to receive support for behavior change and weight management or self-management. However, many features were recommended for further development. This work is the first step in an academic-industry collaboration that would ultimately aim to develop and empirically test a supportive app that could be integrated into the cancer care pathway. ", doi="10.2196/48170", url="https://cancer.jmir.org/2024/1/e48170" } @Article{info:doi/10.2196/60033, author="Niu, Zheyu and Hao, Yijie and Yang, Faji and Jiang, Qirong and Jiang, Yupeng and Zhang, Shizhe and Song, Xie and Chang, Hong and Zhou, Xu and Zhu, Huaqiang and Gao, Hengjun and Lu, Jun", title="Quality of Pancreatic Neuroendocrine Tumor Videos Available on TikTok and Bilibili: Content Analysis", journal="JMIR Form Res", year="2024", month="Dec", day="11", volume="8", pages="e60033", keywords="pancreatic neuroendocrine tumors", keywords="short videos", keywords="quality analysis", keywords="TikTok", keywords="Bilibili", keywords="social media", abstract="Background: Disseminating disease knowledge through concise videos on various platforms is an innovative and efficient approach. However, it remains uncertain whether pancreatic neuroendocrine tumor (pNET)-related videos available on current short video platforms can effectively convey accurate and impactful information to the general public. Objective: Our study aims to extensively analyze the quality of pNET-related videos on TikTok and Bilibili, intending to enhance the development of pNET-related social media content to provide the general public with more comprehensive and suitable avenues for accessing pNET-related information. Methods: A total of 168 qualifying videos pertaining to pNETs were evaluated from the video-sharing platforms Bilibili and TikTok. Initially, the fundamental information conveyed in the videos was documented. Subsequently, we discerned the source and content type of each video. Following that, the Global Quality Scale (GQS) and modified DISCERN (mDISCERN) scale were employed to appraise the educational value and quality of each video. A comparative evaluation was conducted on the videos obtained from these two platforms. Results: The number of pNET-related videos saw a significant increase since 2020, with 9 videos in 2020, 19 videos in 2021, 29 videos in 2022, and 106 videos in 2023. There were no significant improvements in the mean GQS or mDISCERN scores from 2020 to 2023, which were 3.22 and 3.00 in 2020, 3.33 and 2.94 in 2021, 2.83 and 2.79 in 2022, and 2.78 and 2.94 in 2023, respectively. The average quality scores of the videos on Bilibili and Tiktok were comparable, with GQS and mDISCERN scores of 2.98 on Bilibili versus 2.77 on TikTok and 2.82 on Bilibili versus 3.05 on TikTok, respectively. The source and format of the videos remained independent factors affecting the two quality scores. Videos that were uploaded by professionals (hazard ratio=7.02, P=.002) and recorded in specialized popular science formats (hazard ratio=12.45, P<.001) tended to exhibit superior quality. Conclusions: This study demonstrates that the number of short videos on pNETs has increased in recent years, but video quality has not improved significantly. This comprehensive analysis shows that the source and format of videos are independent factors affecting video quality, which provides potential measures for improving the quality of short videos. ", doi="10.2196/60033", url="https://formative.jmir.org/2024/1/e60033" } @Article{info:doi/10.2196/63892, author="Cho, Seungbeom and Lee, Mangyeong and Yu, Jaewook and Yoon, Junghee and Choi, Jae-Boong and Jung, Kyu-Hwan and Cho, Juhee", title="Leveraging Large Language Models for Improved Understanding of Communications With Patients With Cancer in a Call Center Setting: Proof-of-Concept Study", journal="J Med Internet Res", year="2024", month="Dec", day="11", volume="26", pages="e63892", keywords="large language model", keywords="cancer", keywords="supportive care", keywords="LLMs", keywords="patient communication", keywords="natural language processing", keywords="NLP", keywords="self-management", keywords="teleconsultation", keywords="triage services", keywords="telephone consultations", abstract="Background: Hospital call centers play a critical role in providing support and information to patients with cancer, making it crucial to effectively identify and understand patient intent during consultations. However, operational efficiency and standardization of telephone consultations, particularly when categorizing diverse patient inquiries, remain significant challenges. While traditional deep learning models like long short-term memory (LSTM) and bidirectional encoder representations from transformers (BERT) have been used to address these issues, they heavily depend on annotated datasets, which are labor-intensive and time-consuming to generate. Large language models (LLMs) like GPT-4, with their in-context learning capabilities, offer a promising alternative for classifying patient intent without requiring extensive retraining. Objective: This study evaluates the performance of GPT-4 in classifying the purpose of telephone consultations of patients with cancer. In addition, it compares the performance of GPT-4 to that of discriminative models, such as LSTM and BERT, with a particular focus on their ability to manage ambiguous and complex queries. Methods: We used a dataset of 430,355 sentences from telephone consultations with patients with cancer between 2016 and 2020. LSTM and BERT models were trained on 300,000 sentences using supervised learning, while GPT-4 was applied using zero-shot and few-shot approaches without explicit retraining. The accuracy of each model was compared using 1,000 randomly selected sentences from 2020 onward, with special attention paid to how each model handled ambiguous or uncertain queries. Results: GPT-4, which uses only a few examples (a few shots), attained a remarkable accuracy of 85.2\%, considerably outperforming the LSTM and BERT models, which achieved accuracies of 73.7\% and 71.3\%, respectively. Notably, categories such as ``Treatment,'' ``Rescheduling,'' and ``Symptoms'' involve multiple contexts and exhibit significant complexity. GPT-4 demonstrated more than 15\% superior performance in handling ambiguous queries in these categories. In addition, GPT-4 excelled in categories like ``Records'' and ``Routine,'' where contextual clues were clear, outperforming the discriminative models. These findings emphasize the potential of LLMs, particularly GPT-4, for interpreting complicated patient interactions during cancer-related telephone consultations. Conclusions: This study shows the potential of GPT-4 to significantly improve the classification of patient intent in cancer-related telephone oncological consultations. GPT-4's ability to handle complex and ambiguous queries without extensive retraining provides a substantial advantage over discriminative models like LSTM and BERT. While GPT-4 demonstrates strong performance in various areas, further refinement of prompt design and category definitions is necessary to fully leverage its capabilities in practical health care applications. Future research will explore the integration of LLMs like GPT-4 into hybrid systems that combine human oversight with artificial intelligence--driven technologies. ", doi="10.2196/63892", url="https://www.jmir.org/2024/1/e63892" } @Article{info:doi/10.2196/60283, author="Muenster, Mika Roxana and Gangi, Kai and Margolin, Drew", title="Alternative Health and Conventional Medicine Discourse About Cancer on TikTok: Computer Vision Analysis of TikTok Videos", journal="J Med Internet Res", year="2024", month="Dec", day="9", volume="26", pages="e60283", keywords="misinformation", keywords="social media", keywords="TikTok", keywords="alternative health", keywords="cancer", keywords="computer vision", abstract="Background: Health misinformation is abundant online and becoming an increasingly pressing concern for both oncology practitioners and patients with cancer. On social media platforms, including the popular audiovisual app TikTok, the flourishing alternative health industry is further contributing to the spread of misleading and often harmful information, endangering patients' health and outcomes and sowing distrust of the medical community. The prevalence of false and potentially dangerous treatments on a platform that is used as a quasi--search engine by young people poses a serious risk to the health of patients with cancer. Objective: This study seeks to examine how cancer discourse on TikTok differs between alternative health and conventional medicine videos. It aims to look beyond mere facts and falsehoods that TikTok users may utter to understand the visual language and format used in the support of both misleading and truthful narratives, as well as other messages. Methods: Using computer vision analysis and subsequent qualitative close reading of 831 TikTok videos, this study examined how alternative health and conventional medicine videos on cancer differ with regard to the visual language used. Videos were examined for the length of time and prominence in which faces are displayed, as well as for the background setting, location, and dominant color scheme. Results: The results show that the alt-health and conventional health samples made different use of the audiovisual affordances of TikTok. First, videos from the alternative health sample were more likely to contain a single face that was prominently featured (making up at least 7.5\% of the image) for a substantial period of time (35\% of the shots), with these testimonial-style videos making up 28.5\% (93/326) of the sample compared to 18.6\% (94/505) of the conventional medicine sample. Alternative health videos predominantly featured cool tones (P<.001) and were significantly more likely to be filmed outdoors (P<.001), whereas conventional medicine videos were more likely to be shot indoors and feature warm tones such as red, orange, or yellow. Conclusions: The findings of this study contribute to an increased understanding of misinformation as not merely a matter of individual falsehoods but also a phenomenon whose effects might be transported through emotive as well as rational means. They also point to influencer practices and style being an important contributing factor in the declining health of the information environment around cancer and its treatment. The results suggest that public health efforts must extend beyond correcting false statements by injecting factual information into the online cancer discourse and look toward incorporating both visual and rational strategies. ", doi="10.2196/60283", url="https://www.jmir.org/2024/1/e60283" } @Article{info:doi/10.2196/53834, author="McCann, Lisa and Lewis, Liane and Oduntan, Olubukola and Harris, Jenny and Darley, Andrew and Berg, V. Geir and Lubowitzki, Simone and Cheevers, Katy and Miller, Morven and Armes, Jo and Ream, Emma and Fox, Patricia and Furlong, Patricia Eileen and Gaiger, Alexander and Kotronoulas, Grigorios and Patiraki, Elisabeth and Katsaragakis, Stylianos and McCrone, Paul and Miaskowski, Christine and Cardone, Antonella and Orr, Dawn and Flowerday, Adrian and Skene, Simon and Moore, Margaret and De Souza, Nicosha and Donnan, Peter and Maguire, Roma", title="Patients' and Clinicians' Experiences Using a Real-Time Remote Monitoring System for Chemotherapy Symptom Management (ASyMS): Qualitative Study", journal="J Med Internet Res", year="2024", month="Dec", day="3", volume="26", pages="e53834", keywords="cancer", keywords="clinician experiences", keywords="digital interventions", keywords="patient experiences", keywords="remote monitoring", keywords="qualitative methods", abstract="Background: Patients receiving chemotherapy require ongoing symptom monitoring and management to optimize their outcomes. In recent years, digital remote monitoring interventions have emerged to provide enhanced cancer care delivery experiences to patients and clinicians. However, patient and clinician experiential evaluations of these technologies are rare. Therefore, we explored user experiences and perceptions of one such intervention---Advanced Symptom Management System (ASyMS)---after its scaled deployment in the context of the Electronic Symptom Management System Remote Technology (eSMART) trial. The eSMART trial was a large, multicenter randomized controlled trial to evaluate the efficacy of ASyMS in 12 clinical sites in 5 European countries. Objective: In this qualitative study, both patients' and clinicians' experiences of using ASyMS for up to 6 cycles of chemotherapy were explored to understand the impact of ASyMS on patients' experiences, clinical practice, and supportive care delivery. Methods: For this analysis, individual, semistructured, one-to-one interviews with 29 patients with breast, colorectal, and hematological cancers and 18 clinicians from Austria, Greece, Ireland, Norway, and the United Kingdom were conducted. Interviews focused on patients' and clinicians' experiences of using ASyMS, care organization and changes in practice following the introduction of ASyMS, perceived changes in care associated with the use of ASyMS, and its potential for future integration into routine chemotherapy care pathways. Results: Thematic analysis identified several themes that describe patients' and clinicians' experiences using ASyMS. One central orienting theme---ASyMS as a facilitator of change---was supported by 5 key themes associated with human and technology monitoring: reassurance, enhanced communications and relationships, knowing what is ``normal'' and what is to be expected, enhancing cancer care experiences, and informing future cancer care. Conclusions: This study is the first to evaluate both patients' and clinicians' experiences of using a digital health intervention to remotely monitor chemotherapy symptoms across 5 countries. Experiences with ASyMS were positive from both patients' and clinicians' perspectives, although some improvements to support the wider-scale rollout and sustained implementation were identified. Overall, this study demonstrates that real-time remote monitoring systems can help patients feel more reassured during their chemotherapy treatments and can help clinicians provide the right care, at the right time, and in the right place. Trial Registration: ClinicalTrials.gov NCT02356081; https://clinicaltrials.gov/study/NCT02356081 International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2016-015016 ", doi="10.2196/53834", url="https://www.jmir.org/2024/1/e53834" } @Article{info:doi/10.2196/47856, author="Baxter-King, Ryan and Naeim, Arash and Huang, Q. Tina and Sepucha, Karen and Stanton, Annette and Rudkin, Aaron and Ryu, Rita and Sabacan, Leah and Vavreck, Lynn and Esserman, Laura and Stover Fiscalini, Allison and Wenger, S. Neil", title="Relationship Between Perceived COVID-19 Risk and Change in Perceived Breast Cancer Risk: Prospective Observational Study", journal="JMIR Cancer", year="2024", month="Dec", day="2", volume="10", pages="e47856", keywords="breast cancer", keywords="COVID-19 risk perception", keywords="cancer screening", keywords="anxiety", keywords="cancer", keywords="COVID-19", keywords="prevention", keywords="medical care", keywords="screening", keywords="survey", abstract="Background: Whether COVID-19 is associated with a change in risk perception about other health conditions is unknown. Because COVID-19 occurred during a breast cancer study, we evaluated the effect of COVID-19 risk perception on women's breast cancer risk perception. Objective: This study aims to evaluate the relationship between perceived risk of COVID-19 and change in perceived breast cancer risk. We hypothesized that women who perceived greater COVID-19 risk would evidence increased perceived breast cancer risk and this risk would relate to increased anxiety and missed cancer screening. Methods: Women aged 40-74 years with no breast cancer history were enrolled in a US breast cancer prevention trial in outpatient settings. They had provided breast cancer risk perception and general anxiety before COVID-19. We performed a prospective observational study of the relationship between the perceived risk of COVID-19 and the change in perceived breast cancer risk compared to before the pandemic. Each woman was surveyed up to 4 times about COVID-19 and breast cancer risk perception, general anxiety, and missed medical care early in COVID-19 (May to December 2020). Results: Among 13,002 women who completed a survey, compared to before COVID-19, anxiety was higher during COVID-19 (mean T score 53.5 vs 49.7 before COVID-19; difference 3.8, 95\% CI 3.6-4.0; P<.001) and directly related to perceived COVID-19 risk. In survey wave 1, anxiety increased by 2.3 T score points for women with very low perceived COVID-19 risk and 5.2 points for those with moderately or very high perceived COVID-19 risk. Despite no overall difference in breast cancer risk perception (mean 32.5\% vs 32.5\% before COVID-19; difference 0.24, 95\% CI --0.47 to 0.52; P=.93), there was a direct relationship between change in perceived breast cancer risk with COVID-19 risk perception, ranging in survey wave 4 from a 2.4\% decrease in breast cancer risk perception for those with very low COVID-19 risk perception to a 3.4\% increase for women with moderately to very high COVID-19 risk perception. This was not explained by the change in anxiety or missed cancer screening. After adjustment for age, race, education, and survey wave, compared to women with very low perceived COVID-19 risk, perceived breast cancer risk increased by 1.54\% (95\% CI 0.75\%-2.33\%; P<.001), 4.28\% (95\% CI 3.30\%-5.25\%; P<.001), and 3.67\% (95\% CI 1.94\%-5.40\%; P<.001) for women with moderately low, neither high nor low, and moderately or very high perceived COVID-19 risk, respectively. Conclusions: Low perceived COVID-19 risk was associated with reduced perceived breast cancer risk, and higher levels of perceived COVID-19 risk were associated with increased perceived breast cancer risk. This natural experiment suggests that a threat such as COVID-19 may have implications beyond the pandemic. Preventive health behaviors related to perceived risk may need attention as COVID-19 becomes endemic. ", doi="10.2196/47856", url="https://cancer.jmir.org/2024/1/e47856" } @Article{info:doi/10.2196/53440, author="Blank, Ann Carol and Biedka, Sarah and Montalmant, Abigail and Saft, Katelyn and Lape, Miranda and Mao, Kate and Bradt, Joke and Liou, T. Kevin", title="Scope, Findability, and Quality of Information About Music-Based Interventions in Oncology: Quantitative Content Analysis of Public-Facing Websites at National Cancer Institute--Designated Cancer Centers", journal="JMIR Cancer", year="2024", month="Nov", day="22", volume="10", pages="e53440", keywords="music-based interventions", keywords="cancer", keywords="oncology", keywords="symptom management", keywords="music therapy", keywords="music services", keywords="National Cancer Institute", abstract="Background: Music-based interventions (MBIs) are evidence-based, nonpharmacological treatments that include music therapy (MT) delivered by board-certified music therapists, as well as music services (MS) delivered by other health professionals and volunteers. Despite MBI's growing evidence base in cancer symptom management, it remains unclear how MBI-related information is presented to the public. Over 80\% of people with cancer use the internet to find health-related information. In the United States, the National Cancer Institute (NCI) identifies certain Cancer Centers (CCs) as NCI-designated CCs or Comprehensive Cancer Centers (CCCs) based on their excellence in research. As NCI-designated CCs and CCCs are considered the gold standard in cancer care, their websites are viewed by the public as important sources of information. Objective: We aimed to determine scope, findability, and quality of MBI-related information on public-facing websites of NCI-designated CCs/CCCs. Methods: We reviewed 64 NCI-designated CC/CCC websites (excluding basic laboratories) between November 2022 and January 2023. We extracted data on the scope of information: (1) type of MBI offered (MT or MS), (2) format (individual, group), (3) method of delivery (in person or remotely delivered), (4) setting (inpatient or outpatient), (5) target population (pediatric or adult), (6) MBI practitioner qualifications, (7) clinical indications or benefits, (8) presence of testimonials, (9) cost, and (10) scheduling or referral information. We also extracted data on findability (ie, presence of direct link or drop-down menu and the number of clicks to locate MBI-related information). Based on the scope and findability data, we rated the information quality as high, moderate, or low using an adapted scale informed by prior research. Results: Thirty-one (48\%) of the 64 CC/CCCs described MBIs on their websites. Of these, 6 (19\%) mentioned both MT and MS, 16 (52\%) mentioned MT only, and 9 (29\%) mentioned MS only. The most common format was hybrid, involving individuals and groups (n=20, 65\%). The most common delivery method was in person (n=16, 52\%). The most common target population was adults (n=12, 39\%). The most common MBI practitioners were board-certified music therapists (n=21, 68\%). The most described indications or benefits were psychological. Twenty-eight (90\%) websites lacked testimonials, and 26 (84\%) lacked cost information. Twenty-six (84\%) websites provided scheduling or referral information. MBI-related information was found with an average of 4 (SD 1) clicks. Nine (29\%) websites were of high quality, 18 (58\%) were moderate, and 4 (13\%) were low. Conclusions: Based on public websites, MBIs were most commonly delivered in person by board-certified music therapists to outpatient and inpatient adults, using individual and group formats to provide psychological benefits. The findability and quality of this information should be improved to promote the dissemination of MBIs for cancer symptom management. ", doi="10.2196/53440", url="https://cancer.jmir.org/2024/1/e53440" } @Article{info:doi/10.2196/56475, author="Tian, Xiaojuan and Liu, Yan and Zhang, Jiahua and Yang, Lixiao and Feng, Linyao and Qi, Aidong and Liu, Hanjiazi and Liu, Pengju and Li, Ying", title="Efficacy of a WeChat-Based, Multidisciplinary, Full-Course Nutritional Management Program on the Nutritional Status of Patients With Ovarian Cancer Undergoing Chemotherapy: Randomized Controlled Trial", journal="JMIR Mhealth Uhealth", year="2024", month="Nov", day="4", volume="12", pages="e56475", keywords="WeChat", keywords="nutrition management", keywords="ovarian cancer", keywords="chemotherapy", keywords="mobile health", abstract="Background: As the most malignant type of cancer in the female reproductive system, ovarian cancer (OC) has become the second leading cause of death among Chinese women. Chemotherapy is the main treatment for patients with OC, and its numerous adverse effects can easily lead to malnutrition. It is difficult to centrally manage patients with OC in the intervals between chemotherapy. The use of WeChat, an effective mobile tool, in chronic disease management has been highlighted. Objective: This study aimed to implement a continuous follow-up strategy and health monitoring based on the WeChat platform for patients with OC undergoing chemotherapy to ensure that each phase of chemotherapy was delivered on schedule and to improve the survival rate of patients with OC. Methods: Participants were recruited and randomly assigned to either the WeChat-based nutrition intervention group or the usual care group. A self-administered general information questionnaire was used at enrollment to obtain basic information about the patients. The Patient-Generated Subjective Global Assessment (PG-SGA) Scale was used to investigate the nutritional status of the patients at 3 time points (T0=before the first admission to the hospital for chemotherapy, T1=2 weeks after the first chemotherapy, and T6=2 weeks after the sixth chemotherapy). The blood indices of patients were investigated through the inhospital health care system at 3 times?T0=before the first admission to the hospital for chemotherapy, T1=2 weeks after the first chemotherapy, and T6=2 weeks after the sixth chemotherapy). Patients in the intervention group were introduced to the nutrition applet, invited to join the nutrition management group chat, and allowed to consult on nutritional issues in private chats with nutrition management team members. Linear mixed models were used to analyze changes in each nutritional indicator in the 2 groups, with their baseline measurements as covariates; with group, time, and group-time interactions considered as fixed effects; and with patients considered as random effects. Results: A total of 96 patients with OC undergoing chemotherapy were recruited into the study. Distribution was based on a 1:1 ratio, with 48 patients each in the nutrition intervention group and the usual care group. The attrition rate after the first chemotherapy session was 18.75\%. The mixed linear model revealed that the group-based effect and the group-time interaction effect on PG-SGA scores were significant (F38,38=4.763, P=.03; F37,37=6.368, P=.01), whereas the time-based effect on PG-SGA scores was not (F38,38=0.377; P=.54). The findings indicated that the group-based effect, the time-based effect, and the group-time interaction effect on nutrition-inflammation composite indices were significant (F38,38=7.653, P=.006; F38,38=13.309, P<.001; F37,37=92.304, P<.001; F37,38=110.675, P<.001; F38,38=10.379, P=.002; and F37,37=5.289, P=.02). Conclusions: This study provided evidence that a WeChat-based, multidisciplinary, full-course nutritional management program can significantly improve the nutritional status of patients with OC during chemotherapy. Trial Registration: ClinicalTrials.gov NCT06379191; https://clinicaltrials.gov/study/NCT06379191 ", doi="10.2196/56475", url="https://mhealth.jmir.org/2024/1/e56475" } @Article{info:doi/10.2196/53443, author="Lopez-Olivo, A. Maria and Suarez-Almazor, E. Maria and Duhon, F. Gabrielle and Cherry, McKenna and Lu, Huifang and Calabrese, Cassandra and Altan, Mehmet and Tawbi, Hussain and Meara, Alexa and Bingham, O. Clifton and Diab, Adi and Leal, B. Viola and Volk, J. Robert", title="Development of an Educational Website for Patients With Cancer and Preexisting Autoimmune Diseases Considering Immune Checkpoint Blockers: Usability and Acceptability Study", journal="JMIR Cancer", year="2024", month="Oct", day="25", volume="10", pages="e53443", keywords="immune checkpoint inhibitors", keywords="patient education", keywords="usability testing", keywords="cancer", keywords="autoimmune diseases", keywords="mobile phones", keywords="user testing", keywords="usability", keywords="user experience", keywords="immunotherapy", keywords="websites", keywords="development", keywords="acceptability", keywords="autoimmune", keywords="immunology", keywords="oncology", keywords="architecture", keywords="iterative", keywords="vasculitis", keywords="Crohn disease", keywords="Sjogren syndrome", keywords="educational", keywords="web-based resource", keywords="health information", keywords="rheumatology", keywords="arthritis", keywords="web design", keywords="eHealth", keywords="adverse events", keywords="patient care", keywords="treatment", abstract="Background: Patients with cancer and an underlying autoimmune disease who are considering immune checkpoint blockers (ICBs) need to know about the benefits and risks of severe immune-related adverse events and flares of the autoimmune condition. Objective: This study aims to develop and alpha test an educational website for patients with cancer. Methods: Learning topics, images, and website architecture (including flow and requirements) were developed and iteratively reviewed by members of a community scientist program, a patient advisory group, and content experts. Alpha testing was performed, measuring the site's usability using the Suitability Assessment of Materials and its acceptability using the Ottawa Acceptability Measure. Results: The website included a home page; general information about ICBs; comprehensive modules on the benefits and risks of ICBs for patients with cancer and preexisting autoimmune diseases; general wellness information; and features such as a quiz, additional resources, and a glossary. For the alpha testing, 9 users assessed the newly developed website. Patient reviewers (n=5) had rheumatoid arthritis, Crohn disease, Sjogren syndrome, or vasculitis. Health care provider reviewers (n=4) were medical oncologists or rheumatologists. The median Suitability Assessment of Materials rating was 75 (IQR 70-79; range 0-100) for patients versus 66 (IQR 57-72; range 0-100) for providers (scores ?70 indicate no substantial changes needed). Recommendations for improvement, mostly involving navigation and accessibility, were addressed. All participants expressed that the website was acceptable and balanced in terms of discussion of benefits and harms. Because half (2/4, 50\%) of the providers suggested we increase the amount of information, we extended the content on the impact of having an autoimmune disease when considering ICB treatment, the probability of flares, and the management of flares in this context. Conclusions: The feedback led to minor revisions to enhance readability, navigation, and accessibility, ensuring the website's suitability as a decision-making aid. The newly developed website could become a supporting tool to facilitate patient-physician discussion regarding ICBs. ", doi="10.2196/53443", url="https://cancer.jmir.org/2024/1/e53443" } @Article{info:doi/10.2196/54914, author="Deribe, Leul and Girma, Eshetu and Lindstr{\"o}m, Nataliya and Gidey, Abdulkadir and Teferra, Solomon and Addissie, Adamu", title="Parent Education and Counseling (PairEd-C) Intervention to Improve Family-Centered Care: Protocol for a Prospective Acceptability Study Using the Theoretical Framework of Acceptability", journal="JMIR Res Protoc", year="2024", month="Oct", day="4", volume="13", pages="e54914", keywords="family-centered care", keywords="child cancer", keywords="theoretical framework of acceptability", keywords="education and counseling", keywords="acceptability", keywords="parent education", keywords="family centered", keywords="care service", keywords="theoretical framework", keywords="study protocol", keywords="family", keywords="health care", keywords="well-being", keywords="children", keywords="implementation", keywords="design intervention", abstract="Background: Family-centered care (FCC) is an intervention approach based on a respectful relationship between family and health care providers (HCPs) to ensure the health and well-being of children and their families. Although HCPs have a better perception of FCC, the level of its implementation is low. Reasons for low implementation include limited understanding, lack of training, and lack of implementation guidelines and tools to support implementation. Thus, we developed the Parent Education and Counseling (PairEd-C) intervention to improve FCC in pediatric oncology settings and assess its acceptability. Objective: The objective of this study is to assess the prospective acceptability of the PairEd-C intervention using the theoretical framework of acceptability (TFA) in the pediatric oncology department in a tertiary hospital in Ethiopia. Methods: The study was conducted using an exploratory qualitative study design. We aimed to recruit 10 to 15 participants for the in-depth interview. The study participants were health service leaders working in child cancer, HCPs, social workers, and parents of children with cancer. The intervention was developed using the integration of the first phase of the Medical Research Council (MRC) framework for developing and testing complex interventions and the behavior change wheel (BCW) framework. The main PairEd-C intervention components align with the intervention functions of education, persuasion, training, environmental restructuring, modeling, and enablement, which were intended to improve FCC in the pediatric oncology unit by providing structured and comprehensive education and counseling of parents of children with cancer. The intervention was implemented by providing training for the health care team, facilitating discussion among HCPs and setting a shared plan, improving the commitment of the health care team, providing education for parents, improving parents' capacity to attend the intervention sessions, arranging discussion among parents of children with cancer, and provision of education and counseling on distress. The HCPs working in the unit received training on the designed intervention. The trained educators and the health care provider delivered the intervention. Data will be analyzed using deductive thematic coding with a framework analysis technique based on the 7 TFA constructs. Atlas ti. version 9 will be used for data analysis. Results: Funding was acquired in 2017, and ethical clearance for conducting the study was obtained. We conducted the interviews with the study participants from December 2023 to January 2024. As of the acceptance of this protocol (June 2024), 12 study participants were interviewed. The data analysis process was started subsequently, and the manuscript will be completed and submitted for publication in early 2025. Conclusions: This acceptability study is expected to show that the designed intervention is acceptable to study participants, and the findings will be used to improve the intervention before progressing to the next step of our project. International Registered Report Identifier (IRRID): DERR1-10.2196/54914 ", doi="10.2196/54914", url="https://www.researchprotocols.org/2024/1/e54914", url="http://www.ncbi.nlm.nih.gov/pubmed/39365661" } @Article{info:doi/10.2196/56048, author="Hoadley, Ariel and Fleisher, Linda and Kenny, Cassidy and Kelly, JA Patrick and Ma, Xinrui and Wu, Jingwei and Guerra, Carmen and Leader, E. Amy and Alhajji, Mohammed and D'Avanzo, Paul and Landau, Zoe and Bass, Bauerle Sarah", title="Exploring Racial Disparities in Awareness and Perceptions of Oncology Clinical Trials: Cross-Sectional Analysis of Baseline Data From the mychoice Study", journal="JMIR Cancer", year="2024", month="Sep", day="30", volume="10", pages="e56048", keywords="oncology clinical trial", keywords="cancer", keywords="decision-making", keywords="racial disparity", keywords="medical mistrust", abstract="Background: Black/African American adults are underrepresented in oncology clinical trials in the United States, despite efforts at narrowing this disparity. Objective: This study aims to explore differences in how Black/African American oncology patients perceive clinical trials to improve support for the clinical trial participation decision-making process. Methods: As part of a larger randomized controlled trial, a total of 244 adult oncology patients receiving active treatment or follow-up care completed a cross-sectional baseline survey on sociodemographic characteristics, clinical trial knowledge, health literacy, perceptions of cancer clinical trials, patient activation, patient advocacy, health care self-efficacy, decisional conflict, and clinical trial intentions. Self-reported race was dichotomized into Black/African American and non--Black/African American. As appropriate, 2-tailed t tests and chi-square tests of independence were used to examine differences between groups. Results: Black/African American participants had lower clinical trial knowledge (P=.006), lower health literacy (P<.001), and more medical mistrust (all P values <.05) than non--Black/African American participants. While intentions to participate in a clinical trial, if offered, did not vary between Black/African American and non--Black/African American participants, Black/African American participants indicated lower awareness of clinical trials, fewer benefits of clinical trials, and more uncertainty around clinical trial decision-making (all P values <.05). There were no differences for other variables. Conclusions: Despite no significant differences in intent to participate in a clinical trial if offered and high overall trust in individual health care providers among both groups, beliefs persist about barriers to and benefits of clinical trial participation among Black/African American patients. Findings highlight specific ways that education and resources about clinical trials could be tailored to better suit the informational and decision-making needs and preferences of Black/African American oncology patients. ", doi="10.2196/56048", url="https://cancer.jmir.org/2024/1/e56048" } @Article{info:doi/10.2196/55939, author="Gibson, Damien and Jackson, Stuart and Shanmugasundaram, Ramesh and Seth, Ishith and Siu, Adrian and Ahmadi, Nariman and Kam, Jonathan and Mehan, Nicholas and Thanigasalam, Ruban and Jeffery, Nicola and Patel, I. Manish and Leslie, Scott", title="Evaluating the Efficacy of ChatGPT as a Patient Education Tool in Prostate Cancer: Multimetric Assessment", journal="J Med Internet Res", year="2024", month="Aug", day="14", volume="26", pages="e55939", keywords="prostate cancer", keywords="patient education", keywords="large language model", keywords="ChatGPT", keywords="AI language model", keywords="multimetric assessment", keywords="artificial intelligence", keywords="AI", keywords="AI chatbots", keywords="health care professional", keywords="health care professionals", keywords="men", keywords="man", keywords="prostate", keywords="cancer", keywords="decision-making", keywords="prostate specific", keywords="antigen screening", keywords="medical information", keywords="natural language processing", keywords="NLP", abstract="Background: Artificial intelligence (AI) chatbots, such as ChatGPT, have made significant progress. These chatbots, particularly popular among health care professionals and patients, are transforming patient education and disease experience with personalized information. Accurate, timely patient education is crucial for informed decision-making, especially regarding prostate-specific antigen screening and treatment options. However, the accuracy and reliability of AI chatbots' medical information must be rigorously evaluated. Studies testing ChatGPT's knowledge of prostate cancer are emerging, but there is a need for ongoing evaluation to ensure the quality and safety of information provided to patients. Objective: This study aims to evaluate the quality, accuracy, and readability of ChatGPT-4's responses to common prostate cancer questions posed by patients. Methods: Overall, 8 questions were formulated with an inductive approach based on information topics in peer-reviewed literature and Google Trends data. Adapted versions of the Patient Education Materials Assessment Tool for AI (PEMAT-AI), Global Quality Score, and DISCERN-AI tools were used by 4 independent reviewers to assess the quality of the AI responses. The 8 AI outputs were judged by 7 expert urologists, using an assessment framework developed to assess accuracy, safety, appropriateness, actionability, and effectiveness. The AI responses' readability was assessed using established algorithms (Flesch Reading Ease score, Gunning Fog Index, Flesch-Kincaid Grade Level, The Coleman-Liau Index, and Simple Measure of Gobbledygook [SMOG] Index). A brief tool (Reference Assessment AI [REF-AI]) was developed to analyze the references provided by AI outputs, assessing for reference hallucination, relevance, and quality of references. Results: The PEMAT-AI understandability score was very good (mean 79.44\%, SD 10.44\%), the DISCERN-AI rating was scored as ``good'' quality (mean 13.88, SD 0.93), and the Global Quality Score was high (mean 4.46/5, SD 0.50). Natural Language Assessment Tool for AI had pooled mean accuracy of 3.96 (SD 0.91), safety of 4.32 (SD 0.86), appropriateness of 4.45 (SD 0.81), actionability of 4.05 (SD 1.15), and effectiveness of 4.09 (SD 0.98). The readability algorithm consensus was ``difficult to read'' (Flesch Reading Ease score mean 45.97, SD 8.69; Gunning Fog Index mean 14.55, SD 4.79), averaging an 11th-grade reading level, equivalent to 15- to 17-year-olds (Flesch-Kincaid Grade Level mean 12.12, SD 4.34; The Coleman-Liau Index mean 12.75, SD 1.98; SMOG Index mean 11.06, SD 3.20). REF-AI identified 2 reference hallucinations, while the majority (28/30, 93\%) of references appropriately supplemented the text. Most references (26/30, 86\%) were from reputable government organizations, while a handful were direct citations from scientific literature. Conclusions: Our analysis found that ChatGPT-4 provides generally good responses to common prostate cancer queries, making it a potentially valuable tool for patient education in prostate cancer care. Objective quality assessment tools indicated that the natural language processing outputs were generally reliable and appropriate, but there is room for improvement. ", doi="10.2196/55939", url="https://www.jmir.org/2024/1/e55939" } @Article{info:doi/10.2196/55937, author="Zhao, Keyang and Li, Xiaojing and Li, Jingyang", title="Cancer Prevention and Treatment on Chinese Social Media: Machine Learning--Based Content Analysis Study", journal="J Med Internet Res", year="2024", month="Aug", day="14", volume="26", pages="e55937", keywords="social media", keywords="cancer information", keywords="text mining", keywords="supervised machine learning", keywords="content analysis", abstract="Background: Nowadays, social media plays a crucial role in disseminating information about cancer prevention and treatment. A growing body of research has focused on assessing access and communication effects of cancer information on social media. However, there remains a limited understanding of the comprehensive presentation of cancer prevention and treatment methods across social media platforms. Furthermore, research comparing the differences between medical social media (MSM) and common social media (CSM) is also lacking. Objective: Using big data analytics, this study aims to comprehensively map the characteristics of cancer treatment and prevention information on MSM and CSM. This approach promises to enhance cancer coverage and assist patients in making informed treatment decisions. Methods: We collected all posts (N=60,843) from 4 medical WeChat official accounts (accounts with professional medical backgrounds, classified as MSM in this paper) and 5 health and lifestyle WeChat official accounts (accounts with nonprofessional medical backgrounds, classified as CSM in this paper). We applied latent Dirichlet allocation topic modeling to extract cancer-related posts (N=8427) and identified 6 cancer themes separately in CSM and MSM. After manually labeling posts according to our codebook, we used a neural-based method for automated labeling. Specifically, we framed our task as a multilabel task and utilized different pretrained models, such as Bidirectional Encoder Representations from Transformers (BERT) and Global Vectors for Word Representation (GloVe), to learn document-level semantic representations for labeling. Results: We analyzed a total of 4479 articles from MSM and 3948 articles from CSM related to cancer. Among these, 35.52\% (2993/8427) contained prevention information and 44.43\% (3744/8427) contained treatment information. Themes in CSM were predominantly related to lifestyle, whereas MSM focused more on medical aspects. The most frequently mentioned prevention measures were early screening and testing, healthy diet, and physical exercise. MSM mentioned vaccinations for cancer prevention more frequently compared with CSM. Both types of media provided limited coverage of radiation prevention (including sun protection) and breastfeeding. The most mentioned treatment measures were surgery, chemotherapy, and radiotherapy. Compared with MSM (1137/8427, 13.49\%), CSM (2993/8427, 35.52\%) focused more on prevention. Conclusions: The information about cancer prevention and treatment on social media revealed a lack of balance. The focus was primarily limited to a few aspects, indicating a need for broader coverage of prevention measures and treatments in social media. Additionally, the study's findings underscored the potential of applying machine learning to content analysis as a promising research approach for mapping key dimensions of cancer information on social media. These findings hold methodological and practical significance for future studies and health promotion. ", doi="10.2196/55937", url="https://www.jmir.org/2024/1/e55937" } @Article{info:doi/10.2196/57762, author="Kim, Sunghak and Jung, Timothy and Sohn, Kyung Dae and Suh, Mina and Chang, Jung Yoon", title="Factors Associated With Continuous Use of a Cancer Education Metaverse Platform: Mixed Methods Study", journal="J Med Internet Res", year="2024", month="Jul", day="15", volume="26", pages="e57762", keywords="metaverse", keywords="virtual reality", keywords="cancer education", keywords="cancer detection", keywords="digital health", abstract="Background: Early detection of cancer and provision of appropriate treatment can increase the cancer cure rate and reduce cancer-related deaths. Early detection requires improving the cancer screening quality of each medical institution and enhancing the capabilities of health professionals through tailored education in each field. However, during the COVID-19 pandemic, regional disparities in educational infrastructure emerged, and educational accessibility was restricted. The demand for remote cancer education services to address these issues has increased, and in this study, we considered medical metaverses as a potential means of meeting these needs. In 2022, we used Metaverse Educational Center, developed for the virtual training of health professionals, to train radiologic technologists remotely in mammography positioning. Objective: This study aims to investigate the user experience of the Metaverse Educational Center subplatform and the factors associated with the intention for continuous use by focusing on cases of using the subplatform in a remote mammography positioning training project. Methods: We conducted a multicenter, cross-sectional survey between July and December 2022. We performed a descriptive analysis to examine the Metaverse Educational Center user experience and a logistic regression analysis to clarify factors closely related to the intention to use the subplatform continuously. In addition, a supplementary open-ended question was used to obtain feedback from users to improve Metaverse Educational Center. Results: Responses from 192 Korean participants (male participants: n=16, 8.3\%; female participants: n=176, 91.7\%) were analyzed. Most participants were satisfied with Metaverse Educational Center (178/192, 92.7\%) and wanted to continue using the subplatform in the future (157/192, 81.8\%). Less than half of the participants (85/192, 44.3\%) had no difficulty in wearing the device. Logistic regression analysis results showed that intention for continuous use was associated with satisfaction (adjusted odds ratio 3.542, 95\% CI 1.037-12.097; P=.04), immersion (adjusted odds ratio 2.803, 95\% CI 1.201-6.539; P=.02), and no difficulty in wearing the device (adjusted odds ratio 2.020, 95\% CI 1.004-4.062; P=.049). However, intention for continuous use was not associated with interest (adjusted odds ratio 0.736, 95\% CI 0.303-1.789; P=.50) or perceived ease of use (adjusted odds ratio 1.284, 95\% CI 0.614-2.685; P=.51). According to the qualitative feedback, Metaverse Educational Center was useful in cancer education, but the experience of wearing the device and the types and qualities of the content still need to be improved. Conclusions: Our results demonstrate the positive user experience of Metaverse Educational Center by focusing on cases of using the subplatform in a remote mammography positioning training project. Our results also suggest that improving users' satisfaction and immersion and ensuring the lack of difficulty in wearing the device may enhance their intention for continuous use of the subplatform. ", doi="10.2196/57762", url="https://www.jmir.org/2024/1/e57762" } @Article{info:doi/10.2196/49703, author="Baik, H. Sharon and Clark, Karen and Sanchez, Marisol and Loscalzo, Matthew and Celis, Ashley and Razavi, Marianne and Yang, Dershung and Dale, William and Haas, Niina", title="Usability and Preliminary Efficacy of an Adaptive Supportive Care System for Patients With Cancer: Pilot Randomized Controlled Trial", journal="JMIR Cancer", year="2024", month="Jul", day="10", volume="10", pages="e49703", keywords="cancer", keywords="distress screening", keywords="eHealth", keywords="supportive care", keywords="mobile phone", abstract="Background: Using an iterative user-centered design process, our team developed a patient-centered adaptive supportive care system, PatientCareAnywhere, that provides comprehensive biopsychosocial screening and supportive cancer care to patients across the continuum of care adaptively. The overarching goal of PatientCareAnywhere is to improve health-related quality of life (HRQOL) and self-efficacy of patients with cancer by empowering them with self-management skills and bringing cancer care support directly to them at home. Such support is adaptive to the patient's needs and health status and coordinated across multiple sources in the forms of referrals, education, engagement of community resources, and secure social communication. Objective: This study aims to assess the usability of the new web-based PatientCareAnywhere system and examine the preliminary efficacy of PatientCareAnywhere to improve patient-reported outcomes compared with usual care. Methods: For phase 1, usability testing participants included patients with cancer (n=4) and caregivers (n=7) who evaluated the software prototype and provided qualitative (eg, interviews) and quantitative (eg, System Usability Scale) feedback. For phase 2, participants in the 3-month pilot randomized controlled trial were randomized to receive the PatientCareAnywhere intervention (n=36) or usual care control condition (n=36). HRQOL and cancer-relevant self-efficacy were assessed at baseline (preintervention assessment) and 12 weeks from baseline (postintervention assessment); mean differences between pre- and postintervention scores were compared between the 2 groups. Results: Participants were highly satisfied with the prototype and reported above-average acceptable usability, with a mean System Usability Scale score of 84.09 (SD 10.02). Qualitative data supported the overall usability and perceived usefulness of the intervention, with a few design features (eg, ``help request'' function) added based on participant feedback. With regard to the randomized controlled trial, patients in the intervention group reported significant improvements in HRQOL from pre- to postintervention scores (mean difference 6.08, SD 15.26) compared with the control group (mean difference ?2.95, SD 10.63; P=.01). In contrast, there was no significant between-group difference in self-efficacy (P=.09). Conclusions: Overall, PatientCareAnywhere represents a user-friendly, functional, and acceptable supportive care intervention with preliminary efficacy to improve HRQOL among patients diagnosed with cancer. Future studies are needed to further establish the efficacy of PatientCareAnywhere as well as explore strategies to enhance user engagement and investigate the optimal intensity, frequency, and use of the intervention to improve patient outcomes. Trial Registration: ClinicalTrials.gov NCT02408406; https://clinicaltrials.gov/study/NCT02408406 ", doi="10.2196/49703", url="https://cancer.jmir.org/2024/1/e49703" } @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/10.2196/46303, author="Andree, Rosa and Mujcic, Ajla and den Hollander, Wouter and van Laar, Margriet and Boon, Brigitte and Engels, Rutger and Blankers, Matthijs", title="Digital Smoking Cessation Intervention for Cancer Survivors: Analysis of Predictors and Moderators of Engagement and Outcome Alongside a Randomized Controlled Trial", journal="JMIR Cancer", year="2024", month="Jun", day="20", volume="10", pages="e46303", keywords="smoking cessation", keywords="cancer survivors", keywords="engagement", keywords="digital intervention", keywords="eHealth", keywords="smoking", keywords="intervention", keywords="randomized controlled trial", keywords="predictor", keywords="RCT", keywords="smoker", keywords="addict", keywords="cessation", keywords="quit", keywords="cancer", keywords="oncology", abstract="Background: Recent studies have shown positive, though small, clinical effects of digital smoking cessation (SC) interventions for cancer survivors. However, research on associations among participant characteristics, intervention engagement, and outcomes is limited. Objective: This study aimed to explore the predictors and moderators of engagement and outcome of MyCourse-Quit Smoking (in Dutch: ``MijnKoers-Stoppen met Roken''), a digital minimally guided intervention for cancer survivors. Methods: A secondary analysis of data from the randomized controlled trial was performed. The number of cigarettes smoked in the past 7 days at 6-month follow-up was the primary outcome measure. We analyzed interactions among participant characteristics (11 variables), intervention engagement (3 variables), and outcome using robust linear (mixed) modeling. Results: In total, 165 participants were included in this study. Female participants accessed the intervention less often than male participants (B=--11.12; P=.004). A higher Alcohol Use Disorders Identification Test score at baseline was associated with a significantly higher number of logins (B=1.10; P<.001) and diary registrations (B=1.29; P<.001). A higher Fagerstr{\"o}m Test for Nicotine Dependence score at baseline in the intervention group was associated with a significantly larger reduction in tobacco use after 6 months (B=--9.86; P=.002). No other associations and no moderating effects were found. Conclusions: Overall, a limited number of associations was found between participant characteristics, engagement, and outcome, except for gender, problematic alcohol use, and nicotine dependence. Future studies are needed to shed light on how this knowledge can be used to improve the effects of digital SC programs for cancer survivors. Trial Registration: Netherlands Trial register NTR6011/NL5434; https://onderzoekmetmensen.nl/nl/trial/22832 ", doi="10.2196/46303", url="https://cancer.jmir.org/2024/1/e46303" } @Article{info:doi/10.2196/49383, author="Zhang, Lianshan and Jiang, Shaohai", title="Examining the Role of Information Behavior in Linking Cancer Risk Perception and Cancer Worry to Cancer Fatalism in China: Cross-Sectional Survey Study", journal="J Med Internet Res", year="2024", month="May", day="31", volume="26", pages="e49383", keywords="cancer fatalism", keywords="cancer risk perception", keywords="cancer worry", keywords="health information seeking", keywords="information avoidance", abstract="Background: Reducing cancer fatalism is essential because of its detrimental impact on cancer-related preventive behaviors. However, little is known about factors influencing individuals' cancer fatalism in China. Objective: With a general basis of the extended parallel process model, this study aims to examine how distinct cancer-related mental conditions (risk perception and worry) and different information behaviors (information seeking vs avoidance) become associated with cancer fatalism, with an additional assessment of the moderating effect of information usefulness. Methods: Data were drawn from the Health Information National Trends Survey in China, which was conducted in 2017 (N=2358). Structural equation modeling and bootstrapping methods were performed to test a moderated mediation model and hypothesized relationships. Results: The results showed that cancer risk perception and cancer worry were positively associated with online health information seeking. In addition, cancer worry was positively related to cancer information avoidance. Moreover, online health information seeking was found to reduce cancer fatalism, while cancer information avoidance was positively associated with cancer fatalism. The results also indicated that the perceived usefulness of cancer information moderated this dual-mediation pathway. Conclusions: The national survey data indicate that cancer mental conditions should not be treated as homogeneous entities, given their varying functions and effects. Apart from disseminating useful cancer information to encourage individuals to adaptively cope with cancer threats, we advocate for health communication programs to reduce cancer information avoidance to alleviate fatalistic beliefs about cancer prevention. ", doi="10.2196/49383", url="https://www.jmir.org/2024/1/e49383", url="http://www.ncbi.nlm.nih.gov/pubmed/38819919" } @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/10.2196/56168, author="Abraham, Olufunmilola and McCarthy, J. Tyler", title="An Introduction to the OutSMART Cancer Serious Game: Current and Future Directions", journal="JMIR Cancer", year="2024", month="May", day="29", volume="10", pages="e56168", keywords="serious game", keywords="cancer", keywords="health education", keywords="adolescents", keywords="health behavior", keywords="United States", keywords="young people", keywords="adolescent", keywords="teenager", keywords="teenagers", keywords="cancer prevention", keywords="education", keywords="cancer risk", keywords="tool", keywords="OutSMART Cancer", keywords="innovative", keywords="game development", keywords="cancer awareness", keywords="prevention", keywords="wellness", doi="10.2196/56168", url="https://cancer.jmir.org/2024/1/e56168", url="http://www.ncbi.nlm.nih.gov/pubmed/38809587" } @Article{info:doi/10.2196/53872, author="Yu, Lin and Gong, Jianmei and Sun, Xiaoting and Zang, Min and Liu, Lei and Yu, Shengmiao", title="Assessing the Content and Effect of Web-Based Decision Aids for Postmastectomy Breast Reconstruction: Systematic Review and Meta-Analysis of Randomized Controlled Trials", journal="J Med Internet Res", year="2024", month="May", day="27", volume="26", pages="e53872", keywords="decision aids", keywords="internet", keywords="postmastectomy breast reconstruction", keywords="decision conflicts", keywords="mobile phone", abstract="Background: Web-based decision aids have been shown to have a positive effect when used to improve the quality of decision-making for women facing postmastectomy breast reconstruction (PMBR). However, the existing findings regarding these interventions are still incongruent, and the overall effect is unclear. Objective: We aimed to assess the content of web-based decision aids and its impact on decision-related outcomes (ie, decision conflict, decision regret, informed choice, and knowledge), psychological-related outcomes (ie, satisfaction and anxiety), and surgical decision-making in women facing PMBR. Methods: This systematic review and meta-analysis followed the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. A total of 6 databases, PubMed, Embase, Cochrane Library, CINAHL, PsycINFO, and Web of Science Core Collection, were searched starting at the time of establishment of the databases to May 2023, and an updated search was conducted on April 1, 2024. MeSH (Medical Subject Headings) terms and text words were used. The Cochrane Risk of Bias Tool for randomized controlled trials was used to assess the risk of bias. The certainty of evidence was assessed using the Grading of Recommendations, Assessment, Development, and Evaluation approach. Results: In total, 7 studies included 579 women and were published between 2008 and 2023, and the sample size in each study ranged from 26 to 222. The results showed that web-based decision aids used audio and video to present the pros and cons of PMBR versus no PMBR, implants versus flaps, and immediate versus delayed PMBR and the appearance and feel of the PMBR results and the expected recovery time with photographs of actual patients. Web-based decision aids help improve PMBR knowledge, decisional conflict (mean difference [MD]=--5.43, 95\% CI --8.87 to --1.99; P=.002), and satisfaction (standardized MD=0.48, 95\% CI 0.00 to 0.95; P=.05) but have no effect on informed choice (MD=--2.80, 95\% CI --8.54 to 2.94; P=.34), decision regret (MD=--1.55, 95\% CI --6.00 to 2.90 P=.49), or anxiety (standardized MD=0.04, 95\% CI --0.50 to 0.58; P=.88). The overall Grading of Recommendations, Assessment, Development, and Evaluation quality of the evidence was low. Conclusions: The findings suggest that the web-based decision aids provide a modern, low-cost, and high dissemination rate effective method to promote the improved quality of decision-making in women undergoing PMBR. Trial Registration: PROSPERO CRD42023450496; https://www.crd.york.ac.uk/prospero/display\_record.php?RecordID=450496 ", doi="10.2196/53872", url="https://www.jmir.org/2024/1/e53872", url="http://www.ncbi.nlm.nih.gov/pubmed/38801766" } @Article{info:doi/10.2196/52274, author="Aumaitre, Albane and Gagnayre, R{\'e}mi and Foucaut, Aude-Marie", title="Determinants and Factors of Physical Activity After Oncology Treatments (DEFACTO) in Metropolitan France: Protocol of a Mixed Methods Study and Intervention", journal="JMIR Res Protoc", year="2024", month="May", day="16", volume="13", pages="e52274", keywords="socioecological model", keywords="mixed methods", keywords="cancer survivorship", keywords="physical activity", keywords="sedentary behavior", keywords="individualized health education program", keywords="feasibility", abstract="Background: While the scientific community widely recognizes the benefits of physical activity (PA) in oncology supportive care, cancer survivors who have undergone chemo- or radio-immunotherapy treatments struggle to meet PA recommendations. This underscores the importance of identifying factors influencing active lifestyle adoption and maintenance and proposing a multilevel model (micro-, meso-, and macrolevel) to better understand facilitators and barriers. Currently, no socioecological model explains an active lifestyle in the posttreatment phase of breast, colorectal, prostate, and lung cancers. Objective: The objective is to identify factors influencing an active lifestyle in cancer survivorship and assess the feasibility of an individualized program targeting an active lifestyle. The objectives will be addressed in 3 stages. Stage 1 aims to elucidate factors associated with the active lifestyle of cancer survivors. Stage 2 involves developing an explanatory model based on previously identified factors to create a tailored health education program for an active lifestyle after oncology treatments. Stage 3 aims to evaluate the feasibility and potential effects of this personalized health education program after its national implementation. Methods: First, the exploration of factors influencing PA (stage 1) will be based on a mixed methods approach, using an explanatory sequential design and multilevel analysis. The quantitative phase involves completing a questionnaire from a socioecological perspective. Subsequently, a subset of respondents will engage in semistructured interviews to aid in interpreting the quantitative results. This phase aims to construct a model of the factors influencing an active lifestyle and develop an individualized 12-week program based on our earlier findings (stage 2). In stage 3, we will implement our multicenter, multimodal program for 150 physically inactive and sedentary cancer survivors across metropolitan France. Program feasibility will be evaluated. Measured PA level by connected device and multidimensional variables such as declared PA and sedentary behaviors, PA readiness, motivation, PA preferences, PA knowledge and skills, and barriers and facilitators will be assessed before and during the program and 52 weeks afterward. Results: The institutional review board approved the mixed methods study (phase 1) in April 2020, and the intervention (phase 3) was approved in March 2022. Recruitment and data collection commenced in April 2022, with intervention implementation concluded in May 2023. Data collection and full analysis are expected to be finalized by July 2024. Conclusions: The Determinants and Factors of Physical Activity After Oncology Treatments (DEFACTO) study seeks to enhance our understanding, within our socioecological model, of factors influencing an active lifestyle among cancer survivors and to assess whether a tailored intervention based on this model can support an active lifestyle. Trial Registration: ClinicalTrials.gov NCT05354882; https://www.clinicaltrials.gov/study/NCT05354882 International Registered Report Identifier (IRRID): DERR1-10.2196/52274 ", doi="10.2196/52274", url="https://www.researchprotocols.org/2024/1/e52274", url="http://www.ncbi.nlm.nih.gov/pubmed/38753415" } @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/10.2196/50118, author="Laidsaar-Powell, Rebekah and Giunta, Sarah and Butow, Phyllis and Keast, Rachael and Koczwara, Bogda and Kay, Judy and Jefford, Michael and Turner, Sandra and Saunders, Christobel and Schofield, Penelope and Boyle, Frances and Yates, Patsy and White, Kate and Miller, Annie and Butt, Zoe and Bonnaudet, Melanie and Juraskova, Ilona", title="Development of Web-Based Education Modules to Improve Carer Engagement in Cancer Care: Design and User Experience Evaluation of the e-Triadic Oncology (eTRIO) Modules for Clinicians, Patients, and Carers", journal="JMIR Med Educ", year="2024", month="Apr", day="17", volume="10", pages="e50118", keywords="family carers", keywords="patient education", keywords="health professional education", keywords="web-based intervention", keywords="mobile phone", abstract="Background: Carers often assume key roles in cancer care. However, many carers report feeling disempowered and ill?equipped to support patients. Our group published evidence-based guidelines (the Triadic Oncology [TRIO] Guidelines) to improve oncology clinician engagement with carers and the management of challenging situations involving carers. Objective: To facilitate implementation of the TRIO Guidelines in clinical practice, we aimed to develop, iteratively refine, and conduct user testing of a suite of evidence-based and interactive web-based education modules for oncology clinicians (e-Triadic Oncology [eTRIO]), patients with cancer, and carers (eTRIO for Patients and Carers [eTRIO?pc]). These were designed to improve carer involvement, communication, and shared decision-making in the cancer management setting. Methods: The eTRIO education modules were based on extensive research, including systematic reviews, qualitative interviews, and consultation analyses. Guided by the person-based approach, module content and design were reviewed by an expert advisory group comprising academic and clinical experts (n=13) and consumers (n=5); content and design were continuously and iteratively refined. User experience testing (including ``think-aloud'' interviews and administration of the System Usability Scale [SUS]) of the modules was completed by additional clinicians (n=5), patients (n=3), and carers (n=3). Results: The final clinician module comprises 14 sections, requires approximately 1.5 to 2 hours to complete, and covers topics such as carer-inclusive communication and practices; supporting carer needs; and managing carer dominance, anger, and conflicting patient-carer wishes. The usability of the module was rated by 5 clinicians, with a mean SUS score of 75 (SD 5.3), which is interpreted as good. Clinicians often desired information in a concise format, divided into small ``snackable'' sections that could be easily recommenced if they were interrupted. The carer module features 11 sections; requires approximately 1.5 hours to complete; and includes topics such as the importance of carers, carer roles during consultations, and advocating for the patient. The patient module is an adaptation of the relevant carer module sections, comprising 7 sections and requiring 1 hour to complete. The average SUS score as rated by 6 patients and carers was 78 (SD 16.2), which is interpreted as good. Interactive activities, clinical vignette videos, and reflective learning exercises are incorporated into all modules. Patient and carer consumer advisers advocated for empathetic content and tone throughout their modules, with an easy-to-read and navigable module interface. Conclusions: The eTRIO suite of modules were rigorously developed using a person-based design methodology to meet the unique information needs and learning requirements of clinicians, patients, and carers, with the goal of improving effective and supportive carer involvement in cancer consultations and cancer care. ", doi="10.2196/50118", url="https://mededu.jmir.org/2024/1/e50118", url="http://www.ncbi.nlm.nih.gov/pubmed/38630531" } @Article{info:doi/10.2196/46979, author="Dang, Ha Thu and Wickramasinghe, Nilmini and Forkan, Mohammad Abdur Rahim and Jayaraman, Prakash Prem and Burbury, Kate and O'Callaghan, Clare and Whitechurch, Ashley and Schofield, Penelope", title="Co-Design, Development, and Evaluation of a Mobile Solution to Improve Medication Adherence in Cancer: Design Science Research Approach", journal="JMIR Cancer", year="2024", month="Apr", day="3", volume="10", pages="e46979", keywords="cancer", keywords="behavioral science", keywords="design science research", keywords="digital", keywords="medication adherence", keywords="mobile solution", keywords="Safety and Adherence to Medication and Self-Care Advice in Oncology", keywords="SAMSON", keywords="mobile phone", abstract="Background: Medication nonadherence negatively impacts the health outcomes of people with cancer as well as health care costs. Digital technologies present opportunities to address this health issue. However, there is limited evidence on how to develop digital interventions that meet the needs of people with cancer, are perceived as useful, and are potentially effective in improving medication adherence. Objective: The objective of this study was to co-design, develop, and preliminarily evaluate an innovative mobile health solution called Safety and Adherence to Medication and Self-Care Advice in Oncology (SAMSON) to improve medication adherence among people with cancer. Methods: Using the 4 cycles and 6 processes of design science research methodology, we co-designed and developed a medication adherence solution for people with cancer. First, we conducted a literature review on medication adherence in cancer and a systematic review of current interventions to address this issue. Behavioral science research was used to conceptualize the design features of SAMSON. Second, we conducted 2 design phases: prototype design and final feature design. Last, we conducted a mixed methods study on patients with hematological cancer over 6 weeks to evaluate the mobile solution. Results: The developed mobile solution, consisting of a mobile app, a web portal, and a cloud-based database, includes 5 modules: medication reminder and acknowledgment, symptom assessment and management, reinforcement, patient profile, and reporting. The quantitative study (n=30) showed that SAMSON was easy to use (21/27, 78\%). The app was engaging (18/27, 67\%), informative, increased user interactions, and well organized (19/27, 70\%). Most of the participants (21/27, 78\%) commented that SAMSON's activities could help to improve their adherence to cancer treatments, and more than half of them (17/27, 63\%) would recommend the app to their peers. The qualitative study (n=25) revealed that SAMSON was perceived as helpful in terms of reminding, supporting, and informing patients. Possible barriers to using SAMSON include the app glitches and users' technical inexperience. Further needs to refine the solution were also identified. Technical improvements and design enhancements will be incorporated into the subsequent iteration. Conclusions: This study demonstrates the successful application of behavioral science research and design science research methodology to design and develop a mobile solution for patients with cancer to be more adherent. The study also highlights the importance of applying rigorous methodologies in developing effective and patient-centered digital intervention solutions. ", doi="10.2196/46979", url="https://cancer.jmir.org/2024/1/e46979", url="http://www.ncbi.nlm.nih.gov/pubmed/38569178" } @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/10.2196/53956, author="Abraham, Olufunmilola and Agoke, Adeola and Sanuth, Kazeem and Fapohunda, Abimbola and Ogunsanya, Motolani and Piper, Megan and Trentham-Dietz, Amy", title="Need for Culturally Competent and Responsive Cancer Education for African Immigrant Families and Youth Living in the United States", journal="JMIR Cancer", year="2024", month="Mar", day="6", volume="10", pages="e53956", keywords="African immigrant", keywords="youth", keywords="adolescent", keywords="adolescents", keywords="teen", keywords="teens", keywords="teenager", keywords="teenagers", keywords="cancer awareness", keywords="health disparities", keywords="culturally competent education", keywords="African", keywords="Black", keywords="immigrant", keywords="cultural", keywords="culturally", keywords="cancer", keywords="oncology", keywords="patient education", keywords="awareness", keywords="prevention", keywords="disparity", keywords="disparities", doi="10.2196/53956", url="https://cancer.jmir.org/2024/1/e53956", url="http://www.ncbi.nlm.nih.gov/pubmed/38447129" } @Article{info:doi/10.2196/40053, author="Mylle, Sofie and Papeleu, Jorien and Hoorens, Isabelle and Verhaeghe, Evelien and Brochez, Lieve", title="The Value of Teledermatology Advice for Skin Toxicity in Oncology: Experience From a Pilot Study", journal="JMIR Dermatol", year="2024", month="Feb", day="29", volume="7", pages="e40053", keywords="e-health", keywords="teledermatology", keywords="oncology", keywords="epidermal growth factor receptor", keywords="EGFR-inhibitors", keywords="skin toxicity", keywords="cancer", keywords="dermatology", keywords="therapy", keywords="pilot study", doi="10.2196/40053", url="https://derma.jmir.org/2024/1/e40053", url="http://www.ncbi.nlm.nih.gov/pubmed/38422495" } @Article{info:doi/10.2196/50528, author="Ni, Chenxu and Wang, Yi-fu and Zhang, Yun-ting and Yuan, Min and Xu, Qing and Shen, Fu-ming and Li, Dong-Jie and Huang, Fang", title="A Mobile Applet for Assessing Medication Adherence and Managing Adverse Drug Reactions Among Patients With Cancer: Usability and Utility Study", journal="JMIR Form Res", year="2024", month="Feb", day="29", volume="8", pages="e50528", keywords="WeChat applet", keywords="usability testing", keywords="utility testing", keywords="cancer patients", keywords="patients", keywords="cancer", keywords="qualitative study", abstract="Background: Medication adherence and the management of adverse drug reactions (ADRs) are crucial to the efficacy of antitumor drugs. A WeChat applet, also known as a ``Mini Program,'' is similar to the app but has marked advantages. The development and use of a WeChat applet makes follow-up convenient for patients with cancer. Objective: This study aimed to assess the usability and utility of a newly developed WeChat applet, ``DolphinCare,'' among patients with cancer in Shanghai. Methods: A qualitative methodology was used to obtain an in-depth understanding of the experiences of patients with cancer when using DolphinCare from the usability and utility aspects. The development phase consisted of 2 parts: alpha and beta testing. Alpha testing combined the theory of the Fogg Behavior Model and the usability model. Alpha testing also involved testing the design of DolphinCare using a conceptual framework, which included factors that could affect medication adherence and ADRs. Beta testing was conducted using in-depth interviews. In-depth interviews allowed us to assist the patients in using DolphinCare and understand whether they liked or disliked DolphinCare and found it useful. Results: We included participants who had an eHealth Literacy Scale (eHEALS) score of ?50\%, and a total of 20 participants were interviewed consecutively. The key positive motivators described by interviewers were to be reminded to take their medications and to alleviate their ADRs. The majority of the patients were able to activate and use DolphinCare by themselves. Most patients indicated that their trigger to follow-up DolphinCare was the recommendation of their known and trusted health care professionals. All participants found that labels containing the generic names of their medication and the medication reminders were useful, including timed pop-up push notifications and text alerts. The applet presented the corresponding information collection forms of ADRs to the patient to fill out. The web-based consultation system enables patients to consult pharmacists or physicians in time when they have doubts about medications or have ADRs. The applet had usabilities and utilities that could improve medication adherence and the management of ADRs among patients with cancer. Conclusions: This study provides preliminary evidence regarding the usability and utility of this type of WeChat applet among patients with cancer, which is expected to be promoted for managing follow-up among other patients with other chronic disease. ", doi="10.2196/50528", url="https://formative.jmir.org/2024/1/e50528", url="http://www.ncbi.nlm.nih.gov/pubmed/38421700" } @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/10.2196/48428, author="Alhuwail, Dari and Alhouti, Aisha and Alsarhan, Latifah", title="Assessing the Quality, Privacy, and Security of Breast Cancer Apps for Arabic Speakers: Systematic Search and Review of Smartphone Apps", journal="JMIR Cancer", year="2024", month="Jan", day="16", volume="10", pages="e48428", keywords="apps", keywords="Arabic", keywords="awareness", keywords="breast cancer", keywords="consumer health informatics", keywords="education", keywords="mHealth", keywords="mobile health", keywords="privacy", keywords="quality", keywords="security", keywords="smartphone", keywords="women", abstract="Background: Breast cancer is a widespread disease, and its incidence is rapidly increasing in the Middle East and North Africa region. With the increasing availability of smartphone apps for various health purposes, breast cancer apps have emerged as tools for raising awareness, providing support, and empowering women affected by this disease. These apps offer many features, including information on breast cancer risk factors, self-examination guides, appointment reminders, and community support groups or hotlines. Using apps raises the risk of privacy and security issues, and we hope that examining these features of the apps will contribute to the understanding of how technology can be used to improve these apps and provide insights for future development and improvement of breast cancer apps. Objective: This study aims to critically review the quality, privacy, and security of breast cancer apps available to Arabic speakers. Methods: Similar to several recent studies, we used a systematic search for apps available in Google Play and Apple App stores using both the web interface and the built-in native stores installed on smartphones. The search was conducted in mid-December 2022 in Arabic using the following keywords: ????? ????? -- ??? ????? ????? -- ???? ????? ????? -- ??? ????? ????? -- ????? ????? ????? -- ??? ????? (breast cancer, breast cancer treatment, breast cancer disease, breast cancer symptoms, breast cancer screening, and breast test). These preidentified search terms are based on earlier work concerning the top searched breast cancer topics by Arabic speakers through Google's search engine. We excluded apps that did not have an Arabic interface, were developed for non-Arabic speakers, were paid, needed a subscription, or were directed toward health care workers. The Mobile App Rating Scale was used to evaluate the quality of the apps concerning their engagement, functionality, aesthetics, and information. A risk score was calculated for the apps to determine their security risk factors. Results: Only 9 apps were included, with most (6/9, 67\%) being supported by advertisements and categorized as informational. Overall, the apps had low numbers of downloads (>10 to >1000). The majority of the included apps (8/9, 89\%) requested dangerous access permissions, including access to storage, media files, and the camera. The average security score of the included apps was 3.22, while only 2 apps provided information about data security and privacy. The included apps achieved an overall average quality score of 3.27, with individual dimension scores of 4.75 for functionality, 3.04 for information, 3.00 for aesthetics, and 2.32 for engagement. Conclusions: The limited availability of breast cancer apps available to Arabic speakers should be a call to action and prompt health care organizations and developers to join forces and collaboratively develop information-rich, usable, functional, engaging, and secure apps. ", doi="10.2196/48428", url="https://cancer.jmir.org/2024/1/e48428", url="http://www.ncbi.nlm.nih.gov/pubmed/38227353" } @Article{info:doi/10.2196/49934, author="Tam, M. Rowena and Zablocki, W. Rong and Liu, Chenyu and Narayan, K. Hari and Natarajan, Loki and LaCroix, Z. Andrea and Dillon, Lindsay and Sakoulas, Eleanna and Hartman, J. Sheri", title="Feasibility of a Health Coach Intervention to Reduce Sitting Time and Improve Physical Functioning Among Breast Cancer Survivors: Pilot Intervention Study", journal="JMIR Cancer", year="2023", month="Dec", day="19", volume="9", pages="e49934", keywords="physical function", keywords="sedentary behavior", keywords="quality of life", keywords="activPAL", keywords="health coaching", keywords="cancer survivors", keywords="physical functions", keywords="breast cancer", keywords="survivors", keywords="sitting time", keywords="physical activity", keywords="walking", keywords="exercise", keywords="fatigue", keywords="sitting", abstract="Background: Sedentary behavior among breast cancer survivors is associated with increased risk of poor physical function and worse quality of life. While moderate to vigorous physical activity can improve outcomes for cancer survivors, many are unable to engage in that intensity of physical activity. Decreasing sitting time may be a more feasible behavioral target to potentially mitigate the impact of cancer and its treatments. Objective: The purpose of this study was to investigate the feasibility and preliminary impact of an intervention to reduce sitting time on changes to physical function and quality of life in breast cancer survivors, from baseline to a 3-month follow-up. Methods: Female breast cancer survivors with self-reported difficulties with physical function received one-on-one, in-person personalized health coaching sessions aimed at reducing sitting time. At baseline and follow-up, participants wore the activPAL (thigh-worn accelerometer; PAL Technologies) for 3 months and completed physical function tests (4-Meter Walk Test, Timed Up and Go, and 30-Second Chair Stand) and Patient-Reported Outcomes Measurement Information System (PROMIS) self-reported outcomes. Changes in physical function and sedentary behavior outcomes were assessed by linear mixed models. Results: On average, participants (n=20) were aged 64.5 (SD 9.4) years; had a BMI of 30.4 (SD 4.5) kg/m2; and identified as Black or African American (n=3, 15\%), Hispanic or Latina (n=4, 20\%), and non-Hispanic White (n=14, 55\%). Average time since diagnosis was 5.8 (SD 2.2) years with participants receiving chemotherapy (n=8, 40\%), radiotherapy (n=18, 90\%), or endocrine therapy (n=17, 85\%). The intervention led to significant reductions in sitting time: activPAL average daily sitting time decreased from 645.7 (SD 72.4) to 532.7 (SD 142.1; $\beta$=--112.9; P=.001) minutes and average daily long sitting bouts (bout length ?20 min) decreased from 468.3 (SD 94.9) to 366.9 (SD 150.4; $\beta$=--101.4; P=.002) minutes. All physical function tests had significant improvements: on average, 4-Meter Walk Test performance decreased from 4.23 (SD 0.95) to 3.61 (SD 2.53; $\beta$=--.63; P=.002) seconds, Timed Up and Go performance decreased from 10.30 (SD 3.32) to 8.84 (SD 1.58; $\beta$=--1.46; P=.003) seconds, and 30-Second Chair Stand performance increased from 9.75 (SD 2.81) to 13.20 completions (SD 2.53; $\beta$=3.45; P<.001). PROMIS self-reported physical function score improved from 44.59 (SD 4.40) to 47.12 (SD 5.68; $\beta$=2.53; P=.05) and average fatigue decreased from 52.51 (SD 10.38) to 47.73 (SD 8.43; $\beta$=--4.78; P=.02). Conclusions: This 3-month pilot study suggests that decreasing time spent sitting may be helpful for breast cancer survivors experiencing difficulties with physical function and fatigue. Reducing sitting time is a novel and potentially more feasible approach to improving health and quality of life in cancer survivors. ", doi="10.2196/49934", url="https://cancer.jmir.org/2023/1/e49934", url="http://www.ncbi.nlm.nih.gov/pubmed/38113082" } @Article{info:doi/10.2196/45101, author="Morena, Nina and Ahisar, Yitzchok and Wang, Xena and Nguyen, Diana and Rentschler, A. Carrie and Meguerditchian, N. Ari", title="Content Quality of YouTube Videos About Metastatic Breast Cancer in Young Women: Systematic Assessment", journal="JMIR Cancer", year="2023", month="Nov", day="14", volume="9", pages="e45101", keywords="social media", keywords="YouTube", keywords="metastatic breast cancer", keywords="breast cancer", keywords="patient education", keywords="health education", keywords="patient literacy", keywords="media literacy", keywords="health literacy", keywords="consumer health information", keywords="assessment tool", keywords="treatment", keywords="false information", keywords="women", keywords="videos", keywords="web-based", abstract="Background: Young women with metastatic breast cancer (MBC) are part of a digitally connected generation yet are underserved in terms of information needs. YouTube is widely used to find and identify health information. The accessibility of health-related content on social media together with the rare and marginalized experiences of young women with MBC and the digital media practices of younger generations imply a considerable likelihood that young women with MBC will seek information and community on the internet. Objective: This study aims to assess the content quality of MBC YouTube videos and to identify themes in the experiences of young women with MBC based on YouTube videos. Methods: A systematic assessment of MBC YouTube videos using the search term ``metastatic breast cancer young'' was conducted in August 2021. The search was performed in an incognito browser and with no associated YouTube or Google account. Search results were placed in order from most to least views. Title, date uploaded, length, poster identity, number of likes, and number of comments were collected. Understandability and actionability were assessed using the Patient Education Materials Assessment Tool (PEMAT); information reliability and quality were assessed with DISCERN. Themes, sponsorships, and health care professionals' and patients' narratives were reported. Results: A total of 101 videos were identified. Of these, 78.2\% (n=79) included sponsorships. The mean PEMAT scores were 78.8\% (SD 15.3\%) and 43.1\% (SD 45.2\%) for understandability and actionability, respectively. The mean DISCERN score was 2.44 (SD 0.7) out of 5. Identified themes included treatment (n=67, 66.3\%), family relationship (n=46, 45.5\%), and motherhood (n=38, 37.6\%). Conclusions: YouTube videos about young women with MBC are highly understandable but demonstrate moderate rates of actionability, with low reliability and quality scores. Many have a commercial bias. While web-based materials have limitations, their potential to provide patient support is not fully developed. By acknowledging their patients' media habits, health care professionals can further develop a trusting bond with their patients, provide a space for open and honest discussions of web-based materials, and avoid any potential instances of confusion caused by misleading, inaccurate, or false web-based materials. ", doi="10.2196/45101", url="https://cancer.jmir.org/2023/1/e45101", url="http://www.ncbi.nlm.nih.gov/pubmed/37737837" } @Article{info:doi/10.2196/46189, author="Sprave, Tanja and Pfaffenlehner, Michelle and Stoian, Raluca and Christofi, Eleni and R{\"u}hle, Alexander and Z{\"o}ller, Daniela and Fabian, Alexander and Fahrner, Harald and Binder, Harald and Sch{\"a}fer, Henning and Gkika, Eleni and Grosu, Anca-Ligia and Heinemann, Felix and Nicolay, Henrik Nils", title="App-Controlled Treatment Monitoring and Support for Patients With Head and Neck Cancer Undergoing Radiotherapy: Results From a Prospective Randomized Controlled Trial", journal="J Med Internet Res", year="2023", month="Oct", day="19", volume="25", pages="e46189", keywords="mHealth", keywords="head and neck cancer", keywords="head and neck squamous cell carcinoma", keywords="HNSCC", keywords="radiotherapy", keywords="mobile app", keywords="quality of life", keywords="patient-reported outcome measure", keywords="PROM", keywords="mobile health", keywords="head", keywords="neck", keywords="cancer", keywords="oncology", keywords="radiation", keywords="randomized controlled trial", keywords="RCT", keywords="satisfaction", keywords="treatment surveillance", keywords="patient surveillance", keywords="feasibility", keywords="patient reported", keywords="outcome measure", keywords="app-based", abstract="Background: Head and neck cancers (HNCs) are very common malignancies, and treatment often requires multimodal approaches, including radiotherapy and chemotherapy. Patients with HNC often display a high symptom burden, both due to the disease itself and the adverse effects of the multimodal therapy. Close telemonitoring of symptoms and quality of life during the course of treatment may help to identify those patients requiring early medical support. Objective: The App-Controlled Treatment Monitoring and Support for Patients With Head and Neck Cancer (APCOT) trial aimed to investigate the feasibility of integrating electronic patient-reported outcomes (ePROs) in the treatment surveillance pathway of patients with HNC during the course of their radiotherapy. Additionally, the influence of app-based ePRO monitoring on global and disease-specific quality of life and patient satisfaction with treatment was assessed. Methods: Patients undergoing radiotherapy for histologically proven HNCs at the Department of Radiation Oncology, University Medical Center Freiburg, Germany, were enrolled in this trial and monitored by weekly physician appointments. Patients were randomized between additional ePRO monitoring on each treatment day or standard-of-care monitoring. Feasibility of ePRO monitoring was defined as ?80\% of enrolled patients answering ?80\% of their daily app-based questions. Quality of life and patient satisfaction were assessed by the European Organisation for Research and Treatment of Cancer Core Quality of Life Questionnaire (QLQ-C30), the head and neck cancer module (H\&N35), and the validated Patient Satisfaction Questionnaire Short Form (PSQ-18) at the completion of treatment and compared between trial arms. Results: A total of 100 patients were enrolled in this trial, and 93 patients were evaluable. All patients (100\%) in the experimental arm answered ?80\% of the ePRO questions during treatment, reaching the predefined threshold for the feasibility of ePRO monitoring (P<.001 in the binomial test). No clinical or patient-specific factor was found to influence feasibility. Global health and most domains of the general quality of life were comparable between trial arms, but an increased HNC-specific symptom burden was reported by patients undergoing ePRO surveillance. ePRO monitoring resulted in improved patient satisfaction regarding interpersonal manners (P=.01), financial aspects (P=.01), and time spent with a doctor (P=.01). Conclusions: This trial demonstrated the feasibility of incorporating daily app-based ePRO surveillance for patients with HNC undergoing radiotherapy. Our data, for the first time, demonstrate that telemonitoring in this setting led to increased reporting of HNC-specific symptom burden and significantly improved several domains of patient satisfaction. Further analyses are needed to assess whether our findings hold true outside the context of a clinical trial. Trial Registration: German Clinical Trials Register DRKS00020491; https://drks.de/search/en/trial/DRKS00020491 ", doi="10.2196/46189", url="https://www.jmir.org/2023/1/e46189", url="http://www.ncbi.nlm.nih.gov/pubmed/37856185" } @Article{info:doi/10.2196/49902, author="Newman, Bronwyn and Chin, Melvin and Robinson, Louisa and Chauhan, Ashfaq and Manias, Elizabeth and Wilson, Carlene and Harrison, Reema", title="Improving Medication Safety in Cancer Services for Ethnic Minority Consumers: Protocol for a Pilot Feasibility and Acceptability Study of a Co-Designed Consumer Engagement Intervention", journal="JMIR Res Protoc", year="2023", month="Sep", day="18", volume="12", pages="e49902", keywords="co-design", keywords="ethnic minority", keywords="health care equity", keywords="patient engagement", keywords="patient participation", keywords="patient safety", keywords="medication safety", keywords="medication therapy", keywords="medication therapy management", keywords="patient transfer", keywords="consumer", keywords="engagement", keywords="intervention", abstract="Background: People from ethnic minorities are often exposed to unsafe care contributing to poorer health care outcomes. Medication safety is a high-risk area requiring intervention to improve care outcomes. Using an adapted, experience-based co-design process with cancer service staff and patients from ethnic minorities, a medication communication tool was created: Making it Meaningful (MiM). Objective: We aim to test whether the MiM tool is feasible and acceptable for use with ethnic minority consumers in cancer services in Australia. Methods: A single site, controlled before and after this pilot study, will be used. Patients from Mandarin- and Russian-speaking backgrounds are eligible for inclusion. In total, 40 patients from these cultural backgrounds will be recruited and stratified by language to the intervention and control groups, with 20 participants in the intervention and 20 in the control group. Further, 4 health practitioners will be recruited and trained to use the MiM. Clinicians providing care for patients in the intervention will use the MiM during their usual appointment while providing medication communication using standard care processes for the control group. Telephone surveys will be conducted with participants at 3 time points, T1 before the intervention, T2 1 week post intervention, and T3 1 month post intervention, to assess knowledge and self-efficacy in medication management, perceived usability, and acceptability of the MiM. Qualitative interviews with clinicians who have used the MiM will be conducted 1 month postintervention to explore their perceptions of MiM feasibility and acceptability. Results: Ethical approval for this research has been provided by the South Eastern Sydney Area Health Human Research Ethics Committee (HRECXXX). Bilingual field-workers, 1 Mandarin-speaking and 1 Russian-speaking, are contacting eligible patients to enroll. It is anticipated that recruitment will be completed by October 2023, with data collection completed by December 2023. Conclusions: Using experience-based co-design, we identified communication about medication, particularly between appointments, as a key issue impacting the safety of care for patients from ethnic minorities accessing cancer services. Increasing consumer engagement in medication management was identified as a strategy to reduce medication safety problems in cancer care; the MiM strategy was developed to address this issue. It is anticipated that by using the MiM, patient knowledge about prescribed medications and confidence in medication management will increase. Evidence from the pilot study will be used to inform a full-scale trial of the MiM tool with a range of ethnic minority communities accessing cancer services. A full-scale trial will seek to determine whether the MiM intervention is effective in knowledge and confidence about medication management, but also whether this improves patient outcomes in cancer care. Trial Registration: Australian New Zealand Clinical Trials ACTRN12622001260718p; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=384658\&isReview=true International Registered Report Identifier (IRRID): DERR1-10.2196/49902 ", doi="10.2196/49902", url="https://www.researchprotocols.org/2023/1/e49902", url="http://www.ncbi.nlm.nih.gov/pubmed/37721784" } @Article{info:doi/10.2196/49775, author="Petros, Gebrewold Nuhamin and Alvarsson-Hjort, Jesper and Hadlaczky, Gerg{\"o} and Wasserman, Danuta and Ottaviano, Manuel and Gonzalez-Martinez, Sergio and Carletto, Sara and Scilingo, Pasquale Enzo and Valenza, Gaetano and Carli, Vladimir", title="Predictors of the Use of a Mental Health--Focused eHealth System in Patients With Breast and Prostate Cancer: Bayesian Structural Equation Modeling Analysis of a Prospective Study", journal="JMIR Cancer", year="2023", month="Sep", day="12", volume="9", pages="e49775", keywords="mental health", keywords="eHealth system", keywords="perceived usefulness", keywords="structural equation modeling", keywords="cancer", keywords="NEVERMIND system", keywords="usability", keywords="digital health", keywords="Technology Acceptance Model", abstract="Background: eHealth systems have been increasingly used to manage depressive symptoms in patients with somatic illnesses. However, understanding the factors that drive their use, particularly among patients with breast and prostate cancer, remains a critical area of research. Objective: This study aimed to determine the factors influencing use of the NEVERMIND eHealth system among patients with breast and prostate cancer over 12 weeks, with a focus on the Technology Acceptance Model. Methods: Data from the NEVERMIND trial, which included 129 patients with breast and prostate cancer, were retrieved. At baseline, participants completed questionnaires detailing demographic data and measuring depressive and stress symptoms using the Beck Depression Inventory--II and the Depression, Anxiety, and Stress Scale--21, respectively. Over a 12-week period, patients engaged with the NEVERMIND system, with follow-up questionnaires administered at 4 weeks and after 12 weeks assessing the system's perceived ease of use and usefulness. Use log data were collected at the 2- and 12-week marks. The relationships among sex, education, baseline depressive and stress symptoms, perceived ease of use, perceived usefulness (PU), and system use at various stages were examined using Bayesian structural equation modeling in a path analysis, a technique that differs from traditional frequentist methods. Results: The path analysis was conducted among 100 patients with breast and prostate cancer, with 66\% (n=66) being female and 81\% (n=81) having a college education. Patients reported good mental health scores, with low levels of depression and stress at baseline. System use was approximately 6 days in the initial 2 weeks and 45 days over the 12-week study period. The results revealed that PU was the strongest predictor of system use at 12 weeks ($\beta$use at 12 weeks is predicted by PU at 12 weeks=.384), whereas system use at 2 weeks moderately predicted system use at 12 weeks ($\beta$use at 12 weeks is predicted by use at 2 weeks=.239). Notably, there were uncertain associations between baseline variables (education, sex, and mental health symptoms) and system use at 2 weeks, indicating a need for better predictors for early system use. Conclusions: This study underscores the importance of PU and early engagement in patient engagement with eHealth systems such as NEVERMIND. This suggests that, in general eHealth implementations, caregivers should educate patients about the benefits and functionalities of such systems, thus enhancing their understanding of potential health impacts. Concentrating resources on promoting early engagement is also essential given its influence on sustained use. Further research is necessary to clarify the remaining uncertainties, enabling us to refine our strategies and maximize the benefits of eHealth systems in health care settings. ", doi="10.2196/49775", url="https://cancer.jmir.org/2023/1/e49775", url="http://www.ncbi.nlm.nih.gov/pubmed/37698900" } @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/10.2196/44707, 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/10.2196/49490, author="Elkefi, Safa and Asan, Onur", title="Perceived Patient Workload and Its Impact on Outcomes During New Cancer Patient Visits: Analysis of a Convenience Sample", journal="JMIR Hum Factors", year="2023", month="Aug", day="18", volume="10", pages="e49490", keywords="health care", keywords="cancer patients' workload", keywords="trust", keywords="satisfaction", keywords="health information technology", abstract="Background: Studies exploring the workload in health care focus on the doctors' perspectives. The ecology of the health care environment is critical and different for doctors and patients. Objective: In this study, we explore the patient workload among newly diagnosed patients with cancer during their first visit and its impact on the patient's perceptions of the quality of care (their trust in their doctors, their satisfaction with the care visits, their perception of technology use). Methods: We collected data from the Hackensack Meridian Health, John Theurer Cancer Center between February 2021 and May 2022. The technology use considered during the visit is related to doctors' use of electronic health records. A total of 135 participants were included in the study. Most participants were 50-64 years old (n=91, 67.41\%). A majority (n=81, 60\%) of them were White, and only (n=16, 11.85\%) went to graduate schools. Results: The findings captured the significant effect of overall workload on trust in doctors and perception of health IT use within the visits. On the other hand, the overall workload did not impact patients' satisfaction during the visit. A total of 80\% (n=108) of patients experienced an overall high level of workload. Despite almost 55\% (n=75) of them experiencing a high mental load, 71.1\% (n=96) reported low levels of effort, 89\% (n=120) experienced low time pressure, 85.2\% (n=115) experienced low frustration levels, and 69.6\% (n=94) experienced low physical activity. The more overall workload patients felt, the less they trusted their doctors (odds ratio [OR] 0.059, 95\% CI 0.001-2.34; P=.007). Low trust was also associated with the demanding mental tasks in the visits (OR 0.055, 95\% CI 0.002-2.64; P<.001), the physical load (OR 0.194, 95\% CI 0.004-4.23; P<.001), the time load (OR 0.183, 95\% CI 0.02-2.35; P=.046) the effort needed to cope with the environment (OR 0.163, 95\% CI 0.05-1.69; P<.001), and the frustration levels (OR 0.323, 95\% CI 0.04-2.55; P=.03). The patients' perceptions of electronic health record use during the visit were negatively impacted by the overall workload experienced by the patients (OR 0.315, 95\% CI 0.08-6.35; P=.01) and the high frustration level experienced (OR 0.111, 95\% CI 0.015-3.75; P<.001). Conclusions: The study's findings established pathways for future research and have implications for cancer patients' workload. Better technology design and use can minimize perceived workload, which might contribute to the trust relationship between doctors and patients in this critical environment. Future human factors work needs to explore the workload and driving factors in longitudinal studies and assess whether these workloads might contribute to unintended patient outcomes and medical errors. ", doi="10.2196/49490", url="https://humanfactors.jmir.org/2023/1/e49490", url="http://www.ncbi.nlm.nih.gov/pubmed/37594798" } @Article{info:doi/10.2196/43345, author="Xing, Zhaoquan and Ji, Meng and Shan, Yi and Dong, Zhaogang and Xu, Xiaofei", title="Using the Multidimensional Health Locus of Control Scale Form C to Investigate Health Beliefs About Bladder Cancer Prevention and Treatment Among Male Patients: Cross-Sectional Study", journal="JMIR Form Res", year="2023", month="Aug", day="16", volume="7", pages="e43345", keywords="health beliefs", keywords="Multidimensional Health Locus of Control", keywords="Chinese translation", keywords="bladder cancer prevention and treatment", keywords="male patients", keywords="latent class analysis", abstract="Background: Bladder cancer is a leading cause of death among Chinese male populations in recent years. The health locus of control construct can mediate health status and outcomes, and it has proven helpful in predicting and explaining specific health-related behaviors. However, it has never been used to investigate health beliefs about bladder cancer prevention and treatment. Objective: This study aimed to classify male patients into different latent groups according to their beliefs about bladder cancer prevention and treatment and to identify associated factors to provide implications for the delivery of tailored education and interventions and the administration of targeted prevention and treatment. Methods: First, we designed a four-section questionnaire to solicit data: section 1---age, gender, and education; section 2---the communicative subscale of the All Aspects of Health Literacy Scale; section 3---the eHealth Literacy Scale; and section 4---health beliefs about bladder cancer prevention and treatment measured by the Multidimensional Health Locus of Control Scale Form C. We hypothesized that the participants' health beliefs about bladder cancer prevention and treatment measured in section 4 could be closely associated with information collected through sections 1 to 3. We recruited 718 Chinese male patients from Qilu Hospital of Shandong University, China, and invited them to participate in a web-based questionnaire survey. Finally, we used latent class analysis to identify subgroups of men based on their categorical responses to the items on the Multidimensional Health Locus of Control Scale Form C and ascertained factors contributing to the low self-efficacy group identified. Results: We identified 2 subgroups defined as low and moderate self-efficacy groups representing 75.8\% (544/718) and 24.2\% (174/718) of the total sample, respectively. Men in the low self-efficacy cluster (cluster 1: 544/718, 75.8\%) were less likely to believe in their own capability or doctors' advice to achieve optimal outcomes in bladder cancer prevention and treatment. Men in the moderate self-efficacy cluster (cluster 2: 174/718, 24.2\%) had distinct psychological traits. They had stronger beliefs in their own capability to manage their health with regard to bladder cancer prevention and treatment and moderate to high levels of trust in health and medical professionals and their advice to achieve better prevention and treatment outcomes. Four factors contributing to low self-efficacy were identified, including limited education (Year 6 to Year 12), aged ?44 years, limited communicative health literacy, and limited digital health literacy. Conclusions: This was the first study investigating beliefs about bladder cancer prevention and treatment among Chinese male patients. Given that bladder cancer represents a leading cause of death among Chinese male populations in recent years, the low self-efficacy cluster and associated contributing factors identified in this study can provide implications for clinical practice, health education, medical research, and health policy-making. ", doi="10.2196/43345", url="https://formative.jmir.org/2023/1/e43345", url="http://www.ncbi.nlm.nih.gov/pubmed/37585255" } @Article{info:doi/10.2196/43024, author="Guo, Monica and Brar Prayaga, Rena and Levitz, E. Carly and Kuo, S. Elena and Ruiz, Esmeralda and Torres-Ozadali, Evelyn and Escaron, Anne", title="Tailoring a Text Messaging and Fotonovela Program to Increase Patient Engagement in Colorectal Cancer Screening in a Large Urban Community Clinic Population: Quality Improvement Project", journal="JMIR Cancer", year="2023", month="Aug", day="10", volume="9", pages="e43024", keywords="colorectal cancer screening", keywords="texting program", keywords="fotonovela", keywords="fecal immunochemical test", keywords="FIT", keywords="FIT kit", keywords="thematic analysis", keywords="mobile phone", abstract="Background: Appropriate annual screenings for colorectal cancer (CRC) are an essential preventive measure for the second-leading cause of cancer-related death in the United States. Studies have shown that CRC screening rates are influenced by various social determinants of health (SDOH) factors, including race, ethnicity, and geography. According to 2018 national data, participation in screening is lowest among Hispanic or Latinx individuals (56.1\%). At an urban Federally Qualified Health Center, a quality improvement project was conducted to evaluate a texting program with a motivational fotonovela---a short narrative comic. Fotonovelas have previously been used in programs to improve knowledge of cervical cancer and human papillomavirus, vaccinations, and treatments for depression. Objective: This study aimed to encourage compliance with fecal immunochemical test (FIT) screening. Patient engagement involved a texting program with fotonovelas informed by behavior change techniques. This study sought to understand the qualitative characteristics of patient motivation, intention, and barriers to completing their screening. Methods: A total of 5241 English-speaking or Spanish-speaking Federally Qualified Health Center patients aged 50 to 75 years were randomized to either intervention (a 4-week tailored 2-way texting program with a fotonovela comic) or usual care (an SMS text message reminder and patient navigator phone call). The texting vendor used a proprietary algorithm to categorize patients in the intervention group into SDOH bands based on their home addresses (high impact=high social needs and low impact=low social needs). Over 4 weeks, patients were texted questions about receiving and returning their FIT, what barriers they may be experiencing, and their thoughts about the fotonovela. Results: The SDOH index analysis showed that most of the patient population was in the SDOH band categories of high impact (555/2597, 21.37\%) and very high impact (1416/2597, 54.52\%). Patients sent 1969 total responses to the texting system. Thematic analysis identified 3 major themes in these responses: messages as a reminder, where patients reported that they were motivated to return the FIT and had already done so or would do so as soon as possible; increasing patients' understanding of screening importance, where patients expressed an increased knowledge about the purpose and importance of the FIT; and expressing barriers, where patients shared reasons for not completing the FIT. Conclusions: The texting program and fotonovela engaged a subset of patients in each SDOH band, including the high and very high impact bands. Creating culturally tailored messages can encourage patient engagement for accepting the content of the messaging, confirming intentions to complete their FIT, and sharing insights about barriers to behavior change. To better support all patients across the continuum of care with CRC screening, it is important to continue to develop and assess strategies that engage patients who did not return their home-mailed FIT. ", doi="10.2196/43024", url="https://cancer.jmir.org/2023/1/e43024", url="http://www.ncbi.nlm.nih.gov/pubmed/37561562" } @Article{info:doi/10.2196/37553, author="Lee, Jungmin and Keil, Mark and Lee, Seok Jong and Baird, Aaron and Choi, Hyoung-Yong", title="Gender Effects on the Impact of Colorectal Cancer Risk Calculators on Screening Intentions: Experimental Study", journal="JMIR Form Res", year="2023", month="Jun", day="12", volume="7", pages="e37553", keywords="colorectal", keywords="cancer", keywords="oncology", keywords="risk calculator", keywords="risk", keywords="perceived susceptibility", keywords="susceptibility", keywords="gender", keywords="intention", keywords="randomized", keywords="randomization", keywords="screening", keywords="perception", keywords="prevention", abstract="Background: According to a 2020 study by the American Cancer Society, colorectal cancer (CRC) represents the third leading cause of cancer both in incidence and death in the United States. Nonetheless, CRC screening remains lower than that for other high-risk cancers such as breast and cervical cancer. Risk calculators are increasingly being used to promote cancer awareness and improve compliance with CRC screening tests. However, research concerning the effects of CRC risk calculators on the intention to undergo CRC screening has been limited. Moreover, some studies have found the impacts of CRC risk calculators to be inconsistent, reporting that receiving personalized assessments from such calculators lowers people's risk perception. Objective: The objective of this study is to examine the effect of using CRC risk calculators on individuals' intentions to undergo CRC screening. In addition, this study aims to examine the mechanisms through which using CRC risk calculators might influence individuals' intentions to undergo CRC screening. Specifically, this study focuses on the role of perceived susceptibility to CRC as a potential mechanism mediating the effect of using CRC risk calculators. Finally, this study examines how the effect of using CRC risk calculators on individuals' intentions to undergo CRC screening may vary by gender. Methods: We recruited a total of 128 participants through Amazon Mechanical Turk who live in the United States, have health insurance, and are in the age group of 45 to 85 years. All participants answered questions needed as input for the CRC risk calculator but were randomly assigned to treatment (CRC risk calculator results immediately received) and control (CRC risk calculator results made available after the experiment ended) groups. The participants in both groups answered a series of questions regarding demographics, perceived susceptibility to CRC, and their intention to get screened. Results: We found that using CRC risk calculators (ie, answering questions needed as input and receiving calculator results) has a positive effect on intentions to undergo CRC screening, but only for men. For women, using CRC risk calculators has a negative effect on their perceived susceptibility to CRC, which in turn reduces the intention to sign up for CRC screening. Additional simple slope and subgroup analyses confirm that the effect of perceived susceptibility on CRC screening intention is moderated by gender. Conclusions: This study shows that using CRC risk calculators can increase individuals' intentions to undergo CRC screening, but only for men. For women, using CRC risk calculators can reduce their intentions to undergo CRC screening, as it reduces their perceived susceptibility to CRC. Given these mixed results, although CRC risk calculators can be a useful source of information on one's CRC risk, patients should be discouraged from relying solely on them to inform decisions regarding CRC screening. ", doi="10.2196/37553", url="https://formative.jmir.org/2023/1/e37553", url="http://www.ncbi.nlm.nih.gov/pubmed/37307035" } @Article{info:doi/10.2196/43002, author="Shan, Yi and Ji, Meng", title="The Chinese Version of the Breast Cancer Literacy Assessment Tool: Translation, Adaptation, and Validation Study", journal="JMIR Form Res", year="2023", month="Apr", day="19", volume="7", pages="e43002", keywords="breast cancer literacy assessment tool", keywords="translation", keywords="adaptation", keywords="psychometric evaluation", keywords="validity", keywords="reliability", keywords="breast cancer", keywords="cancer", keywords="tool", keywords="women", keywords="prevention", keywords="detection", keywords="intervention", keywords="assessment", keywords="education", keywords="breast cancer literacy", keywords="assessment tool", keywords="cancer awareness", keywords="health literacy", abstract="Background: Breast cancer is the most common cancer among Chinese women, with an age-standardized prevalence of 21.6 cases per 100,000 women. Limited cancer health literacy reduces females' ability to engage in cancer prevention and detection. It is necessary to assess Chinese women's breast cancer literacy to deliver targeted interventions and effective education. However, there is no Breast Cancer Literacy Assessment Tool (B-CLAT) available in China currently. Objective: This study aimed to translate and linguistically and culturally adapt the B-CLAT into a simplified-Chinese version (C-B-CLAT), and then validate its psychometric properties by administering it to Chinese college students. Methods: First, we translated the B-CLAT into a simplified-Chinese version and verified its validity and reliability using rigorous translation and validation guidelines proposed in previous studies. We then evaluated the psychometric properties among 50 female participants with a mean age of 19.62 (SD 1.31) years recruited from Nantong University, China. Results: Items 1, 6, 8, 9, 10, 16, 17, 20, 21, 22, 23, 24, 25, 26, 29, and 30 were deleted to increase the relevant subscale internal consistency. Items 3, 12, 13, 14, 18, 20, 27, and 31 were deleted due to their Cronbach $\alpha$ being lower than .5 in the test-retest analysis. After deletion, the internal consistency of the entire scale was fair with $\alpha$=.607. The prevention and control subscale had the highest internal consistency with $\alpha$=.730, followed by the screening and knowledge subscale with $\alpha$=.509, while the awareness subscale had the lowest internal consistency with $\alpha$=.224. The intraclass correlation coefficient for the C-B-CLAT (items 2, 4, 5, 7, 11, 15, 28, 32, 33, and 34) was fair to excellent (odds ratio [OR] 0.88, 95\% CI 0.503-0.808). The values of Cronbach $\alpha$ for items 2, 4, 5, 7, 11, 15, 28, 32, 33, and 34 ranged from .499 to .806, and the $\alpha$ value for the C-B-CLAT was .607. This indicates fair test-retest reliability. The mean difference in the C-B-CLAT scores between stage 1 and stage 2 was 0.47 (OR 0.67, 95\% CI ?0.53 to 1.47), which was not significantly different from zero (t48=0.945; P=.35). This result implies that the C-B-CLAT produced the same scores at stage 1 and stage 2 on average, thus showing good agreement in the C-B-CLAT scores between stage 1 and stage 2. The SD of the difference was 3.48. The 95\% limits of agreement were ?6.34 to 7.28. Conclusions: We developed a simplified-Chinese version of the B-CLAT through translation and adaptation. Psychometric properties testing has proven this version valid and reliable for assessing breast cancer literacy among Chinese college students. ", doi="10.2196/43002", url="https://formative.jmir.org/2023/1/e43002", url="http://www.ncbi.nlm.nih.gov/pubmed/37074784" } @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/10.2196/42782, author="Shan, Yi and Ji, Meng and Xing, Zhaoquan and Dong, Zhaogang and Xu, Xiaofei", title="Susceptibility to Breast Cancer Misinformation Among Chinese Patients: Cross-sectional Study", journal="JMIR Form Res", year="2023", month="Apr", day="5", volume="7", pages="e42782", keywords="susceptibility", keywords="breast cancer misinformation", keywords="Chinese patients", keywords="logistic regression", keywords="predicting factors", keywords="cancer", keywords="misinformation", keywords="China", keywords="breast cancer", keywords="policy", keywords="age", keywords="gender", keywords="education", keywords="literacy", keywords="clinical", abstract="Background: Currently, breast cancer is the most commonly diagnosed cancer and the sixth-leading cause of cancer-related deaths among Chinese women. Worse still, misinformation contributes to the aggravation of the breast cancer burden in China. There is a pressing need to investigate the susceptibility to breast cancer misinformation among Chinese patients. However, no study has been performed in this respect. Objective: This study aims to ascertain whether some demographics (age, gender, and education), some health literacy skills, and the internal locus of control are significantly associated with the susceptibility to misinformation about all types of breast cancers among randomly sampled Chinese patients of both genders in order to provide insightful implications for clinical practice, health education, medical research, and health policy making. Methods: We first designed a questionnaire comprising 4 sections of information: age, gender, and education (section 1); self-assessed disease knowledge (section 2); the All Aspects of Health Literacy Scale (AAHLS), the eHealth Literacy Scale (eHEALS), the 6-item General Health Numeracy Test (GHNT-6), and the ``Internal'' subscale of the Multidimensional Health Locus of Control (MHLC) scales (section 3); and 10 breast cancer myths collected from some officially registered and authenticated websites (section 4). Subsequently, we recruited patients from Qilu Hospital of Shandong University, China, using randomized sampling. The questionnaire was administered via wenjuanxing, the most popular online survey platform in China. The collected data were manipulated in a Microsoft Excel file. We manually checked the validity of each questionnaire using the predefined validity criterion. After that, we coded all valid questionnaires according to the predefined coding scheme, based on Likert scales of different point (score) ranges for different sections of the questionnaire. In the subsequent step, we calculated the sums of the subsections of the AAHLS and the sums of the 2 health literacy scales (the eHEALS and GHNT-6) and the 10 breast cancer myths. Finally, we applied logistic regression modeling to relate the scores in section 4 to the scores in sections 1-3 of the questionnaire to identify what significantly contributes to the susceptibility to breast cancer misinformation among Chinese patients. Results: All 447 questionnaires collected were valid according to the validity criterion. The participants were aged 38.29 (SD 11.52) years on average. The mean score for their education was 3.68 (SD 1.46), implying that their average educational attainment was between year 12 and a diploma (junior college). Of the 447 participants, 348 (77.85\%) were women. The mean score for their self-assessed disease knowledge was 2.50 (SD 0.92), indicating that their self-assessed disease knowledge status was between ``knowing a lot'' and ``knowing some.'' The mean scores of the subconstructs in the AAHLS were 6.22 (SD 1.34) for functional health literacy, 5.22 (SD 1.54) for communicative health literacy, and 11.19 (SD 1.99) for critical health literacy. The mean score for eHealth literacy was 24.21 (SD 5.49). The mean score for the 6 questions in the GHNT-6 was 1.57 (SD 0.49), 1.21 (SD 0.41), 1.24 (SD 0.43), 1.90 (SD 0.30), 1.82 (SD 0.39), and 1.73 (SD 0.44), respectively. The mean score for the patients' health beliefs and self-confidence was 21.19 (SD 5.63). The mean score for their response to each myth ranged from 1.24 (SD 0.43) to 1.67 (SD 0.47), and the mean score for responses to the 10 myths was 14.03 (SD 1.78). Through interpreting these descriptive statistics, we found that Chinese female patients' limited ability to rebut breast cancer misinformation is mainly attributed to 5 factors: (1) lower communicative health literacy, (2) certainty about self-assessed eHealth literacy skills, (3) lower general health numeracy, (4) positive self-assessment of general disease knowledge, and (5) more negative health beliefs and lower levels of self-confidence. Conclusions: Drawing on logistic regression modeling, we studied the susceptibility to breast cancer misinformation among Chinese patients. The predicting factors of the susceptibility to breast cancer misinformation identified in this study can provide insightful implications for clinical practice, health education, medical research, and health policy making. ", doi="10.2196/42782", url="https://formative.jmir.org/2023/1/e42782", url="http://www.ncbi.nlm.nih.gov/pubmed/37018020" } @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/10.2196/37801, author="Armin, S. Julie and Williamson, J. Heather and Rothers, Janet and Lee, S. Michele and Baldwin, A. Julie", title="An Adapted Cancer Screening Education Program for Native American Women With Intellectual and Developmental Disabilities and Their Caregivers: Protocol for Feasibility and Acceptability Testing", journal="JMIR Res Protoc", year="2023", month="Feb", day="13", volume="12", pages="e37801", keywords="community-engaged research", keywords="community-engaged", keywords="engagement", keywords="cancer", keywords="breast", keywords="cervical", keywords="screening", keywords="breast cancer screening", keywords="cervical cancer screening", keywords="intellectual", keywords="developmental", keywords="cognitive", keywords="disability", keywords="disabilities", keywords="Native American", keywords="indigenous", keywords="women's health", keywords="feasibility", keywords="acceptability", keywords="patient education", keywords="prevention", keywords="patient knowledge", keywords="health knowledge", keywords="health education", abstract="Background: Women with intellectual and developmental disabilities (IDD) do not undergo breast and cervical cancer screening at the same rate as women without IDD. IDDs are diagnosed in childhood, are lifelong, and involve difficulties in adaptive behaviors and intellectual functioning. Native American women also experience disparities in breast and cervical cancer screenings. Despite known disparities, women with IDD are often not included in health promotion programs, and there is a need for evidence-based programming for those with intersectional identities, such as Native American women with IDD. Objective: This study aims to assess the feasibility and acceptability of My Health My Choice (MHMC), an adaptation of the Women Be Healthy 2 program. There are 2 parts to the study: adaptation of the Women Be Healthy 2 program and feasibility and acceptability testing of MHMC. Methods: Individuals aged over 18 years who identify as Native American females with IDD and their caregivers (N=30 women-caregiver dyads) are eligible for the study. Participants, who are affiliated with 2 partnering sites in Arizona (1 rural and 1 urban), complete pre- and postsurveys assessing knowledge, self-efficacy, and screening expectations before and immediately after completing the program. In addition, all participants complete brief satisfaction surveys after each of the 6 educational sessions. A subsample of Native American women with an IDD (n=12), caregivers (n=12), and community health educators (n=2) who participate in the MHMC program will provide semistructured qualitative input regarding the content, delivery, and cultural relevance of the program. Results: The adaptation of the culturally responsive MHMC program was completed in August 2021. In November 2021, the project team began recruitment for feasibility and acceptability studies. Feasibility will be examined using participation metrics, and acceptability will be measured using satisfaction measures. Pre- and postmeasures in cancer screening knowledge, self-efficacy, and screening expectations will examine improvements among participants. Conclusions: The results of feasibility and acceptability testing of MHMC will guide future implementation studies of the program. International Registered Report Identifier (IRRID): DERR1-10.2196/37801 ", doi="10.2196/37801", url="https://www.researchprotocols.org/2023/1/e37801", url="http://www.ncbi.nlm.nih.gov/pubmed/36780214" } @Article{info:doi/10.2196/36197, author="Orumaa, Madleen and Campbell, Suzanne and St{\o}er, C. Nathalie and Castle, E. Philip and Sen, Sagar and Trop{\'e}, Ameli and Adedimeji, Adebola and Nyg{\aa}rd, Mari", title="Impact of the Mobile Game FightHPV on Cervical Cancer Screening Attendance: Retrospective Cohort Study", journal="JMIR Serious Games", year="2022", month="Dec", day="13", volume="10", number="4", pages="e36197", keywords="mobile app", keywords="gamification", keywords="empowering", keywords="health literacy", keywords="cervical cancer screening", keywords="cancer prevention", abstract="Background: The wide availability of mobile phones has made it easy to disseminate health-related information and make it accessible. With gamification, mobile apps can nudge people to make informed health choices, including attending cervical cancer screening. Objective: This matched retrospective cohort study examined the association between exposure to the FightHPV mobile app gamified educational content and having a cervical exam in the following year. Methods: Women aged 20 to 69 years who signed an electronic consent form after downloading the FightHPV app in 2017 (intervention group) were matched 1:6 with women of the same age and with the same screening history (reference group) in 2015. To estimate the impact of exposure to the FightHPV app, we estimated cumulative incidence and hazard ratios (HRs) with 95\% CIs. We used data from the Norwegian Cervical Cancer Screening Program database and Statistics Norway to determine screening participation and outcomes, respectively. Results: We matched 3860 women in the control group to 658 women in the intervention group; 6 months after enrollment, 29.6\% (195/658) of the women in the intervention group and 15.21\% (587/3860) of those in the reference group underwent a cervical exam (P<.01). Women exposed to the FightHPV app were 2 times more likely to attend screening (adjusted HR 2.3, 95\% CI 2.0-2.7), during which they were 13 times more likely to be diagnosed with high-grade abnormality (adjusted HR 12.7, 95\% CI 5.0-32.5) than the women in the reference group. Conclusions: Exposure to the FightHPV app significantly increased cervical cancer screening attendance across the various analyses and improved detection of women with high risk for cervical cancer. For the first time, we demonstrated the effectiveness of gamification combined with mobile technology in cancer prevention by empowering women to make active health-related decisions. Gamification can significantly improve the understanding of complicated scientific concepts behind interventions and increase the acceptance of proposed cancer control measures. ", doi="10.2196/36197", url="https://games.jmir.org/2022/4/e36197", url="http://www.ncbi.nlm.nih.gov/pubmed/36512401" } @Article{info:doi/10.2196/39443, author="Rebelo, Nathanael and Sanders, Leslie and Li, Kay and Chow, L. James C.", title="Learning the Treatment Process in Radiotherapy Using an Artificial Intelligence--Assisted Chatbot: Development Study", journal="JMIR Form Res", year="2022", month="Dec", day="2", volume="6", number="12", pages="e39443", keywords="chatbot", keywords="artificial intelligence", keywords="machine learning", keywords="radiotherapy chain", keywords="radiation treatment process", keywords="communication", keywords="diagnosis", keywords="cancer therapy", keywords="internet of things", keywords="radiation oncology", keywords="medical physics", keywords="health care", abstract="Background: In knowledge transfer for educational purposes, most cancer hospital or center websites have existing information on cancer health. However, such information is usually a list of topics that are neither interactive nor customized to offer any personal touches to people facing dire health crisis and to attempt to understand the concerns of the users. Patients with cancer, their families, and the general public accessing the information are often in challenging, stressful situations, wanting to access accurate information as efficiently as possible. In addition, there is seldom any comprehensive information specifically on radiotherapy, despite the large number of older patients with cancer, to go through the treatment process. Therefore, having someone with professional knowledge who can listen to them and provide the medical information with good will and encouragement would help patients and families struggling with critical illness, particularly during the lingering pandemic. Objective: This study created a novel virtual assistant, a chatbot that can explain the radiation treatment process to stakeholders comprehensively and accurately, in the absence of any similar software. This chatbot was created using the IBM Watson Assistant with artificial intelligence and machine learning features. The chatbot or bot was incorporated into a resource that can be easily accessed by the general public. Methods: The radiation treatment process in a cancer hospital or center was described by the radiotherapy process: patient diagnosis, consultation, and prescription; patient positioning, immobilization, and simulation; 3D-imaging for treatment planning; target and organ contouring; radiation treatment planning; patient setup and plan verification; and treatment delivery. The bot was created using IBM Watson (IBM Corp) assistant. The natural language processing feature in the Watson platform allowed the bot to flow through a given conversation structure and recognize how the user responds based on recognition of similar given examples, referred to as intents during development. Therefore, the bot can be trained using the responses received, by recognizing similar responses from the user and analyzing using Watson natural language processing. Results: The bot is hosted on a website by the Watson application programming interface. It is capable of guiding the user through the conversation structure and can respond to simple questions and provide resources for requests for information that was not directly programmed into the bot. The bot was tested by potential users, and the overall averages of the identified metrics are excellent. The bot can also acquire users' feedback for further improvements in the routine update. Conclusions: An artificial intelligence--assisted chatbot was created for knowledge transfer regarding radiation treatment process to the patients with cancer, their families, and the general public. The bot that is supported by machine learning was tested, and it was found that the bot can provide information about radiotherapy effectively. ", doi="10.2196/39443", url="https://formative.jmir.org/2022/12/e39443", url="http://www.ncbi.nlm.nih.gov/pubmed/36327383" } @Article{info:doi/10.2196/32153, author="Nanton, Veronica and Appleton, Rebecca and Ahmed, Nisar and Loew, Joelle and Roscoe, Julia and Muthuswamy, Radha and Patel, Prashant and Dale, Jeremy and Ahmedzai, H. Sam", title="A Web-Based Prostate Cancer--Specific Holistic Needs Assessment (CHAT-P): Multimethod Study From Concept to Clinical Practice", journal="JMIR Cancer", year="2022", month="Oct", day="19", volume="8", number="4", pages="e32153", keywords="Holistic Needs Assessment", keywords="prostate cancer", keywords="survivorship", keywords="cancer follow-up", keywords="coproduction", keywords="web-based communication", keywords="care planning", abstract="Background: Men with prostate cancer experience immediate and long-term consequences of the disease and its treatment. They require both long-term monitoring for recurrence or progression and follow-up to identify and help manage psychosocial and physical impacts. Holistic Needs Assessment aims to ensure patient-centered continuing cancer care. However, paper-based generic tools have had limited uptake within cancer services, and there is little evidence of their impact. With the expansion of remote methods of care delivery and to enhance the value of generic tools, we developed a web-based Composite Holistic Needs Assessment Adaptive Tool-Prostate (CHAT-P) specifically for prostate cancer. Objective: This paper described the context, conceptual underpinning, and approach to design that informed the development of CHAT-P, starting from the initial concept to readiness for deployment. Through this narrative, we sought to contribute to the expanding body of knowledge regarding the coproduction process of innovative digital systems with potential for enhanced cancer care delivery. Methods: The development of CHAT-P was guided by the principles of coproduction. Men with prostate cancer and health care professionals contributed to each stage of the process. Testing was conducted iteratively over a 5-year period. An initial rapid review of patient-reported outcome measures identified candidate items for inclusion. These items were categorized and allocated to overarching domains. After the first round of user testing, further items were added, improvements were made to the adaptive branching system, and response categories were refined. A functioning version of CHAT-P was tested with 16 patients recruited from 3 outpatient clinics, with interviewers adopting the think-aloud technique. Interview transcripts were analyzed using a framework approach. Interviews and informal discussions with health care professionals informed the development of a linked care plan and clinician-facing platform, which were incorporated into a separate feasibility study of digitally enhanced integrated cancer care. Results: The findings from the interview study demonstrated the usability, acceptability, and potential value of CHAT-P. Men recognized the benefits of a personalized approach and the importance of a holistic understanding of their needs. Preparation for the consultation by the completion of CHAT-P was also recognized as empowering. The possible limitations identified were related to the importance of care teams responding to the issues selected in the assessment. The subsequent feasibility study highlighted the need for attention to men's psychological concerns and demonstrated the ability of CHAT-P to capture red flag symptoms requiring urgent investigation. Conclusions: CHAT-P offers an innovative means by which men can communicate their concerns to their health care teams before a physical or remote consultation. There is now a need for a full evaluation of the implementation process and outcomes where CHAT-P is introduced into the clinical pathway. There is also scope for adapting the CHAT-P model to other cancers. ", doi="10.2196/32153", url="https://cancer.jmir.org/2022/4/e32153", url="http://www.ncbi.nlm.nih.gov/pubmed/36260380" } @Article{info:doi/10.2196/37793, author="Raj, Minakshi and Ryan, Kerry and Nong, Paige and Calhoun, Karen and Trinidad, Grace M. and De Vries, Raymond and Creary, Melissa and Spector-Bagdady, Kayte and Kardia, R. Sharon L. and Platt, Jodyn", title="Public Deliberation Process on Patient Perspectives on Health Information Sharing: Evaluative Descriptive Study", journal="JMIR Cancer", year="2022", month="Sep", day="16", volume="8", number="3", pages="e37793", keywords="public deliberation", keywords="data sharing", keywords="health information exchange", keywords="patient engagement", keywords="health information", keywords="sharing", keywords="cancer", keywords="oncology", keywords="precision oncology", keywords="information", keywords="policy", keywords="personalized medicine", keywords="public preference", abstract="Background: Precision oncology is one of the fastest-developing domains of personalized medicine and is one of many data-intensive fields. Policy for health information sharing that is informed by patient perspectives can help organizations align practice with patient preferences and expectations, but many patients are largely unaware of the complexities of how and why clinical health information is shared. Objective: This paper evaluates the process of public deliberation as an approach to understanding the values and preferences of current and former patients with cancer regarding the use and sharing of health information collected in the context of precision oncology. Methods: We conducted public deliberations with patients who had a current or former cancer diagnosis. A total of 61 participants attended 1 of 2 deliberative sessions (session 1, n=28; session 2, n=33). Study team experts led two educational plenary sessions, and trained study team members then facilitated discussions with small groups of participants. Participants completed pre- and postdeliberation surveys measuring knowledge, attitudes, and beliefs about precision oncology and data sharing. Following informational sessions, participants discussed, ranked, and deliberated two policy-related scenarios in small groups and in a plenary session. In the analysis, we evaluate our process of developing the deliberative sessions, the knowledge gained by participants during the process, and the extent to which participants reasoned with complex information to identify policy preferences. Results: The deliberation process was rated highly by participants. Participants felt they were listened to by their group facilitator, that their opinions were respected by their group, and that the process that led to the group's decision was fair. Participants demonstrated improved knowledge of health data sharing policies between pre- and postdeliberation surveys, especially regarding the roles of physicians and health departments in health information sharing. Qualitative analysis of reasoning revealed that participants recognized complexity, made compromises, and engaged with trade-offs, considering both individual and societal perspectives related to health data sharing. Conclusions: The deliberative approach can be valuable for soliciting the input of informed patients on complex issues such as health information sharing policy. Participants in our two public deliberations demonstrated that giving patients information about a complex topic like health data sharing and the opportunity to reason with others and discuss the information can help garner important insights into policy preferences and concerns. Data on public preferences, along with the rationale for information sharing, can help inform policy-making processes. Increasing transparency and patient engagement is critical to ensuring that data-driven health care respects patient autonomy and honors patient values and expectations. ", doi="10.2196/37793", url="https://cancer.jmir.org/2022/3/e37793", url="http://www.ncbi.nlm.nih.gov/pubmed/36112409" } @Article{info:doi/10.2196/34264, author="Dodd, H. Rachael and Zhang, Chenyue and Sharman, R. Ashleigh and Carlton, Julie and Tang, Ruijin and Rankin, M. Nicole", title="Assessing Information Available for Health Professionals and Potential Participants on Lung Cancer Screening Program Websites: Cross-sectional Study", journal="JMIR Cancer", year="2022", month="Aug", day="30", volume="8", number="3", pages="e34264", keywords="lung cancer screening", keywords="communication", keywords="recommendation", keywords="lung cancer", keywords="cancer", keywords="cross-sectional study", keywords="cancer screening", keywords="screening program", keywords="screening", abstract="Background: Lung cancer is the leading cause of cancer death worldwide. The US Preventive Services Task Force (USPSTF) updated recommendations for lung cancer screening in 2021, adjusting the age of screening to 50 years (from 55 years) and reducing the number of pack-years used to estimate total firsthand cigarette smoke exposure to 20 (from 30). With many individuals using the internet to find health care information, it is important to understand what information is available for individuals contemplating lung cancer screening. Objective: This study aimed to assess the eligibility criteria and information available on lung cancer screening program websites for both health professionals and potential screening participants. Methods: A descriptive cross-sectional analysis of 151 lung cancer screening program websites of academic (n=76) and community medical centers (n=75) in the United States with information for health professionals and potential screening participants was conducted in March 2021. Presentation of eligibility criteria for potential screening participants and presence of information available specific to health professionals about lung cancer screening were the primary outcomes. Secondary outcomes included presentation of information about cost and smoking cessation, inclusion of an online risk assessment tool, mention of any clinical guidelines, and use of multimedia to present information. Results: Eligibility criteria for lung cancer screening was included in nearly all 151 websites (n=142, 94\%), as well as age range (n=139, 92.1\%) and smoking history (n=141, 93.4\%). Age was only consistent with the latest recommendations in 14.5\% (n=22) of websites, and no websites had updated smoking history. Half the websites (n=76, 50.3\%) mentioned screening costs as related to the type of insurance held. A total of 23 (15.2\%) websites featured an online assessment tool to determine eligibility. The same proportion (n=23, 15.2\%) hosted information specifically for health professionals. In total, 44 (29.1\%) websites referred to smoking cessation, and 46 (30.5\%) websites used multimedia to present information, such as short videos or podcasts. Conclusions: Most websites of US lung cancer screening programs provide information about eligibility criteria, but this is not consistent and has not been updated across all websites following the latest USPSTF recommendations. Online resources require updating to present standardized information that is accessible for all. ", doi="10.2196/34264", url="https://cancer.jmir.org/2022/3/e34264", url="http://www.ncbi.nlm.nih.gov/pubmed/36040773" } @Article{info:doi/10.2196/36244, author="Herbert, S. Amber and Hassan, Naeemul and Malik, D. Rena and Loeb, Stacy and Myrie, Akya", title="Exploring Urological Malignancies on Pinterest: Content Analysis", journal="JMIR Cancer", year="2022", month="Aug", day="22", volume="8", number="3", pages="e36244", keywords="bladder cancer", keywords="Pinterest", keywords="prostate cancer", keywords="kidney cancer", keywords="testicular cancer", keywords="urological cancer", keywords="misinformation", keywords="genitourinary", keywords="malignancy", keywords="oncology", keywords="content", keywords="information", keywords="social media", keywords="accuracy", keywords="quality", abstract="Background: Pinterest is a visually oriented social media platform with over 250 million monthly users. Previous studies have found misinformative content on genitourinary malignancies to be broadly disseminated on YouTube; however, no study has assessed the quality of this content on Pinterest. Objective: Our objective was to evaluate the quality, understandability, and actionability of genitourinary malignancy content on Pinterest. Methods: We examined 540 Pinterest posts or pins, using the following search terms: ``bladder cancer,'' ``kidney cancer,'' ``prostate cancer,'' and ``testicular cancer.'' The pins were limited to English language and topic-specific content, resulting in the following exclusions: bladder (n=88), kidney (n=4), prostate (n=79), and testicular cancer (n=10), leaving 359 pins as the final analytic sample. Pinterest pins were classified based on publisher and perceived race or ethnicity. Content was assessed using 2 validated grading systems: DISCERN quality criteria and the Patient Education Materials Assessment Tool. The presence of misinformation was evaluated using a published Likert scale ranging from 1=none to 5=high. Results: Overall, 359 pins with a total of 8507 repins were evaluated. The primary publisher of genitourinary malignancy pins were health and wellness groups (n=162, 45\%). Across all genitourinary malignancy pins with people, only 3\% (n=7) were perceived as Black. Additionally, Asian (n=2, 1\%) and Latinx (n=1, 0.5\%) individuals were underrepresented in all pins. Nearly 75\% (n=298) of the pins had moderate- to poor-quality information. Misinformative content was apparent in 4\%-26\% of all genitourinary cancer pins. Understandability and actionability were poor in 55\% (n=198) and 100\% (n=359) of the pins, respectively. Conclusions: On Pinterest, the majority of the urological oncology patient-centric content is of low quality and lacks diversity. This widely used, yet unregulated platform has the ability to influence consumers' health knowledge and decision-making. Ultimately, this can lead to consumers making suboptimal medical decisions. Moreover, our findings demonstrate underrepresentation across many racial and ethnic groups. Efforts should be made to ensure the dissemination of diverse, high-quality, and accurate health care information to the millions of users on Pinterest and other social media platforms. ", doi="10.2196/36244", url="https://cancer.jmir.org/2022/3/e36244", url="http://www.ncbi.nlm.nih.gov/pubmed/35994318" } @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/10.2196/35324, 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/10.2196/38917, author="Griffin-Mathieu, Gabrielle and Haward, Ben and Tatar, Ovidiu and Zhu, Patricia and Perez, Samara and Shapiro, K. Gilla and McBride, Emily and Thompson, L. Erika and Smith, W. Laurie and Lofters, K. Aisha and Daley, M. Ellen and Guichon, R. Juliet and Waller, Jo and Steben, Marc and Decker, M. Kathleen and Mayrand, Marie-Helene and Brotherton, L. Julia M. and Ogilvie, S. Gina and Zimet, D. Gregory and Norris, Teresa and Rosberger, Zeev", title="Ensuring a Successful Transition From Cytology to Human Papillomavirus--Based Primary Cervical Cancer Screening in Canada by Investigating the Psychosocial Correlates of Women's Intentions: Protocol for an Observational Study", journal="JMIR Res Protoc", year="2022", month="Jun", day="16", volume="11", number="6", pages="e38917", keywords="human papillomavirus", keywords="HPV-based primary screening", keywords="cervical cancer", keywords="cervical cancer screening", keywords="cancer prevention", keywords="knowledge", keywords="attitudes and beliefs", keywords="preferences", keywords="HPV test acceptability", keywords="HPV self-sampling", keywords="Pap testing", keywords="cytology", keywords="mobile phone", abstract="Background: The human papillomavirus (HPV) test has emerged as a significant improvement over cytology for primary cervical cancer screening. In Canada, provinces and territories are moving toward implementing HPV testing in cervical cancer screening programs. Although an abundance of research exists on the benefits of HPV-based screening, there is a dearth of research examining women's understanding of HPV testing. In other countries, failure to adequately address women's concerns about changes has disrupted the implementation of HPV-based screening. Objective: The aims of the multipart study described in this paper are to develop psychometrically valid measures of cervical cancer screening--related knowledge, attitudes, and beliefs; to examine the feasibility of a questionnaire examining psychosocial factors related to HPV-based screening; and to investigate psychosocial correlates of women's intentions to participate in HPV-based screening. Methods: We conducted a web-based survey (study 1) of Canadian women to assess the acceptability and feasibility of a questionnaire, including the validation of scales examining cervical cancer knowledge, HPV testing knowledge, HPV testing attitudes and beliefs, and HPV test self-sampling attitudes and beliefs. Preferences for cervical cancer screening were assessed using the best-worst scaling methodology. A second web-based survey (study 2) will be administered to a national sample of Canadian women between June 2022 and July 2022 using the validated scales. Differences in the knowledge, attitudes, beliefs, and preferences of women who are currently either underscreened or adequately screened for cervical cancer will be examined through bivariate analyses. Multinomial logistic regression will be used to estimate the associations between psychosocial and sociodemographic factors and intentions to undergo HPV-based screening. Results: Between October 2021 and November 2021, a total of 1230 participants completed the questionnaire in study 1, and 1027 (83.49\%) responses were retained after data cleaning methods were applied. Feasibility was comparable with similar population-based surveys in terms of survey length, participant attrition, and the number of participants excluded after data cleaning. As of May 2022, analysis of study 1 is ongoing, and results are expected to be published in the summer of 2022. Data collection is expected to begin for study 2 in the summer of 2022. Results are expected to be published between late 2022 and early 2023. Conclusions: Findings will provide direction for Canadian public health authorities to align guidelines to address women's concerns and optimize the acceptability and uptake of HPV-based primary screening. Validated scales can be used by other researchers to improve and standardize the measurement of psychosocial factors affecting HPV test acceptability. Study results will be disseminated through peer-reviewed journal articles; conference presentations; and direct communication with researchers, clinicians, policy makers, media, and specialty organizations. International Registered Report Identifier (IRRID): DERR1-10.2196/38917 ", doi="10.2196/38917", url="https://www.researchprotocols.org/2022/6/e38917", url="http://www.ncbi.nlm.nih.gov/pubmed/35708742" } @Article{info:doi/10.2196/35020, author="Ullah, Shahid and Ullah, Farhan and Rahman, Wajeeha and Karras, A. Dimitrios and Ullah, Anees and Ahmad, Gulzar and Ijaz, Muhammad and Gao, Tianshun", title="The Cancer Research Database (CRDB): Integrated Platform to Gain Statistical Insight Into the Correlation Between Cancer and COVID-19", journal="JMIR Cancer", year="2022", month="Jun", day="10", volume="8", number="2", pages="e35020", keywords="cancer database", keywords="COVID-19", keywords="CRDB", keywords="genomics", keywords="PHP", keywords="cancer and COVID-19", keywords="cancer statistics", keywords="cancer research", keywords="health database", keywords="research platform", abstract="Background: The advancement of cancer research has been facilitated through freely available cancer literature, databases, and tools. The age of genomics and big data has given rise to the need for cooperation and data sharing in order to make efficient use of this new information in the COVID-19 pandemic. Although there are many databases for cancer research, their access is not easy owing to different ways of processing and managing the data. There is an absence of a unified platform to manage all of them in a transparent and more comprehensible way. Objective: In this study, an improved integrated cancer research database and platform is provided to facilitate a deeper statistical insight into the correlation between cancer and the COVID-19 pandemic, unifying the collection of almost all previous published cancer databases and defining a model web database for cancer research, and scoring databases on the basis of the variety types of cancer, sample size, completeness of omics results, and user interface. Methods: Databases examined and integrated include the Data Portal database, Genomic database, Proteomic database, Expression database, Gene database, and Mutation database; and it is expected that this launch will sort, save, advance the understanding and encourage the use of these resources in the cancer research environment. Results: To make it easy to search valuable information, 85 cancer databases are provided in the form of a table, and a database of databases named the Cancer Research Database (CRDB) has been built and presented herein. Furthermore, the CRDB has been herein equipped with unique navigation tools in order to be explored by three methods; that is, any single database can be browsed by typing the name in the given search bar, while all categories can be browsed by clicking on the name of the category or image expression icon, thus serving as a facility that could provide all the category databases on a single click. Conclusions: The computational platform (PHP, HTML, CSS, and MySQL) used to build CRDB for the cancer scientific community can be freely investigated and browsed on the internet and is planned to be updated in a timely manner. In addition, based on the proposed platform, the status and diagnoses statistics of cancer during the COVID-19 pandemic have been thoroughly investigated herein using CRDB, thus providing an easy-to-manage, understandable framework that mines knowledge for future researchers. ", doi="10.2196/35020", url="https://cancer.jmir.org/2022/2/e35020", url="http://www.ncbi.nlm.nih.gov/pubmed/35430561" } @Article{info:doi/10.2196/33594, author="Gelgoot, Noah Eden and Kruglova, Katya and Chan, Peter and Lo, Kirk and Rosberger, Zeev and Chown, Philippa and Kazdan, Jordana and O'Connell, Laura Siobhan Bernadette and Zelkowitz, Phyllis", title="Evaluation of a Mobile Health App Offering Fertility Information to Male Patients With Cancer: Usability Study", journal="JMIR Cancer", year="2022", month="May", day="4", volume="8", number="2", pages="e33594", keywords="mobile app", keywords="eHealth", keywords="male", keywords="cancer", keywords="infertility", keywords="fertility preservation", keywords="psycho-oncology", abstract="Background: Cancer and its treatment can adversely affect male fertility. Although sperm banking is an effective fertility preservation method, there is an unmet need for information and support surrounding these issues. Objective: This usability study evaluates a mobile health app providing male patients with cancer with credible information about the impact of cancer and its treatment on fertility and fertility preservation. Methods: Participants were recruited by a market research firm. Eligibility criteria were men who were 18-45 years of age, identified as male, diagnosed with new or recurring cancer within 1 year, not in fertility treatment, able to read and write in English or French, and had internet access. App usage was tracked for 2 weeks. After app use, participants provided qualitative feedback about their experiences using the app as well as quantitative data regarding their sperm banking decisions, perceived change in fertility knowledge, evaluation of the app's information on the Information Assessment Method, and the app's quality on the user version of the Mobile App Rating Scale. Results: The sample included 40 men aged 27-45 years. Approximately 68\% (27/40) indicated that no one had previously spoken to them about the impact of cancer on fertility, and 85\% (34/40) had not received information on fertility preservation. Approximately 83\% (33/40) found the app's information relevant, and 85\% (34/40) said that it increased their fertility knowledge. Approximately 23\% (9/40) made a decision about sperm banking after using the app. Participants rated the app's quality highly, with mean scores (out of 5) of 4.14 for information, 4.06 for functionality, 3.84 for aesthetics, and 3.63 for engagement. Conclusions: The app proved to be useful for male patients with cancer, suggesting that mobile health resources could be beneficial to incorporate into clinical care to enable shared decision-making about fertility. ", doi="10.2196/33594", url="https://cancer.jmir.org/2022/2/e33594", url="http://www.ncbi.nlm.nih.gov/pubmed/35507408" } @Article{info:doi/10.2196/25005, author="Gulbrandsen, Robert Trevor and Skalitzky, Kate Mary and Shamrock, Gregory Alan and Gao, Burke and Hasan, Obada and Miller, James Benjamin", title="Web-Based Patient Educational Material on Osteosarcoma: Quantitative Assessment of Readability and Understandability", journal="JMIR Cancer", year="2022", month="Mar", day="24", volume="8", number="1", pages="e25005", keywords="osteosarcoma", keywords="patient education", keywords="health literacy", keywords="web-based health information", abstract="Background: Patients often turn to web-based resources following the diagnosis of osteosarcoma. To be fully understood by average American adults, the American Medical Association (AMA) and National Institutes of Health (NIH) recommend web-based health information to be written at a 6th grade level or lower. Previous analyses of osteosarcoma resources have not measured whether text is written such that readers can process key information (understandability) or identify available actions to take (actionability). The Patient Education Materials Assessment Tool (PEMAT) is a validated measurement of understandability and actionability. Objective: The purpose of this study was to evaluate web-based osteosarcoma resources using measures of readability, understandability, and actionability. Methods: Using the search term ``osteosarcoma,'' two independent Google searches were performed on March 7, 2020 (by AGS), and March 11, 2020 (by TRG). The top 50 results were collected. Websites were included if they were directed at providing patient education on osteosarcoma. Readability was quantified using validated algorithms: Flesh-Kincaid Grade Ease (FKGE), Flesch-Kincaid Grade-Level (FKGL). A higher FKGE score indicates that the material is easier to read. All other readability scores represent the US school grade level. Two independent PEMAT assessments were performed with independent scores assigned for both understandability and actionability. A PEMAT score of 70\% or below is considered poorly understandable or poorly actionable. Statistical significance was defined as P?.05. Results: Two searches yielded 53 unique websites, of which 37 (70\%) met the inclusion criteria. The mean FKGE and FKGL scores were 40.8 (SD 13.6) and 12.0 (SD 2.4), respectively. No website scored within the acceptable NIH or AHA recommended reading level. Only 4 (11\%) and 1 (3\%) website met the acceptable understandability and actionability threshold. Both understandability and actionability were positively correlated with FKGE ($\rho$=0.55, P<.001; $\rho$=0.60, P<.001), but were otherwise not significantly associated with other readability scores. There were no associations between readability (P=.15), understandability (P=.20), or actionability (P=.31) scores and Google rank. Conclusions: Overall, web-based osteosarcoma patient educational materials scored poorly with respect to readability, understandability, and actionability. None of the web-based resources scored at the recommended reading level. Only 4 achieved the appropriate score to be considered understandable by the general public. Authors of patient resources should incorporate PEMAT and readability criteria to improve web-based resources to support patient understanding. ", doi="10.2196/25005", url="https://cancer.jmir.org/2022/1/e25005", url="http://www.ncbi.nlm.nih.gov/pubmed/35323117" } @Article{info:doi/10.2196/27890, author="Marziliano, Allison and Diefenbach, A. Michael and Hudson, V. Shawna and Tagai, K. Erin and Handorf, A. Elizabeth and Bator, Alicja and Miller, M. Suzanne", title="Demographic and Psychosocial Characteristics Associated With Use of a Prostate Cancer Survivorship Website: Implications From a Multisite Randomized Controlled Trial", journal="J Med Internet Res", year="2022", month="Mar", day="21", volume="24", number="3", pages="e27890", keywords="prostate cancer", keywords="cancer survivorship", keywords="web-based resource", keywords="monitoring style of coping", keywords="cancer", keywords="survivorship", keywords="eHealth", keywords="emotions", keywords="interpersonal", abstract="Background: Many prostate cancer (PC) survivors experience disease and treatment-related symptomatology in both the physical and psychosocial domains. Although the benefits and barriers to using web-based resources for cancer patients are well-documented, less research has focused on the personal characteristics important for efficient tailoring and targeting of information that are associated with usage. Objective: We used the Cognitive-Social Health Information Processing (C-SHIP) framework to guide our exploration of personal characteristics associated with use of PROGRESS, an informational PC survivorship website that addresses physical, emotional, interpersonal, and practical concerns relevant for PC survivors. Methods: PC survivors (N=217) were randomized to the intervention arm (PROGRESS) of a randomized controlled trial. Of those randomized to the intervention arm, 84 used PROGRESS, and 133 did not use PROGRESS. Multivariable analyses evaluated demographic and psychosocial characteristics (eg, style of coping, health literacy, self-efficacy, affective states of depression, anxiety, and fatigue) associated with website use. Results: A larger proportion of non-Hispanic White (68/160, 42.5\%), compared with non-Hispanic Black (9/40, 23\%), participants used PROGRESS (P<.001). Further, PROGRESS users were older in age (P<.001), had a monitoring style of coping (P=.01), and were less depressed (P=.004), anxious (P=.02), and fatigued (P<.001) than nonusers. Education, income, health literacy, blunting style of coping, self-efficacy, and treatment type (radiation therapy or surgery) were not significantly related to use. On multivariable analyses, race (OR 0.28, P<.001), age (OR 1.05, P<.001), monitoring style of coping (OR 1.27, P=.02), and overall mood (OR 0.98, P<.001) remained significant. Conclusions: A combination of monitoring and low levels of negative affect were associated with website use. Additionally, users were older, non-Hispanic White survivors. To ensure that important survivorship-relevant information reaches users, future efforts need to focus on enhancing patient engagement. Trial Registration: ClinicalTrials.gov NCT02224482; https://clinicaltrials.gov/ct2/show/NCT02224482 ", doi="10.2196/27890", url="https://www.jmir.org/2022/3/e27890", url="http://www.ncbi.nlm.nih.gov/pubmed/35311678" } @Article{info:doi/10.2196/31118, author="Vollmer Dahlke, Deborah and Yoshikawa, Aya and McAdam, Molly and Malatok, Sharyn and Gonzales, D. Elaine", title="An Analysis of Health Care Team Communication Needs Among Younger vs Older Breast Cancer Survivors: Web-Based Survey", journal="JMIR Cancer", year="2022", month="Mar", day="18", volume="8", number="1", pages="e31118", keywords="breast cancer", keywords="breast cancer survivorship", keywords="patient-physician communications", keywords="patient-centric communication", keywords="younger breast cancer patients", keywords="patient communication", abstract="Background: Prior studies indicate that the age of onset of breast cancer is an important element in considering communication between patients and the health care team. Younger women aged 45 and under diagnosed with breast cancer are often at a higher risk of being more vulnerable to psychosocial issues compared to older women aged 46 years and above. Few studies have examined age differences in patient perceptions of treatment-related discussion and communication during transition with their health care team. Objective: The aims of this survey were (1) to better understand breast cancer survivors' perspectives regarding communication with health care providers during treatment and during transition to posttreatment care; and (2) to determine the differences between younger women with breast cancer (?45 years of age) and older women (?46 years of age). It was hypothesized that (1) breast cancer survivors' psychosocial and finance-related communications with health care providers may lack effectiveness; (2) younger women experience greater needs for patient-centered communication with physicians and health care providers, especially about psychosocial care and transition to posttreatment care; and (3) younger breast cancer patients (?45 years of age) need more information on survivorship and follow-up care. Methods: An internet-based survey was conducted with 143 women in Central Texas with 35\% (n=50) aged 45 years or under and 65\% (n=93) aged 46 years and above. The Mann-Whitney U test was performed to assess differences in participants' perceptions about communication with health care providers by age group: younger (?45 years of age) and older (?46 years of age) women. Results: Statistically significant results pertained to rating health care team and patient discussions about transition from treatment to posttreatment using scores of 0 as ``no discussion'' and 100 as ``in-depth discussion.'' For the questions about management of posttreatment care, the overall mean score of the groups was 56.26 and that of the younger group was 43.96; the mean score of the older group was 61.96 (P=.02). For the question about the timing of follow-up appointments, the overall mean score was 64.29; the mean score of the younger group was 54.44, and that of the older group was 68.88 (P=.05). All the group scores related to psychosocial and financial support discussions with health care providers were low, with a rollup average of only 30.02 out of 100, suggesting that this is an important area for improving patient-centered communication. Conclusions: For all patients, transition from treatment to posttreatment requires a greater level of engagement and communication with the health care team. It appears that younger patients aged ?45 years require more in-depth and personalized messaging to better understand their posttreatment care requirements. ", doi="10.2196/31118", url="https://cancer.jmir.org/2022/1/e31118", url="http://www.ncbi.nlm.nih.gov/pubmed/35302499" } @Article{info:doi/10.2196/29124, author="Hibler, A. Elizabeth and Fought, J. Angela and Kershaw, N. Kiarri and Molsberry, Rebecca and Nowakowski, Virginia and Lindner, Deborah", title="Novel Interactive Tool for Breast and Ovarian Cancer Risk Assessment (Bright Pink Assess Your Risk): Development and Usability Study", journal="J Med Internet Res", year="2022", month="Feb", day="24", volume="24", number="2", pages="e29124", keywords="breast cancer", keywords="ovarian cancer", keywords="risk assessment", keywords="genetic testing", abstract="Background: The lifetime risk of breast and ovarian cancer is significantly higher among women with genetic susceptibility or a strong family history. However, current risk assessment tools and clinical practices may identify only 10\% of asymptomatic carriers of susceptibility genes. Bright Pink developed the Assess Your Risk (AYR) tool to estimate breast and ovarian cancer risk through a user-friendly, informative web-based quiz for risk assessment at the population level. Objective: This study aims to present the AYR tool, describe AYR users, and present evidence that AYR works as expected by comparing classification using the AYR tool with gold standard genetic testing guidelines. Methods: The AYR is a recently developed population-level risk assessment tool that includes 26 questions based on the National Comprehensive Cancer Network (NCCN) guidelines and factors from other commonly used risk assessment tools. We included all women who completed the AYR between November 2018 and January 2019, with the exception of self-reported cancer or no knowledge of family history. We compared AYR classifications with those that were independently created using NCCN criteria using measures of validity and the McNemar test. Results: There were 143,657 AYR completions, and most participants were either at increased or average risk for breast cancer or ovarian cancer (137,315/143,657, 95.59\%). Using our estimates of increased and average risk as the gold standard, based on the NCCN guidelines, we estimated the sensitivity and specificity for the AYR algorithm--generated risk categories as 100\% and 89.9\%, respectively (P<.001). The specificity improved when we considered the additional questions asked by the AYR to define increased risk, which were not examined by the NCCN criteria. By race, ethnicity, and age group; we found that the lowest observed specificity was for the Asian race (85.9\%) and the 30 to 39 years age group (87.6\%) for the AYR-generated categories compared with the NCCN criteria. Conclusions: These results demonstrate that Bright Pink's AYR is an accurate tool for use by the general population to identify women at increased risk of breast and ovarian cancer. We plan to validate the tool longitudinally in future studies, including the impact of race, ethnicity, and age on breast and ovarian cancer risk assessment. ", doi="10.2196/29124", url="https://www.jmir.org/2022/2/e29124", url="http://www.ncbi.nlm.nih.gov/pubmed/35200148" } @Article{info:doi/10.2196/33550, author="Mendes-Santos, Cristina and Nunes, Francisco and Weiderpass, Elisabete and Santana, Rui and Andersson, Gerhard", title="Development and Evaluation of the Usefulness, Usability, and Feasibility of iNNOV Breast Cancer: Mixed Methods Study", journal="JMIR Cancer", year="2022", month="Feb", day="15", volume="8", number="1", pages="e33550", keywords="acceptance and commitment therapy", keywords="anxiety", keywords="breast cancer survivors", keywords="cognitive behavioral therapy", keywords="depression", keywords="digital mental health", keywords="e-mental health", keywords="user-centered design", keywords="internet interventions", keywords="usability", keywords="mobile phone", abstract="Background: Despite the efficacy of psychosocial interventions in minimizing psychosocial morbidity in breast cancer survivors (BCSs), intervention delivery across survivorship is limited by physical, organizational, and attitudinal barriers, which contribute to a mental health care treatment gap in cancer settings. Objective: The aim of this study is to develop iNNOV Breast Cancer (iNNOVBC), a guided, internet-delivered, individually tailored, acceptance and commitment therapy--influenced cognitive behavioral intervention program aiming to treat mild to moderate anxiety and depression in BCSs as well as to improve fatigue, insomnia, sexual dysfunction, and health-related quality of life in this group. This study also aims to evaluate the usefulness, usability, and preliminary feasibility of iNNOVBC. Methods: iNNOVBC was developed using a user-centered design approach involving its primary and secondary end users, that is, BCSs (11/24, 46\%) and mental health professionals (13/24, 54\%). We used mixed methods, namely in-depth semistructured interviews, laboratory-based usability tests, short-term field trials, and surveys, to assess iNNOVBC's usefulness, usability, and preliminary feasibility among these target users. Descriptive statistics were used to characterize the study sample, evaluate performance data, and assess survey responses. Qualitative data were recorded, transcribed verbatim, and thematically analyzed. Results: Overall, participants considered iNNOVBC highly useful, with most participants reporting on the pertinence of its scope, the digital format, the relevant content, and the appropriate features. However, various usability issues were identified, and participants suggested that the program should be refined by simplifying navigation paths, using a more dynamic color scheme, including more icons and images, displaying information in different formats and versions, and developing smartphone and tablet versions. In addition, participants suggested that tables should be converted into plain textboxes and data visualization dashboards should be included to facilitate the tracking of progress. The possibility of using iNNOVBC in a flexible manner, tailoring it according to BCSs' changing needs and along the cancer care continuum, was another suggestion that was identified. Conclusions: The study results suggest that iNNOVBC is considered useful by both BCSs and mental health professionals, configuring a promising point-of-need solution to bridge the psychological supportive care gap experienced by BCSs across the survivorship trajectory. We believe that our results may be applicable to other similar programs. However, to fulfill their full supportive role, such programs should be comprehensive, highly usable, and tailorable and must adopt a flexible yet integrated structure capable of evolving in accordance with survivors' changing needs and the cancer continuum. ", doi="10.2196/33550", url="https://cancer.jmir.org/2022/1/e33550", url="http://www.ncbi.nlm.nih.gov/pubmed/35166682" } @Article{info:doi/10.2196/31263, author="Zhang, Yan and Yi, Siqi and Trace, B. Ciaran and Williams-Brown, Yvette Marian", title="Understanding the Information Needs of Patients With Ovarian Cancer Regarding Genetic Testing to Inform Intervention Design: Interview Study", journal="JMIR Cancer", year="2022", month="Feb", day="8", volume="8", number="1", pages="e31263", keywords="patient information needs", keywords="consumer health informatics", keywords="ovarian cancer", keywords="genetic testing", keywords="genetic counseling", keywords="mobile phone", abstract="Background: Experts in gynecological cancer care recommend that all patients with invasive or high-grade ovarian cancer (OC) undergo genetic testing. However, even patients who intend to take or have taken genetic tests have many unaddressed information needs regarding genetic testing. Existing genetic counseling falls short of adequately addressing this challenge. Objective: This study aims to investigate the genetic testing--related information needs of patients with OC to inform the design of interactive technology-based interventions that can enhance communication of genetic testing information to patients. Methods: We interviewed 20 patients with OC who had taken genetic tests and gathered genetic testing--related messages from an active OC web-based community. The interview transcripts and web-based community messages were analyzed using the qualitative content analysis method. Results: Data analyses produced a comprehensive taxonomy of the genetic testing--related information needs of patients with OC, which included five major topic clusters: knowledge of genetic testing as a medical test, genetic testing process, genetic testing implications for patients, implications for family members, and medical terminology. Findings indicated that patients wanted to receive information that was relevant, understandable, concise, usable, appropriate, sympathetic, and available when needed. They also preferred various channels to receive information, including internet-based technologies, print, and conversations with health care providers. Conclusions: Patients with OC need a range of information to address the uncertainties and challenges that they encounter while taking genetic tests. Their preferences for channels to receive information vary widely. A multichannel information delivery solution that combines both provider-led and peer-to-peer education models is needed to supplement existing genetic counseling to effectively meet the genetic testing--related information needs of patients with OC. ", doi="10.2196/31263", url="https://cancer.jmir.org/2022/1/e31263", url="http://www.ncbi.nlm.nih.gov/pubmed/35133282" } @Article{info:doi/10.2196/29289, author="Ritchie, B. Jordon and Frey, J. Lewis and Lamy, Jean-Baptiste and Bellcross, Cecelia and Morrison, Heath and Schiffman, D. Joshua and Welch, M. Brandon", title="Automated Clinical Practice Guideline Recommendations for Hereditary Cancer Risk Using Chatbots and Ontologies: System Description", journal="JMIR Cancer", year="2022", month="Jan", day="31", volume="8", number="1", pages="e29289", keywords="service-oriented architecture", keywords="restful API", keywords="hereditary cancer", keywords="risk assessment", keywords="clinical practice guidelines", keywords="consumer health informatics", abstract="Background: Identifying patients at risk of hereditary cancer based on their family health history is a highly nuanced task. Frequently, patients at risk are not referred for genetic counseling as providers lack the time and training to collect and assess their family health history. Consequently, patients at risk do not receive genetic counseling and testing that they need to determine the preventive steps they should take to mitigate their risk. Objective: This study aims to automate clinical practice guideline recommendations for hereditary cancer risk based on patient family health history. Methods: We combined chatbots, web application programming interfaces, clinical practice guidelines, and ontologies into a web service--oriented system that can automate family health history collection and assessment. We used Owlready2 and Prot{\'e}g{\'e} to develop a lightweight, patient-centric clinical practice guideline domain ontology using hereditary cancer criteria from the American College of Medical Genetics and Genomics and the National Cancer Comprehensive Network. Results: The domain ontology has 758 classes, 20 object properties, 23 datatype properties, and 42 individuals and encompasses 44 cancers, 144 genes, and 113 clinical practice guideline criteria. So far, it has been used to assess >5000 family health history cases. We created 192 test cases to ensure concordance with clinical practice guidelines. The average test case completes in 4.5 (SD 1.9) seconds, the longest in 19.6 seconds, and the shortest in 2.9 seconds. Conclusions: Web service--enabled, chatbot-oriented family health history collection and ontology-driven clinical practice guideline criteria risk assessment is a simple and effective method for automating hereditary cancer risk screening. ", doi="10.2196/29289", url="https://cancer.jmir.org/2022/1/e29289", url="http://www.ncbi.nlm.nih.gov/pubmed/35099392" } @Article{info:doi/10.2196/27349, author="Passardi, Alessandro and Foca, Flavia and Caffo, Orazio and Tondini, Alberto Carlo and Zambelli, Alberto and Vespignani, Roberto and Bartolini, Giulia and Sullo, Giulio Francesco and Andreis, Daniele and Dianti, Marco and Eccher, Claudio and Piras, Maria Enrico and Forti, Stefano", title="A Remote Monitoring System to Optimize the Home Management of Oral Anticancer Therapies (ONCO-TreC): Prospective Training--Validation Trial", journal="J Med Internet Res", year="2022", month="Jan", day="26", volume="24", number="1", pages="e27349", keywords="adherence", keywords="oral anticancer drug", keywords="mHealth", keywords="ONCO-TreC", keywords="electronic diary", abstract="Background: A platform designed to support the home management of oral anticancer treatments and provide a secure web-based patient--health care professional communication modality, ONCO-TreC, was tested in 3 cancer centers in Italy. Objective: The overall aims of the trial are to customize the platform; assess the system's ability to facilitate the shared management of oral anticancer therapies by patients and health professionals; and evaluate system usability and acceptability by patients, caregivers, and health care professionals. Methods: Patients aged ?18 years who were candidates for oral anticancer treatment as monotherapy with an Eastern Cooperative Oncology Group performance status score of 0 to 1 and a sufficient level of familiarity with mobile devices were eligible. ONCO-TreC consisted of a mobile app for patients and a web-based dashboard for health care professionals. Adherence to treatment (pill count) and toxicities reported by patients through the app were compared with those reported by physicians in medical records. Usability and acceptability were evaluated using questionnaires. Results: A total of 40 patients were enrolled, 38 (95\%) of whom were evaluable for adherence to treatment. The ability of the system to measure adherence to treatment was high, with a concordance of 97.3\% (95\% CI 86.1\%-99.9\%) between the investigator and system pill count. Only 60\% (3/5) of grade 3, 54\% (13/24) of grade 2, and 19\% (7/36) of grade 1 adverse events reported by physicians in the case report forms were also reported in the app directly by patients. In total, 94\% (33/35) of patients had ?1 app launch each week, and the median number of daily accesses per patient was 2. Approximately 71\% (27/38) and 68\% (26/38) of patients used the app for messages and vital sign entering, respectively, at least once during the study period. Conclusions: ONCO-TreC is an important tool for measuring and monitoring adherence to oral anticancer drugs. System usability and acceptability were very high, whereas its reliability in registering toxicity could be improved. Trial Registration: ClinicalTrials.gov NCT02921724; https://www.clinicaltrials.gov/ct2/show/NCT02921724 ", doi="10.2196/27349", url="https://www.jmir.org/2022/1/e27349", url="http://www.ncbi.nlm.nih.gov/pubmed/35080505" } @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/10.2196/31576, author="Van Blarigan, L. Erin and Dhruva, Anand and Atreya, E. Chloe and Kenfield, A. Stacey and Chan, M. June and Milloy, Alexandra and Kim, Iris and Steiding, Paige and Laffan, Angela and Zhang, Li and Piawah, Sorbarikor and Fukuoka, Yoshimi and Miaskowski, Christine and Hecht, M. Frederick and Kim, Mi-Ok and Venook, P. Alan and Van Loon, Katherine", title="Feasibility and Acceptability of a Physical Activity Tracker and Text Messages to Promote Physical Activity During Chemotherapy for Colorectal Cancer: Pilot Randomized Controlled Trial (Smart Pace II)", journal="JMIR Cancer", year="2022", month="Jan", day="11", volume="8", number="1", pages="e31576", keywords="exercise", keywords="treatment", keywords="colon cancer", keywords="rectal cancer", keywords="digital health", keywords="wearables", keywords="SMS", abstract="Background: We conducted a pilot 2-arm randomized controlled trial to assess the feasibility of a digital health intervention to increase moderate-to-vigorous physical activity in patients with colorectal cancer (CRC) during chemotherapy. Objective: This study aimed to determine whether a digital health physical activity intervention is feasible and acceptable during chemotherapy for CRC. Methods: Potentially eligible patients with CRC expected to receive at least 12 weeks of chemotherapy were identified in person at the University of California, San Francisco, and on the web through advertising. Eligible patients were randomized 1:1 to a 12-week intervention (Fitbit Flex, automated SMS text messages) versus usual care. At 0 and 12 weeks, patients wore an Actigraph GT3X+ accelerometer for 7 days and completed surveys, body size measurements, and an optional 6-minute walk test. Participants could not be masked to their intervention arm, but people assessing the body size and 6-minute walk test outcomes were masked. The primary outcomes were adherence (eg, Fitbit wear and text response rate) and self-assessed acceptability of the intervention. The intervention would be considered feasible if we observed at least 80\% complete follow-up and 70\% adherence and satisfaction, a priori. Results: From 2018 to 2020, we screened 240 patients; 53.3\% (128/240) of patients were ineligible and 26.7\% (64/240) declined to participate. A total of 44 patients (44/240, 18\%) were randomized to the intervention (n=22) or control (n=22) groups. Of these, 57\% (25/44) were women; 68\% (30/44) identified as White and 25\% (11/44) identified as Asian American or Pacific Islander; and 77\% (34/44) had a 4-year college degree. The median age at enrollment was 54 years (IQR 45-62 years). Follow-up at 12 weeks was 91\% (40/44) complete. In the intervention arm, patients wore Fitbit devices on a median of 67 out of 84 (80\%) study days and responded to a median of 17 out of 27 (63\%) questions sent via SMS text message. Among 19 out of 22 (86\%) intervention patients who completed the feedback survey, 89\% (17/19) were satisfied with the Fitbit device; 63\% (12/19) were satisfied with the SMS text messages; 68\% (13/19) said the SMS text messages motivated them to exercise; 74\% (14/19) said the frequency of SMS text messages (1-3 days) was ideal; and 79\% (15/19) said that receiving SMS text messages in the morning and evening was ideal. Conclusions: This pilot study demonstrated that many people receiving chemotherapy for CRC are interested in participating in digital health physical activity interventions. Fitbit adherence was high; however, participants indicated a desire for more tailored SMS text message content. Studies with more socioeconomically diverse patients with CRC are required. Trial Registration: ClinicalTrials.gov NCT03524716; https://clinicaltrials.gov/ct2/show/NCT03524716 ", doi="10.2196/31576", url="https://cancer.jmir.org/2022/1/e31576", url="http://www.ncbi.nlm.nih.gov/pubmed/35014958" } @Article{info:doi/10.2196/18083, author="Ayyoubzadeh, Mohammad Seyed and Shirkhoda, Mohammad and R Niakan Kalhori, Sharareh and Mohammadzadeh, Niloofar and Zakerabasali, Somayyeh", title="A Smartphone Remote Monitoring App to Follow Up Colorectal Cancer Survivors: Requirement Analysis", journal="JMIR Cancer", year="2022", month="Jan", day="5", volume="8", number="1", pages="e18083", keywords="eHealth", keywords="app", keywords="colorectal cancer", keywords="survivors", keywords="requirements analysis", keywords="MoSCoW", abstract="Background: Colorectal cancer survivors face multiple challenges after discharge. eHealth may potentially support them by providing tools such as smartphone apps. They have lots of capabilities to exchange information and could be used for remote monitoring of these patients. Objective: In this study, we addressed the required features for apps designed to follow up colorectal cancer patients based on survivors' and clinical experts' views. Methods: A mixed methods study was conducted. Features of related apps were extracted through the literature; the features were categorized, and then, they were modified. A questionnaire was designed containing the features listed and prioritized based on the MoSCoW (Must have, Should have, Could have, Won't have) technique and an open question for each category. The link to the questionnaire was shared among clinical experts in Iran. The answers were analyzed using the content validity ratio (CVR), and based on the value of this measure, the minimum feature set of a monitoring app to follow up patients with colorectal cancer was addressed. In addition, a telephone interview with colorectal cancer survivors was conducted to collect their viewpoints regarding a remote monitoring system for colorectal cancer cases. Results: The questionnaire contained 10 sections evaluating 9 categories of features. The questionnaire was completed by 18 experts. The minimum set of features in the app was identified as patient information registration, sign and symptom monitoring, education, reminders, and patient evaluation (0.42 < CVR < 0.85). Features including physical activity, personalized advice, and social network did not achieve the minimum score (--0.11 < CVR < 0.39). We interviewed 9 colorectal cancer survivors. Information registration, sign and symptom monitoring, education, and personalized advice were the features with high priority from the survivors' perspectives. Scheduling, shopping, and financial support features were emphasized by survivors in the interview. Conclusions: The requirement set could be used to design an app for the targeted population or patients affected by other cancers. As the views from both survivors and clinical experts were considered in this study, the remote system may more adequately fulfill the need for follow-up of survivors. This eases the patients' and health care providers' communication and interaction. ", doi="10.2196/18083", url="https://cancer.jmir.org/2022/1/e18083", url="http://www.ncbi.nlm.nih.gov/pubmed/34989685" } @Article{info:doi/10.2196/31092, author="Fang, Su-Ying and Lin, Pin-Jun and Kuo, Yao-Lung", title="Long-Term Effectiveness of a Decision Support App (Pink Journey) for Women Considering Breast Reconstruction Surgery: Pilot Randomized Controlled Trial", journal="JMIR Mhealth Uhealth", year="2021", month="Dec", day="10", volume="9", number="12", pages="e31092", keywords="breast cancer", keywords="breast reconstruction surgery", keywords="decision aid", keywords="decision support", keywords="mHealth", keywords="app", keywords="women", abstract="Background: Various kinds of breast reconstruction (BR) options, including implants and autologous, and surgery techniques, including traditional and endoscope assisted, can be used to perform surgery. All options have their own advantages and disadvantages. Women decide on an option depending on the values and preferences they emphasize. Lacking knowledge about BR or having decision difficulties during the treatment decision process makes women experience more decision regret, psychological distress, and poor body image. Delivering decision support with a values clarification exercise using eHealth approaches would be beneficial for patient outcomes. Objective: This study aims to examine the effects of a decision support app on decision-making quality and psychological morbidity for women considering BR surgery. Methods: This randomized controlled trial included women who were over 20 years of age and were newly diagnosed with breast cancer and candidates for mastectomy. Women having an option for breast conservation were excluded. After being referred from the outpatient physician, the women provided consent and completed the baseline assessment. Women allocated to the control group (CG) received usual care and were provided with a pamphlet with information about types of surgery and the advantages and disadvantages of different surgery types. Women allocated to the intervention group (IG) were given the same pamphlet and guided to use the Pink Journey app to support their decision. Then they were also prompted to discuss the opinions with their significant others. Finally, the decision-making process of using the app was printed out for women that they could take home. Decision conflict, anxiety, and depression were measured at baseline. At 1 week after the intervention (T1) and at 1 month (T2), 8 months (T3), and 12 months (T4) after surgery, the women completed decision conflict, decision regret, anxiety, depression, and body image scales. An intention-to-treat analysis was performed. Results: From February 2018 to July 2019, 96 women were randomly assigned to the CG (n=48) or the IG (n=48). Results revealed that body image distress declined significantly for the IG but increased for the CG. The interaction of time and group also reached significance, indicating a significant decrease in body image distress from baseline in the IG compared with the CG after the 12th month (T4) follow-up ($\beta$=--2.25, standard error=1.01, P=.027). However, there was no significant difference in decision conflict (P=.21-.87), decision regret (P=.44-.55), anxiety (P=.26-.33), and depression (P=.20-.75), indicating that the decrease in these outcomes in the IG was not greater than those in the CG. Conclusions: Although we found no effect on decision conflict, decision regret, anxiety, and depression, a decision aid that combines surgery information and values clarification can help women reduce their body image distress. Trial Registration: ClinicalTrials.gov NCT04190992; https://clinicaltrials.gov/ct2/show/NCT04190992 ", doi="10.2196/31092", url="https://mhealth.jmir.org/2021/12/e31092", url="http://www.ncbi.nlm.nih.gov/pubmed/34890354" } @Article{info:doi/10.2196/31917, author="Wan, Wei Su and Chong, Seng Choon and Toh, Ee-Lin and Lim, Hoon Siew and Loi, TT Carol and Lew, Henry Yuen Foong and Chua, Heng Matthew Chin and Jee, Pei Xin and Liu, Guangyu and Zhu, Lixia and Pikkarainen, Minna and He, Hong-Gu", title="A Theory-Based, Multidisciplinary Approach to Cocreate a Patient-Centric Digital Solution to Enhance Perioperative Health Outcomes Among Colorectal Cancer Patients and Their Family Caregivers: Development and Evaluation Study", journal="J Med Internet Res", year="2021", month="Dec", day="7", volume="23", number="12", pages="e31917", keywords="colorectal cancer", keywords="digital solutions", keywords="mobile health", keywords="psychosocial", keywords="mHealth", keywords="smartphone app", keywords="mobile phone app", abstract="Background: Elective colorectal cancer (CRC) surgeries offer enhanced surgical outcomes but demand high self-efficacy in prehabilitation and competency in self-care and disease management postsurgery. Conventional strategies to meet perioperative needs have not been pragmatic, and there remains a pressing need for novel technologies that could improve health outcomes. Objective: The aim of this paper was to describe the development of a smartphone-based interactive CRC self-management enhancement psychosocial program (iCanManage) in order to improve health outcomes among patients who undergo elective CRC surgeries and their family caregivers. Methods: A multidisciplinary international team comprising physicians, specialist nurses, a psychologist, software engineers, academic researchers, cancer survivors, patient ambassadors, and ostomy care medical equipment suppliers was formed to facilitate the development of this patient-centric digital solution. The process occurred in several stages: (1) review of current practice through clinic visits and on-site observations; (2) review of literature and findings from preliminary studies; (3) content development grounded in an underpinning theory; (4) integration of support services; and (5) optimizing user experience through improving interface aesthetics and customization. In our study, 5 participants with CRC performed preliminary assessments on the quality of the developed solution using the 20-item user version of the Mobile App Rating Scale (uMARS), which had good psychometric properties. Results: Based on the collected uMARS data, the smartphone app was rated highly for functionality, aesthetics, information quality, and perceived impact, and moderately for engagement and subjective quality. Several limiting factors such as poor agility in the adoption of digital technology and low eHealth literacy were identified despite efforts to promote engagement and ensure ease of use of the mobile app. To overcome such barriers, additional app-training sessions, an instruction manual, and regular telephone calls will be incorporated into the iCanManage program during the trial period. Conclusions: This form of multidisciplinary collaboration is advantageous as it can potentially streamline existing care paths and allow the delivery of more holistic care to the CRC population during the perioperative period. Should the program be found to be effective and sustainable, hospitals adopting this digital solution may achieve better resource allocation and reduce overall health care costs in the long run. Trial Registration: ClinicalTrials.gov NCT04159363; https://clinicaltrials.gov/ct2/show/NCT04159363 ", doi="10.2196/31917", url="https://www.jmir.org/2021/12/e31917", url="http://www.ncbi.nlm.nih.gov/pubmed/34878991" } @Article{info:doi/10.2196/32609, author="Santos, D. Amanda and Caine, Vera and Robson, J. Paula and Watson, Linda and Easaw, C. Jacob and Petrovskaya, Olga", title="Oncology Patients' Experiences With Novel Electronic Patient Portals to Support Care and Treatment: Qualitative Study With Early Users and Nonusers of Portals in Alberta, Canada", journal="JMIR Cancer", year="2021", month="Nov", day="24", volume="7", number="4", pages="e32609", keywords="patient portal", keywords="MyChart", keywords="health information and communication technology", keywords="eHealth", keywords="personal health information", keywords="oncology", keywords="cancer care", keywords="Canada", keywords="qualitative", keywords="context of technology implementation", abstract="Background: With the current proliferation of clinical information technologies internationally, patient portals are increasingly being adopted in health care. Research, conducted mostly in the United States, shows that oncology patients have a keen interest in portals to gain access to and track comprehensive personal health information. In Canada, patient portals are relatively new and research into their use and effects is currently emerging. There is a need to understand oncology patients' experiences of using eHealth tools and to ground these experiences in local sociopolitical contexts of technology implementation, while seeking to devise strategies to enhance portal benefits. Objective: The purpose of this study was to explore the experiences of oncology patients and their family caregivers when using electronic patient portals to support their health care needs. We focused on how Alberta's unique, 2-portal context shapes experiences of early portal adopters and nonadopters, in anticipation of a province-wide rollout of a clinical information system in oncology facilities. Methods: This qualitative descriptive study employed individual semistructured interviews and demographic surveys with 11 participants. Interviews were audio-recorded and transcribed verbatim. Data were analyzed thematically. The study was approved by the University of Alberta Human Research Ethics Board. Results: Participants currently living with nonactive cancer discussed an online patient portal as one among many tools (including the internet, phone, videoconferencing, print-out reports) available to make sense of their diagnosis and treatment, maintain connections with health care providers, and engage with information. In the Fall of 2020, most participants had access to 1 of 2 of Alberta's patient portals and identified ways in which this portal was supportive (or not) of their ongoing health care needs. Four major themes, reflecting the participants' broader concerns within which the portal use was occurring, were generated from the data: (1) experiencing doubt and the desire for transparency; (2) seeking to become an informed and active member of the health care team; (3) encountering complexity; and (4) emphasizing the importance of the patient--provider relationship. Conclusions: Although people diagnosed with cancer and their family caregivers considered an online patient portal as beneficial, they identified several areas that limit how portals support their oncology care. Providers of health care portals are invited to recognize these limitations and work toward addressing them. ", doi="10.2196/32609", url="https://cancer.jmir.org/2021/4/e32609", url="http://www.ncbi.nlm.nih.gov/pubmed/34822338" } @Article{info:doi/10.2196/29447, author="Chavez-Yenter, Daniel and Kimball, E. Kadyn and Kohlmann, Wendy and Lorenz Chambers, Rachelle and Bradshaw, L. Richard and Espinel, F. Whitney and Flynn, Michael and Gammon, Amanda and Goldberg, Eric and Hagerty, J. Kelsi and Hess, Rachel and Kessler, Cecilia and Monahan, Rachel and Temares, Danielle and Tobik, Katie and Mann, M. Devin and Kawamoto, Kensaku and Del Fiol, Guilherme and Buys, S. Saundra and Ginsburg, Ophira and Kaphingst, A. Kimberly", title="Patient Interactions With an Automated Conversational Agent Delivering Pretest Genetics Education: Descriptive Study", journal="J Med Internet Res", year="2021", month="Nov", day="18", volume="23", number="11", pages="e29447", keywords="cancer", keywords="genetic testing", keywords="virtual conversational agent", keywords="user interaction", keywords="smartphone", keywords="mobile phone", abstract="Background: Cancer genetic testing to assess an individual's cancer risk and to enable genomics-informed cancer treatment has grown exponentially in the past decade. Because of this continued growth and a shortage of health care workers, there is a need for automated strategies that provide high-quality genetics services to patients to reduce the clinical demand for genetics providers. Conversational agents have shown promise in managing mental health, pain, and other chronic conditions and are increasingly being used in cancer genetic services. However, research on how patients interact with these agents to satisfy their information needs is limited. Objective: Our primary aim is to assess user interactions with a conversational agent for pretest genetics education. Methods: We conducted a feasibility study of user interactions with a conversational agent who delivers pretest genetics education to primary care patients without cancer who are eligible for cancer genetic evaluation. The conversational agent provided scripted content similar to that delivered in a pretest genetic counseling visit for cancer genetic testing. Outside of a core set of information delivered to all patients, users were able to navigate within the chat to request additional content in their areas of interest. An artificial intelligence--based preprogrammed library was also established to allow users to ask open-ended questions to the conversational agent. Transcripts of the interactions were recorded. Here, we describe the information selected, time spent to complete the chat, and use of the open-ended question feature. Descriptive statistics were used for quantitative measures, and thematic analyses were used for qualitative responses. Results: We invited 103 patients to participate, of which 88.3\% (91/103) were offered access to the conversational agent, 39\% (36/91) started the chat, and 32\% (30/91) completed the chat. Most users who completed the chat indicated that they wanted to continue with genetic testing (21/30, 70\%), few were unsure (9/30, 30\%), and no patient declined to move forward with testing. Those who decided to test spent an average of 10 (SD 2.57) minutes on the chat, selected an average of 1.87 (SD 1.2) additional pieces of information, and generally did not ask open-ended questions. Those who were unsure spent 4 more minutes on average (mean 14.1, SD 7.41; P=.03) on the chat, selected an average of 3.67 (SD 2.9) additional pieces of information, and asked at least one open-ended question. Conclusions: The pretest chat provided enough information for most patients to decide on cancer genetic testing, as indicated by the small number of open-ended questions. A subset of participants were still unsure about receiving genetic testing and may require additional education or interpersonal support before making a testing decision. Conversational agents have the potential to become a scalable alternative for pretest genetics education, reducing the clinical demand on genetics providers. ", doi="10.2196/29447", url="https://www.jmir.org/2021/11/e29447", url="http://www.ncbi.nlm.nih.gov/pubmed/34792472" } @Article{info:doi/10.2196/28393, author="Lei, Fang and Lee, Eunice", title="Cross-Cultural Modification Strategies for Instruments Measuring Health Beliefs About Cancer Screening: Systematic Review", journal="JMIR Cancer", year="2021", month="Nov", day="18", volume="7", number="4", pages="e28393", keywords="cancer screening", keywords="health beliefs", keywords="instrument modification", keywords="strategy", keywords="systematic review", abstract="Background: Modification is an important process by which to adapt an instrument to be used for another culture. However, it is not fully understood how best to modify an instrument to be used appropriately in another culture. Objective: This study aims to synthesize the modification strategies used in the cross-cultural adaptation process for instruments measuring health beliefs about cancer screening. Methods: A systematic review design was used for conducting this study. Keywords including constructs about instrument modification, health belief, and cancer screening were searched in the PubMed, Google Scholar, CINAHL, and PsycINFO databases. Bowling's checklist was used to evaluate methodological rigor of the included articles. Results were reported using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) approach with a narrative method. Results: A total of 1312 articles were initially identified in the databases. After removing duplications and assessing titles, abstracts, and texts of the articles, 18 studies met the inclusion criteria for the study. Based on Flaherty's cultural equivalence model, strategies used in the modification process included rephrasing items and response options to achieve semantic equivalence; changing subjects of items, changing wording of items, adding items, and deleting items to achieve content equivalence; adding subscales and items and deleting subscales and items to achieve criterion equivalence. Solutions used to resolve disagreements in the modification process included consultation with experts or literature search, following the majority, and consultation with the author who developed the scales. Conclusions: This study provides guidance for researchers who want to modify an instrument to be used in another culture. It can potentially give cross-cultural researchers insight into modification strategies and a better understanding of the modification process in cross-cultural instrument adaptation. More research could be done to help researchers better modify cross-cultural instruments to achieve cultural equivalence. ", doi="10.2196/28393", url="https://cancer.jmir.org/2021/4/e28393", url="http://www.ncbi.nlm.nih.gov/pubmed/34792474" } @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/10.2196/20964, author="Mallmann, A. Christoph and Domr{\"o}se, M. Christian and Schr{\"o}der, Lars and Engelhardt, David and Bach, Frederik and Rueckel, Helena and Abramian, Alina and Kaiser, Christina and Mustea, Alexander and Faridi, Andree and Malter, Wolfram and Mallmann, Peter and Rudlowski, Christian and Zivanovic, Oliver and Mallmann, R. Michael", title="Digital Technical and Informal Resources of Breast Cancer Patients From 2012 to 2020: Questionnaire-Based Longitudinal Trend Study", journal="JMIR Cancer", year="2021", month="Nov", day="18", volume="7", number="4", pages="e20964", keywords="digitalization", keywords="eHealth", keywords="breast cancer", keywords="internet", abstract="Background: Digitalization offers enormous potential in medicine. In the era of digitalization, the development of the use of digital, technical, and informal resources of breast cancer patients and factors influencing the degree of digitization of patients has been insufficiently researched. Objective: The aim of this study was to assess the development of the use of digital technical and informal resources in a well-defined patient cohort. Methods: A longitudinal study on 513 breast cancer patients from 2012 to 2020 was conducted using a questionnaire that included the main aspects of the degree of digitalization, including digital device availability and use, stationary and mobile internet access and use, and communication and information seeking regarding breast cancer diagnosis and treatment. Results: The majority of patients (421/513, 82.1\%) owned the technical resources to benefit from eHealth, used the internet to obtain information (292/509, 57.4\%), and were willing to use new eHealth solutions (379/426, 89\%). Two-thirds of the patients discussed information about their cancer on the internet with their doctor, one-third found additional treatment options on the internet, and 15.3\% (44/287) of the patients stated that this had changed their cancer therapy. The degree of digitization is increasing yet still significantly depends on 3 factors: (1) age (whereas 100\% [39/39] of the <59-year-old group used the internet in 2020, 92\% of the 60 to 69-year-old group [11/12] and only 47\% [6/13] of the >70-year-old group used the internet), (2) education (internet use significantly depended on education, as only 51.8\% [59/114] of patients with primary school education used the internet, but 82.4\% [126/153] with middle school education and 90.3\% [213/236] with high school education used the internet; P<.001), and (3) household size (67.7\% [111/164] of patients living alone used the internet, whereas 84.7\% [287/339] of patients living in a house with ?2 people used the internet; P<.001). Conclusions: To implement digital solutions in health care, knowledge of the composition and degree of the use of digital technical and informal resources of the patient group for which the respective solution is developed is crucial for success. Trial Registration: German Register of Clinical Studies DRKS00012364; https://www.drks.de/drks\_web/navigate.do?navigationId=trial.HTML\&TRIAL\_ID=DRKS00012364 ", doi="10.2196/20964", url="https://cancer.jmir.org/2021/4/e20964", url="http://www.ncbi.nlm.nih.gov/pubmed/34792468" } @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/10.2196/32005, 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/10.2196/31616, author="Yung, Alan and Kay, Judy and Beale, Philip and Gibson, A. Kathryn and Shaw, Tim", title="Computer-Based Decision Tools for Shared Therapeutic Decision-making in Oncology: Systematic Review", journal="JMIR Cancer", year="2021", month="Oct", day="26", volume="7", number="4", pages="e31616", keywords="oncology", keywords="cancer", keywords="computer-based", keywords="decision support", keywords="decision-making", keywords="system", keywords="tool", keywords="machine learning", keywords="artificial intelligence", keywords="uncertainty", keywords="shared decision-making", abstract="Background: Therapeutic decision-making in oncology is a complex process because physicians must consider many forms of medical data and protocols. Another challenge for physicians is to clearly communicate their decision-making process to patients to ensure informed consent. Computer-based decision tools have the potential to play a valuable role in supporting this process. Objective: This systematic review aims to investigate the extent to which computer-based decision tools have been successfully adopted in oncology consultations to improve patient-physician joint therapeutic decision-making. Methods: This review was conducted in accordance with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) 2020 checklist and guidelines. A literature search was conducted on February 4, 2021, across the Cochrane Database of Systematic Reviews (from 2005 to January 28, 2021), the Cochrane Central Register of Controlled Trials (December 2020), MEDLINE (from 1946 to February 4, 2021), Embase (from 1947 to February 4, 2021), Web of Science (from 1900 to 2021), Scopus (from 1969 to 2021), and PubMed (from 1991 to 2021). We used a snowball approach to identify additional studies by searching the reference lists of the studies included for full-text review. Additional supplementary searches of relevant journals and gray literature websites were conducted. The reviewers screened the articles eligible for review for quality and inclusion before data extraction. Results: There are relatively few studies looking at the use of computer-based decision tools in oncology consultations. Of the 4431 unique articles obtained from the searches, only 10 (0.22\%) satisfied the selection criteria. From the 10 selected studies, 8 computer-based decision tools were identified. Of the 10 studies, 6 (60\%) were conducted in the United States. Communication and information-sharing were improved between physicians and patients. However, physicians did not change their habits to take advantage of computer-assisted decision-making tools or the information they provide. On average, the use of these computer-based decision tools added approximately 5 minutes to the total length of consultations. In addition, some physicians felt that the technology increased patients' anxiety. Conclusions: Of the 10 selected studies, 6 (60\%) demonstrated positive outcomes, 1 (10\%) showed negative results, and 3 (30\%) were neutral. Adoption of computer-based decision tools during oncology consultations continues to be low. This review shows that information-sharing and communication between physicians and patients can be improved with the assistance of technology. However, the lack of integration with electronic health records is a barrier. This review provides key requirements for enhancing the chance of success of future computer-based decision tools. However, it does not show the effects of health care policies, regulations, or business administration on physicians' propensity to adopt the technology. Nevertheless, it is important that future research address the influence of these higher-level factors as well. Trial Registration: PROSPERO International Prospective Register of Systematic Reviews CRD42021226087; https://www.crd.york.ac.uk/prospero/display\_record.php?ID=CRD42021226087 ", doi="10.2196/31616", url="https://cancer.jmir.org/2021/4/e31616", url="http://www.ncbi.nlm.nih.gov/pubmed/34544680" } @Article{info:doi/10.2196/24865, author="Cruz, da Fl{\'a}via Oliveira de Almeida Marques and Faria, Tostes Edison and Ghobad, Cardelino Pabblo and Alves, Mano Leandro Yukio and Reis, dos Paula Elaine Diniz", title="A Mobile App (AMOR Mama) for Women With Breast Cancer Undergoing Radiation Therapy: Functionality and Usability Study", journal="J Med Internet Res", year="2021", month="Oct", day="13", volume="23", number="10", pages="e24865", keywords="mobile applications", keywords="health education", keywords="nursing care", keywords="oncology nursing", keywords="educational technology", keywords="breast neoplasms", keywords="radiation therapy", abstract="Background: Mobile apps targeting women with breast cancer can facilitate access to information, improve well-being, and record reports of treatment-related symptoms. However, it is important to confirm the benefits of these apps before they are used as a tool in clinical care. Objective: The aim of this study was to evaluate the functionality and the usability of a mobile app created to guide and monitor patients with breast cancer undergoing radiation therapy. Methods: The evaluation process of the mobile app was performed in 2 steps with 8 professionals, including nurses, physician, medical physicists, and communication networks engineer. The first step was the focus group, which allowed obtaining suggestions proposed by the participants regarding the improvement of the mobile app. The second step was the individual filling in of an evaluation tool to obtain objective measures about the mobile app. A minimum concordance index of 80\% was considered to ensure the adequacy of the material. Results: After the mobile app was evaluated by 8 professionals, only 1 item of the evaluation tool, that is, concerning the potentiality of the app to be used by users of different educational levels, obtained a concordance index <80\%. Conclusions: The mobile app titled ``AMOR Mama'' was considered suitable, which suggests its contribution to an educational health technology to guide and monitor patients with breast cancer undergoing radiation therapy. More studies with this target population should be carried out to assess the performance and quality of the mobile app during its use. ", doi="10.2196/24865", url="https://www.jmir.org/2021/10/e24865", url="http://www.ncbi.nlm.nih.gov/pubmed/34643531" } @Article{info:doi/10.2196/28355, author="Suzuki, Yukio and Sukegawa, Akiko and Ueda, Yutaka and Sekine, Masayuki and Enomoto, Takayuki and Miyagi, Etsuko", title="Effect of a Brief Web-Based Educational Intervention on Willingness to Consider Human Papillomavirus Vaccination for Children in Japan: Randomized Controlled Trial", journal="J Med Internet Res", year="2021", month="Sep", day="27", volume="23", number="9", pages="e28355", keywords="human papillomavirus", keywords="human papillomavirus vaccination", keywords="behavioral insights", keywords="behavioral change", keywords="web-based randomized controlled trial", abstract="Background: The human papillomavirus (HPV) vaccination rate in Japan has fallen to nearly zero since the suspension of governmental proactive recommendations in 2013, owing to the development of purported adverse events. Objective: This study aimed to evaluate the effects of a brief web-based educational intervention using the theory of behavioral insights on the willingness of adults to consider the HPV vaccine for their daughters and sons. Methods: We recruited 1660 participants aged 20 years or older in March 2018 via a webpage and provided them with a 10-item questionnaire related to the following aspects: awareness regarding HPV infection and vaccination, willingness for immunization, and actions for prevention. We randomly stratified participants based on sex and age with or without a brief educational intervention involving scientific information presented in an easy-to-read format. Results: Only 484 (29.2\%) of the respondents were aware of the benefits of HPV vaccination. Although only 352 (21.2\%) of the respondents displayed a willingness for immunization of their daughters, there were 40 (4.8\%) more respondents in the intervention group with this willingness (adjusted odds ratio [aOR] 1.32, 95\% CI 1.04-1.69). In a subanalysis, the willingness toward vaccination for daughters in men was significantly higher in the intervention group (aOR 1.46, 95\% CI 1.05-2.02). However, such a difference was not observed among women (aOR 1.20, 95\% CI 0.83-1.73). Conclusions: This study suggests that a brief web-based educational intervention increases the willingness of adults to consider the HPV vaccine for their children, especially among men. Thus, providing adequate information to men may be a useful strategy to improve the currently low rates of HPV vaccination. Trial Registration: UMIN Clinical Trials Registry UMIN000049745 (UMIN-CTR); https://upload.umin.ac.jp/cgi-open-bin/ctr\_e/ctr\_view.cgi?recptno=R000049745 ", doi="10.2196/28355", url="https://www.jmir.org/2021/9/e28355", url="http://www.ncbi.nlm.nih.gov/pubmed/34569941" } @Article{info:doi/10.2196/26545, author="Weinstein, S. Ronald and Holcomb, J. Michael and Mo, Julia and Yonsetto, Peter and Bojorquez, Octavio and Grant, Marcia and Wendel, S. Christopher and Tallman, J. Nancy and Ercolano, Elizabeth and Cidav, Zuleyha and Hornbrook, C. Mark and Sun, Virginia and McCorkle, Ruth and Krouse, S. Robert", title="An Ostomy Self-management Telehealth Intervention for Cancer Survivors: Technology-Related Findings From a Randomized Controlled Trial", journal="J Med Internet Res", year="2021", month="Sep", day="27", volume="23", number="9", pages="e26545", keywords="telehealth", keywords="telemedicine", keywords="cloud computing", keywords="ostomy", keywords="cancer survivors", keywords="family caregivers", keywords="self-management", keywords="patient education", keywords="videoconferencing", keywords="mobile phone", abstract="Background: An Ostomy Self-management Telehealth (OSMT) intervention by nurse educators and peer ostomates can equip new ostomates with critical knowledge regarding ostomy care. A telehealth technology assessment aim was to measure telehealth engineer support requirements for telehealth technology--related (TTR) incidents encountered during OSMT intervention sessions held via a secure cloud-based videoconferencing service, Zoom for Healthcare. Objective: This paper examines technology-related challenges, issues, and opportunities encountered in the use of telehealth in a randomized controlled trial intervention for cancer survivors living with a permanent ostomy. Methods: The Arizona Telemedicine Program provided telehealth engineering support for 105 OSMT sessions, scheduled for 90 to 120 minutes each, over a 2-year period. The OSMT groups included up to 15 participants, comprising 4-6 ostomates, 4-6 peer ostomates, 2 nurse educators, and 1 telehealth engineer. OSMT-session TTR incidents were recorded contemporaneously in detailed notes by the research staff. TTR incidents were categorized and tallied. Results: A total of 97.1\% (102/105) OSMT sessions were completed as scheduled. In total, 3 OSMT sessions were not held owing to non--technology-related reasons. Of the 93 ostomates who participated in OSMT sessions, 80 (86\%) completed their OSMT curriculum. TTR incidents occurred in 36.3\% (37/102) of the completed sessions with varying disruptive impacts. No sessions were canceled or rescheduled because of TTR incidents. Disruptions from TTR incidents were minimized by following the TTR incident prevention and incident response plans. Conclusions: Telehealth videoconferencing technology can enable ostomates to participate in ostomy self-management education by incorporating dedicated telehealth engineering support. Potentially, OSMT greatly expands the availability of ostomy self-management education for new ostomates. Trial Registration: ClinicalTrials.gov NCT02974634; https://clinicaltrials.gov/ct2/show/NCT02974634 ", doi="10.2196/26545", url="https://www.jmir.org/2021/9/e26545", url="http://www.ncbi.nlm.nih.gov/pubmed/34086595" } @Article{info:doi/10.2196/27063, author="Loeb, Stacy and Massey, Philip and Leader, E. Amy and Thakker, Sameer and Falge, Emily and Taneja, Sabina and Byrne, Nataliya and Rose, Meredith and Joy, Matthew and Walter, Dawn and Katz, S. Matthew and Wong, L. Risa and Selvan, Preethi and Keith, W. Scott and Giri, N. Veda", title="Gaps in Public Awareness About BRCA and Genetic Testing in Prostate Cancer: Social Media Landscape Analysis", journal="JMIR Cancer", year="2021", month="Sep", day="20", volume="7", number="3", pages="e27063", keywords="genetic testing", keywords="BRCA", keywords="prostate cancer", keywords="breast cancer", keywords="social media", keywords="infodemiology", abstract="Background: Genetic testing, particularly for BRCA1/2, is increasingly important in prostate cancer (PCa) care, with impact on PCa management and hereditary cancer risk. However, the extent of public awareness and online discourse on social media is unknown, and presents opportunities to identify gaps and enhance population awareness and uptake of advances in PCa precision medicine. Objective: The objective of this study was to characterize activity and engagement across multiple social media platforms (Twitter, Facebook, and YouTube) regarding BRCA and genetic testing for PCa compared with breast cancer, which has a long history of public awareness, advocacy, and prominent social media presence. Methods: The Symplur Signals online analytics platform was used to obtain metrics for tweets about (1) \#BRCA and \#breastcancer, (2) \#BRCA and \#prostatecancer, (3) \#genetictesting and \#breastcancer, and (4) \#genetictesting and \#prostatecancer from 2016 to 2020. We examined the total number of tweets, users, and reach for each hashtag, and performed content analysis for a subset of tweets. Facebook and YouTube were queried using analogous search terms, and engagement metrics were calculated. Results: During a 5-year period, there were 10,005 tweets for \#BRCA and \#breastcancer, versus 1008 tweets about \#BRCA and \#prostatecancer. There were also more tweets about \#genetictesting and \#breastcancer (n=1748), compared with \#genetic testing and \#prostatecancer (n=328). Tweets about genetic testing (12,921,954) and BRCA (75,724,795) in breast cancer also had substantially greater reach than those about PCa (1,463,777 and 4,849,905, respectively). Facebook groups and pages regarding PCa and BRCA/genetic testing had fewer average members, new members, and new posts, as well as fewer likes and followers, compared with breast cancer. Facebook videos had more engagement than YouTube videos across both PCa and breast cancer content. Conclusions: There is substantially less social media engagement about BRCA and genetic testing in PCa compared with breast cancer. This landscape analysis provides insights into strategies for leveraging social media platforms to increase public awareness about PCa germline testing, including use of Facebook to share video content and Twitter for discussions with health professionals. ", doi="10.2196/27063", url="https://cancer.jmir.org/2021/3/e27063", url="http://www.ncbi.nlm.nih.gov/pubmed/34542414" } @Article{info:doi/10.2196/28852, author="Ester, Manuel and Eisele, Maximilian and Wurz, Amanda and McDonough, H. Meghan and McNeely, Margaret and Culos-Reed, Nicole S.", title="Current Evidence and Directions for Future Research in eHealth Physical Activity Interventions for Adults Affected by Cancer: Systematic Review", journal="JMIR Cancer", year="2021", month="Sep", day="20", volume="7", number="3", pages="e28852", keywords="eHealth", keywords="electronic health", keywords="mHealth", keywords="cancer", keywords="oncology", keywords="physical activity", keywords="exercise", keywords="systematic review", keywords="mobile phone", abstract="Background: Physical activity (PA) interventions can increase PA and improve well-being among adults affected by cancer; however, most adults do not meet cancer-specific PA recommendations. Lack of time, facility access, and travel distances are barriers to participation in PA interventions. eHealth technologies may address some of these barriers, serving as a viable way to promote PA behavior change in this population. However, no review from July 2018 has synthesized available evidence across eHealth and cancer types or examined the use of behavioral theory and behavior change techniques (BCTs), leaving important gaps in knowledge. Objective: This review aims to provide a comprehensive, updated overview of evidence on eHealth PA interventions for adults with cancer by describing the current state of the literature, exploring associations between intervention characteristics and effectiveness, and identifying future research needs. Methods: MEDLINE, Embase, CINAHL, SportDiscus, Scopus, and CENTRAL were searched for eHealth PA interventions for adults affected by cancer. Study selection and data extraction were performed in duplicate, with consultation from the senior author (NCR). BCT coding, risk of bias, and completeness of reporting were performed using standardized tools. Results were summarized via narrative synthesis and harvest plots. Weight analyses were conducted to explore the associations between intervention characteristics and effectiveness. Results: A total of 71 articles (67 studies) involving 6655 participants (mean age 56.7 years, SD 8.2) were included. Nearly 50\% (32/67) of the articles were published after July 2018. Significant postintervention PA increases were noted in 52\% (35/67) of the studies, and PA maintenance was noted in 41\% (5/12) of the studies that included a follow-up. Study duration, primary objectives, and eHealth modality (eg, websites, activity trackers, and SMS text messaging) varied widely. Social cognitive theory (23/67, 34\%) was the most used theory. The mean number of BCTs used across the studies was 13.5 (SD 5.5), with self-monitoring, credible sources, and goal setting being used in >90\% of studies. Weight analyses showed the greatest associations between increased PA levels and PA as a primary outcome (0.621), interventions using websites (0.656) or mobile apps (0.563), interventions integrating multiple behavioral theories (0.750), and interventions using BCTs of problem solving (0.657) and action planning (0.645). All studies had concerns with high risk of bias, mostly because of the risk of confounding, measurement bias, and incomplete reporting. Conclusions: A range of eHealth PA interventions may increase PA levels among adults affected by cancer, and specific components (eg, websites, use of theory, and action planning) may be linked to greater effectiveness. However, more work is needed to ascertain and optimize effectiveness, measure long-term effects, and address concerns with bias and incomplete reporting. This evidence is required to support arguments for integrating eHealth within PA promotion in oncology. ", doi="10.2196/28852", url="https://cancer.jmir.org/2021/3/e28852", url="http://www.ncbi.nlm.nih.gov/pubmed/34542415" } @Article{info:doi/10.2196/27576, author="Yu, Jing and Wu, Jiayi and Huang, Ou and Chen, Xiaosong and Shen, Kunwei", title="A Smartphone-Based App to Improve Adjuvant Treatment Adherence to Multidisciplinary Decisions in Patients With Early-Stage Breast Cancer: Observational Study", journal="J Med Internet Res", year="2021", month="Sep", day="16", volume="23", number="9", pages="e27576", keywords="breast cancer", keywords="adherence", keywords="multidisciplinary treatment", keywords="adjuvant treatment", keywords="smartphone-based app", keywords="mobile phone", abstract="Background: Multidisciplinary treatment (MDT) and adjuvant therapy are associated with improved survival rates in breast cancer. However, nonadherence to MDT decisions is common in patients. We developed a smartphone-based app that can facilitate the full-course management of patients after surgery. Objective: This study aims to investigate the influence factors of treatment nonadherence and to determine whether this smartphone-based app can improve the compliance rate with MDTs. Methods: Patients who had received a diagnosis of invasive breast cancer and had undergone MDT between March 2013 and May 2019 were included. Patients were classified into 3 groups: Pre-App cohort (November 2017, before the launch of the app); App nonused, cohort (after November 2017 but not using the app); and App used cohort (after November 2017 and using the app). Univariate and multivariate analyses were performed to identify the factors related to MDT adherence. Compliance with specific adjuvant treatments, including chemotherapy, radiotherapy, endocrine therapy, and targeted therapy, was also evaluated. Results: A total of 4475 patients were included, with Pre-App, App nonused, and App used cohorts comprising 2966 (66.28\%), 861 (19.24\%), and 648 (14.48\%) patients, respectively. Overall, 15.53\% (695/4475) patients did not receive MDT recommendations; the noncompliance rate ranged from 27.4\% (75/273) in 2013 to 8.8\% (44/500) in 2019. Multivariate analysis demonstrated that app use was independently associated with adherence to adjuvant treatment. Compared with the patients in the Pre-App cohort, patients in the App used cohort were less likely to deviate from MDT recommendations (odds ratio [OR] 0.61, 95\% CI 0.43-0.87; P=.007); no significant difference was found in the App nonused cohort (P=.77). Moreover, app use decreased the noncompliance rate for adjuvant chemotherapy (OR 0.41, 95\% CI 0.27-0.65; P<.001) and radiotherapy (OR 0.49, 95\% CI 0.25-0.96; P=.04), but not for anti-HER2 therapy (P=.76) or endocrine therapy (P=.39). Conclusions: This smartphone-based app can increase MDT adherence in patients undergoing adjuvant therapy; this was more obvious for adjuvant chemotherapy and radiotherapy. ", doi="10.2196/27576", url="https://www.jmir.org/2021/9/e27576", url="http://www.ncbi.nlm.nih.gov/pubmed/34528890" } @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/10.2196/30492, author="Higashi, T. Robin and Sweetenham, W. John and Israel, D. Aimee and Tiro, A. Jasmin", title="COVID-19 Communication From Seven Health Care Institutions in North Texas for English- and Spanish-Speaking Cancer Patients: Mixed Method Website Study", journal="JMIR Cancer", year="2021", month="Aug", day="31", volume="7", number="3", pages="e30492", keywords="COVID-19", keywords="coronavirus", keywords="safety net", keywords="internet", keywords="communication", abstract="Background: The COVID-19 pandemic has created an urgent need to rapidly disseminate health information, especially to those with cancer, because they face higher morbidity and mortality rates. At the same time, the pandemic's disproportionate impact on Latinx populations underscores the need for information to reach Spanish speakers. However, the equity of COVID-19 information communicated through institutions' online media to Spanish-speaking cancer patients is unknown. Objective: We conducted a multimodal, mixed method document review study to evaluate the equity of online information about COVID-19 and cancer available to English- and Spanish-speaking populations from seven health care institutions in North Texas, where one in five adults is Spanish-speaking. Our focus was less on the ``digital divide,'' which conveys disparities in access to computers and the internet based on the race/ethnicity, education, and income of at-risk populations; rather, our study asks the following question: to what extent is online content useful and culturally appropriate in meeting Spanish speakers' information needs? Methods: We reviewed 50 websites (33 English and 17 Spanish) over a period of 1 week in the middle of May 2020. We sampled seven institutions' main oncology and COVID web pages, and both internal (institutional) and external (noninstitutional) linked content. We conducted several analyses for each sampled page, including (1) thematic content analysis, (2) literacy level analysis using Readability Studio software, (3) coding using the Patient Education and Materials Assessment Tool (PEMAT), and (4) descriptive analysis of video and diversity content. Results: The themes most frequently addressed on English and Spanish websites differed. While ``resources/FAQs'' were frequently cited themes on both websites, English websites more frequently addressed ``news/updates'' and ``cancer+COVID,'' and Spanish websites addressed ``protection'' and ``COVID data.'' Spanish websites had on average a lower literacy level (11th grade) than English websites (13th grade), although still far above the recommended guideline of 6th to 8th grade. The PEMAT's overall average accessibility score was the same for English (n=33 pages) and Spanish pages (n=17 pages) at 82\%. Among the Dallas-Fort Worth organizations, the average accessibility of Spanish pages (n=7) was slightly lower than that of English pages (n=19) (77\% vs 81\%), due mostly to the discrepancy in English-only videos and visual aids. Of the 50 websites, 12 (24\%) had embedded videos; however, 100\% of videos were in English, including one on a Spanish website. Conclusions: We identified an uneven response among the seven health care institutions for providing equitable information to Spanish-speaking Dallas-Fort Worth residents concerned about COVID and cancer. Spanish speakers lack equal access in both diversity of content about COVID-19 and access to other websites, leaving an already vulnerable cancer patient population at greater risk. We recommend several specific actions to enhance content and navigability for Spanish speakers. ", doi="10.2196/30492", url="https://cancer.jmir.org/2021/3/e30492", url="http://www.ncbi.nlm.nih.gov/pubmed/34346886" } @Article{info:doi/10.2196/27824, author="van de Water, F. Lo{\"i}s and van den Boorn, G. H{\'e}ctor and Hoxha, Florian and Henselmans, Inge and Calff, M. Mart and Sprangers, G. Mirjam A. and Abu-Hanna, Ameen and Smets, A. Ellen M. and van Laarhoven, M. Hanneke W.", title="Informing Patients With Esophagogastric Cancer About Treatment Outcomes by Using a Web-Based Tool and Training: Development and Evaluation Study", journal="J Med Internet Res", year="2021", month="Aug", day="27", volume="23", number="8", pages="e27824", keywords="prediction tool", keywords="communication skills training", keywords="shared decision-making", keywords="risk communication", keywords="treatment outcomes", keywords="esophageal cancer", keywords="gastric cancer", keywords="patient-physician communication", abstract="Background: Due to the increasing use of shared decision-making, patients with esophagogastric cancer play an increasingly important role in the decision-making process. To be able to make well-informed decisions, patients need to be adequately informed about treatment options and their outcomes, namely survival, side effects or complications, and health-related quality of life. Web-based tools and training programs can aid physicians in this complex task. However, to date, none of these instruments are available for use in informing patients with esophagogastric cancer about treatment outcomes. Objective: This study aims to develop and evaluate the feasibility of using a web-based prediction tool and supporting communication skills training to improve how physicians inform patients with esophagogastric cancer about treatment outcomes. By improving the provision of treatment outcome information, we aim to stimulate the use of information that is evidence-based, precise, and personalized to patient and tumor characteristics and is communicated in a way that is tailored to individual information needs. Methods: We designed a web-based, physician-assisted prediction tool---Source---to be used during consultations by using an iterative, user-centered approach. The accompanying communication skills training was developed based on specific learning objectives, literature, and expert opinions. The Source tool was tested in several rounds---a face-to-face focus group with 6 patients and survivors, semistructured interviews with 5 patients, think-aloud sessions with 3 medical oncologists, and interviews with 6 field experts. In a final pilot study, the Source tool and training were tested as a combined intervention by 5 medical oncology fellows and 3 esophagogastric outpatients. Results: The Source tool contains personalized prediction models and data from meta-analyses regarding survival, treatment side effects and complications, and health-related quality of life. The treatment outcomes were visualized in a patient-friendly manner by using pictographs and bar and line graphs. The communication skills training consisted of blended learning for clinicians comprising e-learning and 2 face-to-face sessions. Adjustments to improve both training and the Source tool were made according to feedback from all testing rounds. Conclusions: The Source tool and training could play an important role in informing patients with esophagogastric cancer about treatment outcomes in an evidence-based, precise, personalized, and tailored manner. The preliminary evaluation results are promising and provide valuable input for the further development and testing of both elements. However, the remaining uncertainty about treatment outcomes in patients and established habits in doctors, in addition to the varying trust in the prediction models, might influence the effectiveness of the tool and training in daily practice. We are currently conducting a multicenter clinical trial to investigate the impact that the combined tool and training have on the provision of information in the context of treatment decision-making. ", doi="10.2196/27824", url="https://www.jmir.org/2021/8/e27824", url="http://www.ncbi.nlm.nih.gov/pubmed/34448703" } @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/10.2196/24835, author="Arietaleanizbeaskoa, Soledad Maria and Gil Rey, Erreka and Mendizabal Gallastegui, Nere and Garc{\'i}a-{\'A}lvarez, Arturo and De La Fuente, Ibon and Dom{\'i}nguez-Martinez, Silvia and Pablo, Susana and Coca, Aitor and Guti{\'e}rrez Santamar{\'i}a, Borja and Grandes, Gonzalo", title="Implementing Exercise in Standard Cancer Care (Bizi Orain Hybrid Exercise Program): Protocol for a Randomized Controlled Trial", journal="JMIR Res Protoc", year="2021", month="Aug", day="9", volume="10", number="8", pages="e24835", keywords="patients with cancer", keywords="physical activity", keywords="primary care", keywords="behavioral change", keywords="randomized controlled trial", keywords="overall survival", abstract="Background: Despite the established benefits of regular exercise for patients with cancer to counteract the deleterious effects of the disease itself and treatment-related adverse effects, most of them do not engage in sufficient levels of physical activity and there is a paucity of data on the integration of efficacious exercise programs that are accessible and generalizable to a large proportion of patients with cancer into routine cancer care. Objective: We intend to examine the effects attributable to the implementation of a community-based exercise program on cardiorespiratory functional capacity and quality of life for patients with cancer. Methods: This will be a hybrid study. In the first experimental phase, patients diagnosed with any type of cancer will be randomized into two parallel groups. One group immediately performs Bizi Orain, a 3-month supervised exercise program (3 times a week), in addition to behavioral counseling in a primary health care setting; the other is a reference group that starts the exercise program 3 months later (delayed treatment). In the second observational phase, the entire cohort of participants will be followed-up for 5 years. Any person diagnosed with cancer in the previous 2 years is eligible for the program. The program evaluation involves the uptake, safety, adherence, and effectiveness assessed after completion of the program and with follow-ups at 3, 6, 12, 24, 36, 48, and 60 months. The primary outcomes of the experimental study, to be compared between groups, are improved physical function and quality of life, whereas overall survival is the main objective of the prospective study. To analyze the association between changes in physical activity levels and overall survival, longitudinal mixed-effects models will be used for repeated follow-up measures. Results: A total of 265 patients have been enrolled into the study since January 2019, with 42 patients from the hematology service and 223 from the oncology service. Conclusions: Bizi Orain is the first population-based exercise program in Spain that will offer more insight into the implementation of feasible, generalizable, and sustainable supportive care services involving structured exercise to extend survival of patients with cancer, improve their physical function and quality of life, and reverse the adverse effects of their disease and related treatments, thereby reducing the clinical burden. Trial Registration: ClinicalTrials.gov NCT03819595; http://clinicaltrials.gov/ct2/show/NCT03819595 International Registered Report Identifier (IRRID): DERR1-10.2196/24835 ", doi="10.2196/24835", url="https://www.researchprotocols.org/2021/8/e24835", url="http://www.ncbi.nlm.nih.gov/pubmed/34383676" } @Article{info:doi/10.2196/28147, author="Oakley-Girvan, Ingrid and Watterson, L. Jessica and Jones, Cheryl and Houghton, C. Lauren and Gibbons, P. Marley and Gokal, Kajal and Magsamen-Conrad, Kate", title="Use of Social Media for Cancer Prevention Through Neighborhood Social Cohesion: Protocol for a Feasibility Study", journal="JMIR Res Protoc", year="2021", month="Jul", day="30", volume="10", number="7", pages="e28147", keywords="social cohesion", keywords="mothers", keywords="neighborhood", keywords="physical activity", keywords="social media", keywords="social", keywords="behavior", keywords="health outcomes", keywords="socioeconomic status", keywords="community health", keywords="chronic disease", keywords="social network", keywords="feasibility", keywords="wellbeing", keywords="cancer", abstract="Background: Social cohesion is associated with healthier behaviors and better health outcomes, and therefore may offer a mechanism for promoting better health. Low socioeconomic status (SES) communities face higher rates of chronic disease due to both community- and individual-level factors. Objective: The aim of this study is to leverage social cohesion to promote healthier behaviors and prevent chronic disease in a low SES community. This protocol outlines the methodology for a pilot study to assess the feasibility of an intervention (Free Time For Wellness [FT4W]) using a social networking platform (Nextdoor) with mothers living in an urban, low-income community to improve social cohesion and promote healthy behaviors. Methods: The study will involve three phases: (I) co-designing the intervention with mothers in the neighborhoods of interest, (II) implementing the intervention with community leaders through the social networking platform, and (III) evaluating the intervention's feasibility. Phase I of the study will include qualitative data collection and analysis from in-depth, semistructured interviews and a co-design group session with mothers. Phases II and III of the study include a pre- and postintervention survey of participating mothers. Neighborhood-level data on social cohesion will also be collected to enable comparison of outcomes between neighborhoods with higher and lower baseline social cohesion. Results: As of March 2021, recruitment and data collection for this study are complete. This protocol outlines our original study plan, although the final enrollment numbers and intervention implementation deviated from our initial planned methodology that is outlined in this protocol. These implementation learnings will be shared in subsequent publications of our study results. Conclusions: Ultimately, this study aims to: (1) determine the barriers and facilitators to finding free time for wellness among a population of low-income mothers to inform the co-design process, and (2) implement and study the feasibility of an intervention that leverages social cohesion to promote physical activity in a community of low-income mothers. The results of this study will provide preliminary feasibility evidence to inform a larger effectiveness trial, and will further our understanding of how social cohesion might influence well-being. International Registered Report Identifier (IRRID): RR1-10.2196/28147 ", doi="10.2196/28147", url="https://www.researchprotocols.org/2021/7/e28147", url="http://www.ncbi.nlm.nih.gov/pubmed/34328445" } @Article{info:doi/10.2196/28527, author="Yin, Kanhua and Zhou, Jingan and Singh, Preeti and Wang, Jin and Braun, Danielle and Hughes, S. Kevin", title="Search Behavior Regarding Cancer Susceptibility Genes Using a Clinical Decision Support Tool for Gene-Specific Penetrance: Content Analysis", journal="JMIR Cancer", year="2021", month="Jul", day="13", volume="7", number="3", pages="e28527", keywords="genetic testing", keywords="pathogenic variant", keywords="germline", keywords="risk communication", keywords="online health", keywords="digital health", keywords="cancer data", keywords="genetics", keywords="online tool", keywords="bioinformatics", keywords="web tool", keywords="cancer", abstract="Background: Genetic testing for germline cancer susceptibility genes is widely available. The Ask2Me.org (All Syndromes Known to Man Evaluator) tool is a clinical decision support tool that provides evidence-based risk predictions for individuals with pathogenic variants in cancer susceptibility genes. Objective: The aim of this study was to understand the search behavior of the Ask2Me.org tool users, identify the patterns of queries entered, and discuss how to further improve the tool. Methods: We analyzed the Ask2Me.org user-generated queries collected between December 12, 2018, and October 8, 2019. The gene frequencies of the user-generated queries were compared with previously published panel testing data to assess the correspondence between usage and prevalence of pathogenic variants. The frequencies of prior cancer in the user-generated queries were compared with the most recent US population--based cancer incidence. Results: A total of 10,085 search queries were evaluated. The average age submitted in the queries was 48.8 (SD 16.5) years, and 84.1\% (8478/10,085) of the submitted queries were for females. BRCA2 (1671/10,085, 16.6\%), BRCA1 (1627/10,085, 16.1\%), CHEK2 (994/10,085, 9.9\%), ATM (662/10,085, 6.6\%), and APC (492/10,085, 4.9\%) were the top 5 genes searched by users. There was a strong linear correlation between genes queried by users and the frequency of pathogenic variants reported in published panel testing data (r=0.95, r2=0.90, P<.001). Over half of the queries (5343/10,085, 53.0\%) included a prior personal history of cancer. The frequencies of prior cancers in the queries on females were strongly correlated with US cancer incidences (r=0.97, r2=0.95, P<.001), while the same correlation was weaker among the queries on males (r=0.69, r2=0.47, P=.02). Conclusions: The patients entered in the Ask2Me.org tool are a representative cohort of patients with pathogenic variants in cancer susceptibility genes in the United States. While a majority of the queries were on breast cancer susceptibility genes, users also queried susceptibility genes with lower prevalence, which may represent a transformation from single gene testing to multigene panel testing. Owing to these changing tides, more efforts are needed to improve evidence-based clinical decision support tools to better aid clinicians and their practice. ", doi="10.2196/28527", url="https://cancer.jmir.org/2021/3/e28527", url="http://www.ncbi.nlm.nih.gov/pubmed/34255640" } @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/10.2196/23637, author="Turkdogan, Sena and Schnitman, Gabriel and Wang, Tianci and Gotlieb, Raphael and How, Jeffrey and Gotlieb, Henri Walter", title="Development of a Digital Patient Education Tool for Patients With Cancer During the COVID-19 Pandemic", journal="JMIR Cancer", year="2021", month="Jun", day="21", volume="7", number="2", pages="e23637", keywords="digital health", keywords="eHealth", keywords="patient education", keywords="COVID-19", abstract="Background: Due to the COVID-19 pandemic, a large portion of oncology consultations have been conducted remotely. The maladaptation or compromise of care could negatively impact oncology patients and their disease management. Objective: We aimed to describe the development and implementation process of a web-based, animated patient education tool that supports oncology patients remotely in the context of fewer in-person interactions with health care providers. Methods: The platform created presents multilingual oncology care instructions. Animations concerning cancer care and mental health during the COVID-19 pandemic as well as immunotherapy and chemotherapy guides were the major areas of focus and represented 6 final produced video guides. Results: The videos were watched 1244 times in a period of 6 months. The most watched animation was the COVID-19 \& Oncology guide (viewed 565 times), followed by the video concerning general treatment orientations (viewed 249 times) and the video titled ``Chemotherapy'' (viewed 205 times). Although viewers were equally distributed among the age groups, most were aged 25 to 34 years (342/1244, 27.5\%) and were females (745/1244, 59.9\%). Conclusions: The implementation of a patient education platform can be designed to prepare patients and their caregivers for their treatment and thus improve outcomes and satisfaction by using a methodical and collaborative approach. Multimedia tools allow a portion of a patient's care to occur in a home setting, thereby freeing them from the need for hospital resources. ", doi="10.2196/23637", url="https://cancer.jmir.org/2021/2/e23637", url="http://www.ncbi.nlm.nih.gov/pubmed/34101611" } @Article{info:doi/10.2196/27052, author="Naik, Hiten and Johnson, Dimitri Maximilian Desmond and Johnson, Roger Michael", title="Internet Interest in Colon Cancer Following the Death of Chadwick Boseman: Infoveillance Study", journal="J Med Internet Res", year="2021", month="Jun", day="15", volume="23", number="6", pages="e27052", keywords="colon cancer", keywords="Google", keywords="Wikipedia", keywords="infodemiology", abstract="Background: Compared with White Americans, Black Americans have higher colon cancer mortality rates but lower up-to-date screening rates. Chadwick Boseman was a prominent Black American actor who died of colon cancer on August 28, 2020. As announcements of celebrity diagnoses often result in increased awareness, Boseman's death may have resulted in greater interest in colon cancer on the internet, particularly among Black Americans. Objective: This study aims to quantify the impact of Chadwick Boseman's death on web-based search interest in colon cancer and determine whether there was an increase in interest in regions of the United States with a greater proportion of Black Americans. Methods: We conducted an infoveillance study using Google Trends (GT) and Wikipedia pageview analysis. Using an autoregressive integrated moving average algorithm, we forecasted the weekly relative search volume (RSV) for GT search topics and terms related to colon cancer that would have been expected had his death not occurred and compared it with observed RSV data. This analysis was also conducted for the number of page views on the Wikipedia page for colorectal cancer. We then delineated GT RSV data for the term colon cancer for states and metropolitan areas in the United States and determined how the RSV values for these regions correlated with the percentage of Black Americans in that region. Differences in these correlations before and after Boseman's death were compared to determine whether there was a shift in the racial demographics of the individuals conducting the searches. Results: The observed RSVs for the topics colorectal cancer and colon cancer screening increased by 598\% and 707\%, respectively, and were on average 121\% (95\% CI 72\%-193\%) and 256\% (95\% CI 35\%-814\%) greater than expected during the first 3 months following Boseman's death. Daily Wikipedia page view volume during the 2 months following Boseman's death was on average 1979\% (95\% CI 1375\%-2894\%) greater than expected, and it was estimated that this represented 547,354 (95\% CI 497,708-585,167) excess Wikipedia page views. Before Boseman's death, there were negative correlations between the percentage of Black Americans living in a state or metropolitan area and the RSV for colon cancer in that area (r=?0.18 and r=?0.05, respectively). However, in the 2 weeks following his death, there were positive correlations between the RSV for colon cancer and the percentage of Black Americans per state and per metropolitan area (r=0.73 and r=0.33, respectively). These changes persisted for 4 months and were all statistically significant (P<.001). Conclusions: There was a significant increase in web-based activity related to colon cancer following Chadwick Boseman's death, particularly in areas with a higher proportion of Black Americans. This reflects a heightened public awareness that can be leveraged to further educate the public. ", doi="10.2196/27052", url="https://www.jmir.org/2021/6/e27052", url="http://www.ncbi.nlm.nih.gov/pubmed/34128824" } @Article{info:doi/10.2196/27076, author="Singleton, Anna and Raeside, Rebecca and Partridge, R. Stephanie and Hayes, Molly and Maka, Katherine and Hyun, K. Karice and Thiagalingam, Aravinda and Chow, K. Clara and Sherman, A. Kerry and Elder, Elisabeth and Redfern, Julie", title="Co-designing a Lifestyle-Focused Text Message Intervention for Women After Breast Cancer Treatment: Mixed Methods Study", journal="J Med Internet Res", year="2021", month="Jun", day="14", volume="23", number="6", pages="e27076", keywords="breast neoplasms", keywords="cancer survivors", keywords="text messaging", keywords="telemedicine", keywords="mobile health", keywords="co-design", abstract="Background: Breast cancer is the most common cancer among women globally. Recovery from breast cancer treatment can be mentally and physically challenging. SMS text message programs offer a novel way to provide health information and support, but few programs are co-designed with consumer representatives. Objective: This study aims to report the procedures and outcomes of a co-design process of a lifestyle-focused SMS text message program to support women's mental and physical health after breast cancer treatment. Methods: We followed an iterative mixed methods two-step process: (1) co-design workshop with consumers and health professionals and researchers to draft text messages and (2) evaluation of message content, which was scored (5-point Likert scale; 1=strongly disagree to 5=strongly agree) for ease of understanding, usefulness, and appropriateness, and readability (Flesch-Kincaid score). Additional free-text responses and semistructured interviews were coded into themes. Messages were edited or deleted based on the evaluations, with consumers' evaluations prioritized. Results: In step 1, co-designed text messages (N=189) were semipersonalized, and the main content themes were (1) physical activity and healthy eating, (2) medications and side effects, (3) mental health, and (4) general breast cancer information. In step 2, consumers (n=14) and health professionals and researchers (n=14) provided 870 reviews of 189 messages and found that most messages were easy to understand (799/870, 91.8\%), useful (746/870, 85.7\%), and appropriate (732/870, 84.1\%). However, consumers rated 50 messages differently from health professionals and researchers. On the basis of evaluations, 37.6\% (71/189) of messages were deleted, 36.5\% (69/189) were edited, and 12 new messages related to fatigue, self-care, and cognition were created. The final 130 text messages had a mean 7.12 (SD 2.8) Flesch-Kincaid grade level and 68.9 (SD 15.5) ease-of-reading score, which represents standard reading ease. Conclusions: Co-designing and evaluating a bank of evidence-based mental and physical health-themed text messages with breast cancer survivors, health professionals, and researchers was feasible and resulted in a bank of 130 text messages evaluated highly by participants. Some consumer evaluations differed from health professionals and researchers, supporting the importance of co-design. ", doi="10.2196/27076", url="https://www.jmir.org/2021/6/e27076", url="http://www.ncbi.nlm.nih.gov/pubmed/34125072" } @Article{info:doi/10.2196/23884, author="Donevant, Sara and Heiney, P. Sue and Wineglass, Cassandra and Schooley, Benjamin and Singh, Akanksha and Sheng, Jingxi", title="Perceptions of Endocrine Therapy in African-American Breast Cancer Survivors: Mixed Methods Study", journal="JMIR Form Res", year="2021", month="Jun", day="11", volume="5", number="6", pages="e23884", keywords="mHealth", keywords="breast cancer survivors", keywords="medication adherence", keywords="cultural considerations", keywords="mobile health applications", abstract="Background: Although the incidence of breast cancer is lower in African-American women than in White women, African-American women have a decreased survival rate. The difference in survival rate may stem from poor endocrine therapy adherence, which increases breast cancer recurrence. Therefore, accessible and culturally sensitive interventions to increase endocrine therapy adherence are necessary. Objective: The purpose of this concurrent convergent mixed methods study was to provide further data to guide the development of the proposed culturally sensitive mHealth app, STORY+ for African-American women with breast cancer. Methods: We recruited 20 African-American women diagnosed with estrogen-positive breast cancer and currently prescribed endocrine therapy. We used a concurrent convergent data collection method to (1) assess the use of smartphones and computers related to health care and (2) identify foundational aspects to support endocrine therapy adherence for incorporation in a mobile health app. Results: Overwhelmingly, the participants preferred using smartphones to using computers for health care. Communicating with health care providers and pharmacies was the most frequent health care use of smartphones, followed by exercise tracking, and accessing the patient portal. We identified 4 aspects of adherence to endocrine therapy and smartphone use for incorporation in app development. The factors that emerged from the integrated qualitative and quantitative data were (1) willingness to use, (2) side effects, (3) social connection, and (4) beliefs about endocrine therapy. Conclusions: Further research is needed to develop a culturally sensitive app for African-American women with breast cancer to improve adherence to endocrine therapy. Our work strongly suggests that this population would use the app to connect with other African-American breast cancer survivors and manage endocrine therapy. ", doi="10.2196/23884", url="https://formative.jmir.org/2021/6/e23884", url="http://www.ncbi.nlm.nih.gov/pubmed/34114955" } @Article{info:doi/10.2196/23839, author="Jones, Tarsha and Guzman, Ashlee and Silverman, Thomas and Freeman, Katherine and Kukafka, Rita and Crew, Katherine", title="Perceptions of Racially and Ethnically Diverse Women at High Risk of Breast Cancer Regarding the Use of a Web-Based Decision Aid for Chemoprevention: Qualitative Study Nested Within a Randomized Controlled Trial", journal="J Med Internet Res", year="2021", month="Jun", day="8", volume="23", number="6", pages="e23839", keywords="breast cancer", keywords="chemoprevention", keywords="qualitative", keywords="decision support", keywords="cancer", keywords="estrogen receptor", keywords="web-based", keywords="cancer risk", abstract="Background: Chemopreventive agents such as selective estrogen receptor modulators and aromatase inhibitors have proven efficacy in reducing breast cancer risk by 41\% to 79\% in high-risk women. Women at high risk of developing breast cancer face the complex decision of whether to take selective estrogen receptor modulators or aromatase inhibitors for breast cancer chemoprevention. RealRisks is a patient-centered, web-based decision aid (DA) designed to promote the understanding of breast cancer risk and to engage diverse women in planning a preference-sensitive course of decision making about taking chemoprevention. Objective: This study aims to understand the perceptions of women at high risk of developing breast cancer regarding their experience with using RealRisks---a DA designed to promote the uptake of breast cancer chemoprevention---and to understand their information needs. Methods: We completed enrollment to a randomized controlled trial among 300 racially and ethnically diverse women at high risk of breast cancer who were assigned to standard educational materials alone or such materials in combination with RealRisks. We conducted semistructured interviews with a subset of 21 high-risk women enrolled in the intervention arm of the randomized controlled trial who initially accessed the tool (on average, 1 year earlier) to understand how they interacted with the tool. All interviews were audio recorded, transcribed verbatim, and compared with digital audio recordings to ensure the accuracy of the content. We used content analysis to generate themes. Results: The mean age of the 21 participants was 58.5 (SD 10.1) years. The participants were 5\% (1/21) Asian, 24\% (5/21) Black or African American, and 71\% (15/21) White; 10\% (2/21) of participants were Hispanic or Latina. All participants reported using RealRisks after being granted access to the DA. In total, 4 overarching themes emerged from the qualitative analyses: the acceptability of the intervention, specifically endorsed elements of the DA, recommendations for improvements, and information needs. All women found RealRisks to be acceptable and considered it to be helpful (21/21, 100\%). Most women (13/21, 62\%) reported that RealRisks was easy to navigate, user-friendly, and easily accessible on the web. The majority of women (18/21, 86\%) felt that RealRisks improved their knowledge about breast cancer risk and chemoprevention options and that RealRisks informed their (17/21, 81\%) decision about whether or not to take chemoprevention. Some women (9/21, 43\%) shared recommendations for improvements, as they wanted more tailoring based on user characteristics, felt that the DA was targeting a narrow population of Hispanic or Latina by using graphic novel--style narratives, wanted more understandable terminology, and felt that the tool placed a strong emphasis on chemoprevention drugs. Conclusions: This qualitative study demonstrated the acceptability of the RealRisks web-based DA among a diverse group of high-risk women, who provided some recommendations for improvement. ", doi="10.2196/23839", url="https://www.jmir.org/2021/6/e23839", url="http://www.ncbi.nlm.nih.gov/pubmed/34100769" } @Article{info:doi/10.2196/22970, author="Ormel, Ilja and Onu, C. Charles and Magalhaes, Mona and Tang, Terence and Hughes, B. John and Law, Susan", title="Using a Mobile App--Based Video Recommender System of Patient Narratives to Prepare Women for Breast Cancer Surgery: Development and Usability Study Informed by Qualitative Data", journal="JMIR Form Res", year="2021", month="Jun", day="2", volume="5", number="6", pages="e22970", keywords="qualitative research", keywords="illness narratives", keywords="experiential information", keywords="breast cancer", keywords="surgery", keywords="tailored information", keywords="recommender system", keywords="patient information and communication", keywords="mobile app", keywords="mobile phone", abstract="Background: Women diagnosed with breast cancer are often bombarded with information. Such information overload can lead to misunderstandings and hamper women's capacity for making informed decisions about their care. For women with breast cancer, this uncertainty is particularly severe in the period before surgery. Personalized narratives about others' experiences can help patients better understand the disease course, the quality and type of care to be expected, the clinical decision-making processes, and the strategies for coping. Existing resources and eHealth apps rarely include experiential information, and no tools exist that tailor information for individual preferences and needs---offering the right information at the right time and in the right format. Combining high-quality experiential evidence with novel technical approaches may contribute to patient-centered solutions in this area. Objective: This study aims to design and seek preliminary feedback on a mobile app that will improve information access about surgery for patients with breast cancer, by drawing on a qualitative collection of personal narratives from a diverse sample of Canadian women and using video and audio recordings or audio recordings from the Canadian Health Experiences Research Network. Methods: In a previous study, we conducted in-depth interviews with 35 Canadian women and used video and audio recordings or audio recordings to collect stories about the lived experiences of breast cancer. The participants highlighted the need for more specific information between diagnosis and surgery that was relevant to their personal situations and preferences. They also wanted to learn from other women's experiences. We worked with patients, clinicians, and informatics experts to develop a mobile app that provides access to tailored experiential information relevant to women's personal situations and preferences. We completed focus groups and qualitative interviews, conducted a further analysis of the original qualitative data, designed novel software using artificial intelligence, and sought preliminary feedback from users on a new app via focus groups and a survey. Results: The secondary analysis of the breast cancer narratives revealed key themes and their interconnections relevant to the experience of surgery, including preparation, treatment decisions, aftercare, reconstruction, prostheses, lumpectomy and mastectomy, and complications. These themes informed the development of the structure and content of the app. We developed a recommender system within the app by using content matching (user and speaker profiles and user interests and video content) and collaborative filtering to identify clips marked as relevant by the user and by similar users. A 2-minute animated introductory video for users was developed. Pilot testing revealed generally positive responses regarding the content and value of this type of e-tool. Conclusions: Developing reliable, evidence-based tools and apps that are based on diverse collections of people's experiences of illness offers a novel approach to help manage the plethora of information that women face after a diagnosis of breast cancer. ", doi="10.2196/22970", url="https://formative.jmir.org/2021/6/e22970", url="http://www.ncbi.nlm.nih.gov/pubmed/34076582" } @Article{info:doi/10.2196/23350, author="Rossman, H. Andrea and Reid, W. Hadley and Pieters, M. Michelle and Mizelle, Cecelia and von Isenburg, Megan and Ramanujam, Nimmi and Huchko, J. Megan and Vasudevan, Lavanya", title="Digital Health Strategies for Cervical Cancer Control in Low- and Middle-Income Countries: Systematic Review of Current Implementations and Gaps in Research", journal="J Med Internet Res", year="2021", month="May", day="27", volume="23", number="5", pages="e23350", keywords="cervical cancer", keywords="digital health", keywords="mobile phones", keywords="low- and middle-income countries", keywords="colposcopy", keywords="uterine cervical neoplasms", keywords="telemedicine or mobile apps", keywords="cell phones", keywords="developing countries", abstract="Background: Nearly 90\% of deaths due to cervical cancer occur in low- and middle-income countries (LMICs). In recent years, many digital health strategies have been implemented in LMICs to ameliorate patient-, provider-, and health system--level challenges in cervical cancer control. However, there are limited efforts to systematically review the effectiveness and current landscape of digital health strategies for cervical cancer control in LMICs. Objective: We aim to conduct a systematic review of digital health strategies for cervical cancer control in LMICs to assess their effectiveness, describe the range of strategies used, and summarize challenges in their implementation. Methods: A systematic search was conducted to identify publications describing digital health strategies for cervical cancer control in LMICs from 5 academic databases and Google Scholar. The review excluded digital strategies associated with improving vaccination coverage against human papillomavirus. Titles and abstracts were screened, and full texts were reviewed for eligibility. A structured data extraction template was used to summarize the information from the included studies. The risk of bias and data reporting guidelines for mobile health were assessed for each study. A meta-analysis of effectiveness was planned along with a narrative review of digital health strategies, implementation challenges, and opportunities for future research. Results: In the 27 included studies, interventions for cervical cancer control focused on secondary prevention (ie, screening and treatment of precancerous lesions) and digital health strategies to facilitate patient education, digital cervicography, health worker training, and data quality. Most of the included studies were conducted in sub-Saharan Africa, with fewer studies in other LMIC settings in Asia or South America. A low risk of bias was found in 2 studies, and a moderate risk of bias was found in 4 studies, while the remaining 21 studies had a high risk of bias. A meta-analysis of effectiveness was not conducted because of insufficient studies with robust study designs and matched outcomes or interventions. Conclusions: Current evidence on the effectiveness of digital health strategies for cervical cancer control is limited and, in most cases, is associated with a high risk of bias. Further studies are recommended to expand the investigation of digital health strategies for cervical cancer using robust study designs, explore other LMIC settings with a high burden of cervical cancer (eg, South America), and test a greater diversity of digital strategies. ", doi="10.2196/23350", url="https://www.jmir.org/2021/5/e23350", url="http://www.ncbi.nlm.nih.gov/pubmed/34042592" } @Article{info:doi/10.2196/25357, author="Sideris, Antonios Georgios and Vyllioti, Aikaterini-Themis and Dima, Danai and Chill, Michael and Njuguna, Njogu", title="The Value of Web-Based Patient Education Materials on Transarterial Chemoembolization: Systematic Review", journal="JMIR Cancer", year="2021", month="May", day="7", volume="7", number="2", pages="e25357", keywords="transarterial chemoembolization", keywords="interventional radiology", keywords="interventional oncology", keywords="liver cancer", keywords="hepatocellular carcinoma", keywords="internet", keywords="patient education", keywords="systematic review", abstract="Background: Thousands of web searches are performed related to transarterial chemoembolization (TACE), given its palliative role in the treatment of liver cancer. Objective: This study aims to assess the reliability, quality, completeness, readability, understandability, and actionability of websites that provide information on TACE for patients. Methods: The five most popular keywords pertaining to TACE were searched on Google, Yahoo, and Bing. General website characteristics and the presence of Health On the Net Foundation code certification were documented. Website assessment was performed using the following scores: DISCERN, Journal of the American Medical Association, Flesch-Kincaid Grade Level, Flesch Reading Ease Score, and the Patient Education Materials Assessment Tool. A novel TACE content score was generated to evaluate website completeness. Results: The search yielded 3750 websites. In total, 81 website entities belonging to 78 website domains met the inclusion criteria. A medical disclaimer was not provided on 28\% (22/78) of website domains. Health On the Net code certification was present on 12\% (9/78) of website domains. Authorship was absent on 88\% (71/81) of websites, and sources were absent on 83\% (67/81) of websites. The date of publication or of the last update was not listed on 58\% (47/81) of websites. The median DISCERN score was 47.0 (IQR 40.5-54.0). The median TACE content score was 35 (IQR 27-43). The median readability grade level was in the 11th grade. Overall, 61\% (49/81) and 16\% (13/81) of websites were deemed understandable and actionable, respectively. Not-for-profit websites fared significantly better on the Journal of the American Medical Association, DISCERN, and TACE content scores. Conclusions: The content referring to TACE that is currently available on the web is unreliable, incomplete, difficult to read, understandable but not actionable, and characterized by low overall quality. Websites need to revise their content to optimally educate consumers and support shared decision-making. Trial Registration: PROSPERO International Prospective Register of Systematic Reviews CRD42020202747; https://www.crd.york.ac.uk/prospero/display\_record.php?ID=CRD42020202747 ", doi="10.2196/25357", url="https://cancer.jmir.org/2021/2/e25357", url="http://www.ncbi.nlm.nih.gov/pubmed/33960948" } @Article{info:doi/10.2196/23671, author="Richards, Rebecca and Kinnersley, Paul and Brain, Kate and Wood, Fiona", title="Cancer Clinicians' Views Regarding an App That Helps Patients With Cancer Meet Their Information Needs: Qualitative Interview Study", journal="JMIR Cancer", year="2021", month="May", day="6", volume="7", number="2", pages="e23671", keywords="education, medical", keywords="medical information exchange", keywords="smartphone", keywords="mobile apps", keywords="mobile phone", abstract="Background: Many patients with cancer have unmet information needs during the course of the illness. Smart devices, such as smartphones and tablet computers, provide an opportunity to deliver information to patients remotely. We aim to develop an app intervention to help patients with cancer meet their illness-related information needs in noninpatient settings. In addition to the in-depth exploration of the issues faced by the target users of a potential intervention, it is important to gain an understanding of the context in which the intervention will be used and the potential influences on its adoption. As such, understanding the views of clinicians is key to the successful implementation of this type of app in practice. Additionally, clinicians have an awareness of their patients' needs and can provide further insight into the type of app and features that might be most beneficial. Objective: This study aims to explore cancer clinicians' views on this type of intervention and whether they would support the use of an app in cancer care. Specifically, the perceived acceptability of an app used in consultations, useful app features, the potential benefits and disadvantages of an app, and barriers to app use were explored. Methods: A total of 20 qualitative, semistructured interviews were conducted with 22 clinicians from urological, colorectal, breast, or gynecological cancer clinics across 2 hospitals in South Wales. The interviews were audio recorded, transcribed, and analyzed using thematic analysis. Results: Clinicians felt that it would be acceptable for patients to use such an app in noninpatient settings, including during consultations. The benefits of this type of app were anticipated to be a more informed patient, an increased sense of control for patients, better doctor-patient communication, and a more efficient and effective consultation. In contrast, an increase in clinicians' workload and poorer communication in consultations, which depended on the included app features, were identified as potential disadvantages. The anticipated barriers to app use included patients' age and prior experience with smart technology, their access to smart devices, the confidentiality of information, and an avoidant coping approach to their condition. Conclusions: This study suggests that clinicians should support their patients in using an app to help them meet their information needs both at home and during consultations. This study highlights some of the potential barriers for this type of intervention in practice, which could be minimized during the intervention design process. ", doi="10.2196/23671", url="https://cancer.jmir.org/2021/2/e23671", url="http://www.ncbi.nlm.nih.gov/pubmed/33955836" } @Article{info:doi/10.2196/24062, author="Morse, S. Robert and Lambden, Kaley and Quinn, Erin and Ngoma, Twalib and Mushi, Beatrice and Ho, Xian Yun and Ngoma, Mamsau and Mahuna, Habiba and Sagan, B. Sarah and Mmari, Joshua and Miesfeldt, Susan", title="A Mobile App to Improve Symptom Control and Information Exchange Among Specialists and Local Health Workers Treating Tanzanian Cancer Patients: Human-Centered Design Approach", journal="JMIR Cancer", year="2021", month="Mar", day="23", volume="7", number="1", pages="e24062", keywords="mobile health", keywords="mHealth", keywords="user-centered design", keywords="palliative care", keywords="pain", keywords="cancer", keywords="sub-Saharan Africa", keywords="mobile phone", abstract="Background: Improving access to end-of-life symptom control interventions among cancer patients is a public health priority in Tanzania, and innovative community-based solutions are needed. Mobile health technology holds promise; however, existing resources are limited, and outpatient access to palliative care specialists is poor. A mobile platform that extends palliative care specialist access via shared care with community-based local health workers (LHWs) and provides remote support for pain and other symptom management can address this care gap. Objective: The aim of this study is to design and develop mobile-Palliative Care Link (mPCL), a web and mobile app to support outpatient symptom assessment and care coordination and control, with a focus on pain. Methods: A human-centered iterative design framework was used to develop the mPCL prototype for use by Tanzanian palliative care specialists (physicians and nurses trained in palliative care), poor-prognosis cancer patients and their lay caregivers (patients and caregivers), and LHWs. Central to mPCL is the validated African Palliative Care Outcome Scale (POS), which was adapted for automated, twice-weekly collection of quality of life--focused patient and caregiver responses and timely review, reaction, and tracking by specialists and LHWs. Prototype usability testing sessions were conducted in person with 21 key informants representing target end users. Sessions consisted of direct observations and qualitative and quantitative feedback on app ease of use and recommendations for improvement. Results were applied to optimize the prototype for subsequent real-world testing. Early pilot testing was conducted by deploying the app among 10 patients and caregivers, randomized to mPCL use versus phone-contact POS collection, and then gathering specialist and study team feedback to further optimize the prototype for a broader randomized field study to examine the app's effectiveness in symptom control among cancer patients. Results: mPCL functionalities include the ability to create and update a synoptic clinical record, regular real-time symptom assessment, patient or caregiver and care team communication and care coordination, symptom-focused educational resources, and ready access to emergency phone contact with a care team member. Results from the usability and pilot testing demonstrated that all users were able to successfully navigate the app, and feedback suggests that mPCL has clinical utility. User-informed recommendations included further improvement in app navigation, simplification of patient and caregiver components and language, and delineation of user roles. Conclusions: We designed, built, and tested a usable, functional mobile app prototype that supports outpatient palliative care for Tanzanian patients with cancer. mPCL is expressly designed to facilitate coordinated care via customized interfaces supporting core users---patients or caregivers, LHWs, and members of the palliative care team---and their respective roles. Future work is needed to demonstrate the effectiveness and sustainability of mPCL to remotely support the symptom control needs of Tanzanian cancer patients, particularly in harder-to-reach areas. ", doi="10.2196/24062", url="https://cancer.jmir.org/2021/1/e24062", url="http://www.ncbi.nlm.nih.gov/pubmed/33755022" } @Article{info:doi/10.2196/23927, author="Martin, Elise and Di Meglio, Antonio and Charles, Cecile and Ferreira, Arlindo and Gbenou, Arnauld and Blond, Marine and Fagnou, Benoit and Arvis, Johanna and Pistilli, Barbara and Saghatchian, Mahasti and Vaz Luis, Ines", title="Use of mHealth to Increase Physical Activity Among Breast Cancer Survivors With Fatigue: Qualitative Exploration", journal="JMIR Cancer", year="2021", month="Mar", day="22", volume="7", number="1", pages="e23927", keywords="mHealth", keywords="physical activity", keywords="breast cancer", keywords="cancer-related fatigue", keywords="qualitative study", keywords="survivorship", abstract="Background: Physical activity has shown beneficial effects in the treatment of breast cancer fatigue; nevertheless, a significant portion of patients remain insufficiently physically active after breast cancer. Currently most patients have a smartphone, and therefore mobile health (mHealth) holds the promise of promoting health behavior uptake for many of them. Objective: In this study, we explored representations, levers, and barriers to physical activity and mHealth interventions among inactive breast cancer patients with fatigue. Methods: This was an exploratory, qualitative study including breast cancer patients from a French cancer center. A total of 4 focus groups were conducted with 9 patients; 2 independent groups of patients (groups A and B) were interviewed at 2 consecutive times (sessions 1 to 4), before and after their participation in a 2-week mHealth group experience consisting of (1) a competitive virtual exercise group activity (a fictitious world tour), (2) participation in a daily chat network, and (3) access to physical activity information and world tour classification feedback. We used a thematic content analysis. Results: Several physical activity levers emerged including (1) physical factors such as perception of physical benefit and previous practice, (2) psychological factors such as motivation increased by provider recommendations, (3) social factors such as group practice, and (4) organizational factors including preplanning physical activity sessions. The main barriers to physical activity identified included late effects of cancer treatment, lack of motivation, and lack of time. The lack of familiarity with connected devices was perceived as the main barrier to the use of mHealth as a means to promote physical activity. The tested mHealth group challenge was associated with several positive representations including well-being and good habit promotion and being a motivational catalyzer. Following feedback, modifications were implemented into the mHealth challenge. Conclusions: mHealth-based, easily accessed group challenges were perceived as levers for the practice of physical activity in this population. mHealth-based group challenges should be explored as options to promote physical activity in a population with fatigue after breast cancer. ", doi="10.2196/23927", url="https://cancer.jmir.org/2021/1/e23927", url="http://www.ncbi.nlm.nih.gov/pubmed/33749606" } @Article{info:doi/10.2196/25602, author="Oman, P. Sven and Zaver, Himesh and Waddle, Mark and Corral, E. Juan", title="Quality and Readability of Web-Based Information for Patients With Pancreatic Cysts: DISCERN and Readability Test Analysis", journal="JMIR Cancer", year="2021", month="Mar", day="16", volume="7", number="1", pages="e25602", keywords="internet", keywords="pancreatic cyst", keywords="health literacy", keywords="patient education", keywords="pancreas", keywords="information seeking", abstract="Background: Pancreatic cysts are a complex medical problem with several treatment options. Patients use web-based health information to understand their conditions and to guide treatment choices. Objective: The goal of this study was to describe the quality and readability of publicly available web-based information on pancreatic cysts and to compare this information across website affiliations. Methods: A Google search for ``pancreatic cysts'' was performed and the first 30 websites were evaluated. Website affiliations were classified as academic, media, nonprofit, government, or not disclosed. Information describing cancer risk was recorded. The DISCERN instrument measured the quality of content regarding treatment choices. Four standardized tests were used to measure readability. Results: Twenty-one websites were included. The majority of the websites (20/21, 95\%) described the cancer risk associated with pancreatic cysts. Nearly half of the websites were written by an academic hospital or organization. The average DISCERN score for all websites was 40.4 (range 26-65.5, maximum 80). Websites received low scores due to lack of references, failure to describe the risks of treatment, or lack of details on how treatment choices affect quality of life. The average readability score was 14.74 (range 5.76-23.85, maximum 19+), indicating a college reading level. There were no significant differences across website affiliation groups. Conclusions: Web-based information for patients with pancreatic cysts is of moderate quality and is written above the reading level of most Americans. Gastroenterological, cancer treatment organizations, and physicians should advocate for improving the available information by providing cancer risk stratification, treatment impact on quality of life, references, and better readability. ", doi="10.2196/25602", url="https://cancer.jmir.org/2021/1/e25602", url="http://www.ncbi.nlm.nih.gov/pubmed/33724203" } @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/10.2196/18325, author="Wolbers, Roos and Bode, Christina and Siemerink, Ester and Siesling, Sabine and Pieterse, Marcel", title="Cognitive Bias Modification Training to Improve Implicit Vitality in Patients With Breast Cancer: App Design Using a Cocreation Approach", journal="JMIR Form Res", year="2021", month="Mar", day="10", volume="5", number="3", pages="e18325", keywords="breast cancer", keywords="cognitive bias modification", keywords="eHealth", keywords="fatigue", keywords="oncology", keywords="psychology", keywords="vitality", abstract="Background: More than 50\% of all patients with breast cancer experience fatigue symptoms during and after their treatment course. Recent evidence has shown that fatigue is partly driven by cognitive biases such as the self-as-fatigued identity bias, which may be corrected with computer-based cognitive bias modification (CBM) techniques. Objective: The aim of this study was to design a CBM-training app by adopting a cocreation approach. Methods: Semistructured interviews were conducted with 7 health care professionals, 3 patients with breast cancer, and 2 patient advocates. The aim of the interviews was to collect input for the design of the CBM training, taking the values and preferences of the stakeholders into account, and to determine the timing and implementation of the training in the treatment course. Results: Overall, the interviews showed that the concept of CBM was accepted among all stakeholders. Important requirements were revealed such as the training needs to be simple and undemanding, yet engaging and persuasive. Based on the results, an eHealth app IVY (Implicit VitalitY) was created. The findings from the interviews suggested that IVY should be offered early in the breast cancer treatment course and should be carefully aligned with clinical treatment. Conclusions: The findings of this study show that using CBM as a preventive approach to target cancer-related fatigue is an innovative technique, and this approach was embraced by breast cancer stakeholders. Our study suggests that CBM training has several benefits such as being easy to use and potentially increasing perceived self-control in patients. ", doi="10.2196/18325", url="https://formative.jmir.org/2021/3/e18325", url="http://www.ncbi.nlm.nih.gov/pubmed/33688833" } @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/10.2196/25184, author="Sato, Ann and Haneda, Eri and Suganuma, Nobuyasu and Narimatsu, Hiroto", title="Preliminary Screening for Hereditary Breast and Ovarian Cancer Using a Chatbot Augmented Intelligence Genetic Counselor: Development and Feasibility Study", journal="JMIR Form Res", year="2021", month="Feb", day="5", volume="5", number="2", pages="e25184", keywords="artificial intelligence", keywords="augmented intelligence", keywords="hereditary cancer", keywords="familial cancer", keywords="IBM Watson", keywords="preliminary screening", keywords="cancer", keywords="genetics", keywords="chatbot", keywords="screening", keywords="feasibility", abstract="Background: Breast cancer is the most common form of cancer in Japan; genetic background and hereditary breast and ovarian cancer (HBOC) are implicated. The key to HBOC diagnosis involves screening to identify high-risk individuals. However, genetic medicine is still developing; thus, many patients who may potentially benefit from genetic medicine have not yet been identified. Objective: This study's objective is to develop a chatbot system that uses augmented intelligence for HBOC screening to determine whether patients meet the National Comprehensive Cancer Network (NCCN) BRCA1/2 testing criteria. Methods: The system was evaluated by a doctor specializing in genetic medicine and certified genetic counselors. We prepared 3 scenarios and created a conversation with the chatbot to reflect each one. Then we evaluated chatbot feasibility, the required time, the medical accuracy of conversations and family history, and the final result. Results: The times required for the conversation were 7 minutes for scenario 1, 15 minutes for scenario 2, and 16 minutes for scenario 3. Scenarios 1 and 2 met the BRCA1/2 testing criteria, but scenario 3 did not, and this result was consistent with the findings of 3 experts who retrospectively reviewed conversations with the chatbot according to the 3 scenarios. A family history comparison ascertained by the chatbot with the actual scenarios revealed that each result was consistent with each scenario. From a genetic medicine perspective, no errors were noted by the 3 experts. Conclusions: This study demonstrated that chatbot systems could be applied to preliminary genetic medicine screening for HBOC. ", doi="10.2196/25184", url="https://formative.jmir.org/2021/2/e25184", url="http://www.ncbi.nlm.nih.gov/pubmed/33544084" } @Article{info:doi/10.2196/22061, author="Kabukye, K. Johnblack and Ilozumba, Onaedo and Broerse, W. Jacqueline E. and de Keizer, Nicolette and Cornet, Ronald", title="Implementation of an Interactive Voice Response System for Cancer Awareness in Uganda: Mixed Methods Study", journal="JMIR Mhealth Uhealth", year="2021", month="Jan", day="26", volume="9", number="1", pages="e22061", keywords="telemedicine", keywords="medical oncology", keywords="health promotion", keywords="low-and-middle-income countries", keywords="participatory research", keywords="mobile phone", abstract="Background: Cancer awareness is crucial for cancer care and prevention. However, cancer awareness in Uganda is low, and access to cancer information is limited. Objective: This study aims to (1) understand the cancer awareness situation in Uganda (perceptions, beliefs, information needs, and challenges to accessing cancer information) and opinions about interactive voice response (IVR) systems; (2) develop cancer awareness messages and implement them in an IVR system; and (3) evaluate user acceptance and use of the IVR system. Methods: A participatory design approach was adopted. To understand cancer awareness needs and challenges, 3 interviews and 7 focus group discussions (FGDs) were conducted with cancer health care providers, patients with cancer, caregivers and survivors, administrators, and lay citizens (n=73). On the basis of the resulting qualitative data, audio messages addressing cancer information needs were developed and implemented in an IVR system. The system and messages were tested with users (n=12) during 2 co-design workshops before final rollout. Finally, the system was evaluated over 6 months after going live, using call records and user feedback from telephone interviews with callers (n=40). Results: The cancer information needs included general topics such as what cancer is, what causes it, cancer screening and diagnosis, cancer treatment, and practical information on what to expect during cancer care. There were also myths and misconceptions that need to be addressed, such as that cancer is due to witchcraft and has no treatment. Information on COVID-19 was also sought after following the outbreak. We developed 20 audio cancer messages (approximately 2 minutes each) in English and Luganda, along with 14 IVR navigation instructions. These were implemented in an IVR system with 24/7 availability from all over Uganda via a toll-free multi-channel telephone number. The total number of calls made to the IVR system 6 months after going live was 3820. Of these, 2437 (63.8\%) lasted at least 30 seconds and were made from 1230 unique telephone numbers. There were 191 voice messages and 760 calls to live agents, most of which (681/951, 71.6\%) were in Luganda. Call volumes peaked following advertisement of the system and lockdowns due to COVID-19. Participants were generally familiar with IVR technology, and caller feedback was largely positive. Cited benefits included convenience, toll-free access, and detailed information. Recommendations for improvement of the system included adding live agents and marketing of the system to target users. Conclusions: IVR technology provides an acceptable and accessible method for providing cancer information to patients and the general public in Uganda. However, a need remains for health system reforms to provide additional cancer information sources and improve cancer care services in general. ", doi="10.2196/22061", url="http://mhealth.jmir.org/2021/1/e22061/", url="http://www.ncbi.nlm.nih.gov/pubmed/33496672" } @Article{info:doi/10.2196/24414, author="Terra, Lara and Hooning, J. Maartje and Heemskerk-Gerritsen, M. Bernadette A. and van Beurden, Marc and Roeters van Lennep, E. Jeanine and van Doorn, C. Helena and de Hullu, A. Joanne and Mom, Constantijne and van Dorst, L. Eleonora B. and Mourits, E. Marian J. and Slangen, M. Brigitte F. and Gaarenstroom, N. Katja and Zillikens, Carola M. and Leiner, Tim and van der Kolk, Lizet and Collee, Margriet and Wevers, Marijke and Ausems, M. Margreet G. E. and van Engelen, Klaartje and Berger, PV Lieke and van Asperen, J. Christi and Gomez-Garcia, B. Encarna and van de Beek, Irma and Rookus, A. Matti and Hauptmann, Michael and Bleiker, M. Eveline and Schagen, B. Sanne and Aaronson, K. Neil and Maas, M. Angela H. E. and van Leeuwen, E. Flora", title="Long-Term Morbidity and Health After Early Menopause Due to Oophorectomy in Women at Increased Risk of Ovarian Cancer: Protocol for a Nationwide Cross-Sectional Study With Prospective Follow-Up (HARMOny Study)", journal="JMIR Res Protoc", year="2021", month="Jan", day="22", volume="10", number="1", pages="e24414", keywords="risk-reducing salpingo-oophorectomy", keywords="BRCA1/2", keywords="cardiovascular disease", keywords="osteoporosis", keywords="cognition", keywords="health-related quality of life", abstract="Background: BRCA1/2 mutation carriers are recommended to undergo risk-reducing salpingo-oophorectomy (RRSO) at 35 to 45 years of age. RRSO substantially decreases ovarian cancer risk, but at the cost of immediate menopause. Knowledge about the potential adverse effects of premenopausal RRSO, such as increased risk of cardiovascular disease, osteoporosis, cognitive dysfunction, and reduced health-related quality of life (HRQoL), is limited. Objective: The aim of this study is to assess the long-term health effects of premenopausal RRSO on cardiovascular disease, bone health, cognitive functioning, urological complaints, sexual functioning, and HRQoL in women with high familial risk of breast or ovarian cancer. Methods: We will conduct a multicenter cross-sectional study with prospective follow-up, nested in a nationwide cohort of women at high familial risk of breast or ovarian cancer. A total of 500 women who have undergone RRSO before 45 years of age, with a follow-up period of at least 10 years, will be compared with 250 women (frequency matched on current age) who have not undergone RRSO or who have undergone RRSO at over 55 years of age. Participants will complete an online questionnaire on lifestyle, medical history, cardiovascular risk factors, osteoporosis, cognitive function, urological complaints, and HRQoL. A full cardiovascular assessment and assessment of bone mineral density will be performed. Blood samples will be obtained for marker analysis. Cognitive functioning will be assessed objectively with an online neuropsychological test battery. Results: This study was approved by the institutional review board in July 2018. In February 2019, we included our first participant. As of November 2020, we had enrolled 364 participants in our study. Conclusions: Knowledge from this study will contribute to counseling women with a high familial risk of breast/ovarian cancer about the long-term health effects of premenopausal RRSO. The results can also be used to offer health recommendations after RRSO. Trial Registration: ClinicalTrials.gov NCT03835793; https://clinicaltrials.gov/ct2/show/NCT03835793. International Registered Report Identifier (IRRID): DERR1-10.2196/24414 ", doi="10.2196/24414", url="http://www.researchprotocols.org/2021/1/e24414/", url="http://www.ncbi.nlm.nih.gov/pubmed/33480862" } @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/10.2196/20510, author="Thiessen, Maclean and Sinclair, Shane and Tang, A. Patricia and Raffin Bouchal, Shelley", title="Information Access and Use by Patients With Cancer and Their Friends and Family: Development of a Grounded Theory", journal="J Med Internet Res", year="2020", month="Oct", day="29", volume="22", number="10", pages="e20510", keywords="persons", keywords="personal autonomy", keywords="patient-centered care", keywords="health education", keywords="health information--seeking behavior", keywords="grounded theory", keywords="empowerment", keywords="cancer", keywords="qualitative research", keywords="adaptation, psychological", keywords="mobile phone", abstract="Background: Information has been identified as a commonly unmet supportive care need for those living with cancer (ie, patients and their friends and family). The information needed to help individuals plan their lives around the consequences of cancer, such as the receipt of health care, is an example of an important informational need. A suitable theory to guide the development of interventions designed to meet this informational need has not been identified by the authors. Objective: The aim of this study is to generate a grounded theory capable of guiding the development of interventions designed to assist those living with cancer in meeting their informational needs. Methods: Classic grounded theory was used to analyze data collected through digitally recorded one-on-one audio interviews with 31 patients with cancer and 29 friends and family members. These interviews focused on how the participants had accessed and used information to plan their lives and what barriers they faced in obtaining and using this information. Results: The theory that emerged consisted of 4 variables: personal projects, cancer as a source of disruption to personal projects, information as the process of accessing and interpreting cancer-related data (CRD) to inform action, and CRD quality as defined by accessibility, credibility, applicability, and framing. CRD quality as a moderator of personal project disruption by cancer is the core concept of this theory. Conclusions: Informational resources providing accessible, credible, applicable, and positively framed CRD are likely key to meeting the information needs of those affected by cancer. Web-based informational resources delivering high-quality CRD focused on assisting individuals living with cancer in maintaining and planning their personal projects are predicted to improve quality of life. Research is needed to develop and integrate resources informed by this theoretical framework into clinical practice. ", doi="10.2196/20510", url="http://www.jmir.org/2020/10/e20510/", url="http://www.ncbi.nlm.nih.gov/pubmed/33118940" } @Article{info:doi/10.2196/16138, author="Xie, Juan and Xie, Shi and Cheng, Ying and He, Zhe", title="Beliefs and Information Seeking in Patients With Cancer in Southwest China: Survey Study", journal="JMIR Cancer", year="2020", month="Aug", day="21", volume="6", number="2", pages="e16138", keywords="cancer information seeking", keywords="cancer belief", keywords="fatalism", keywords="southwest China", abstract="Background: Although previous studies have reported the cancer information-seeking behaviors among patients in high-income countries, the cancer information-seeking practices of patients living in low- and middle-income areas are less known. Objective: This study investigated the beliefs and information-seeking patterns of cancer patients in southwest China. Methods: A questionnaire was designed, and data were collected in two hospitals (N=285) in southwest China. Statistical analyses included bivariate analyses and regressions. Results: Patients' attitudes towards cancer fatalism were significantly influenced by marital status (P<.001), education (P<.001), and household income (P<.001). Moreover, endorsing fatalistic belief was positively associated with age (r=0.35, P<.001). The regression model showed that younger patients (odds ratio [OR] 0.96, 95\% CI 0.93-0.99) and those with higher education (OR 1.75, 95\% CI 1.09-2.81) were more likely to seek information. Additionally, patients who were less confident in getting information were more likely to find information (OR 1.70, 95\% CI 1.15-2.52), while fatalism belief was not significant in the regression (OR 0.65, 95\% CI 0.22-1.95). Conclusions: This study explored the information-seeking patterns of cancer patients in southwest China. It was found that many Chinese people endorsed cancer fatalism. These pessimistic beliefs about the potential to prevent and to cure cancer correlate with rather than cause cancer-related information seeking. However, self-efficacy about the confidence in finding needed cancer information was a significant predictor of information-seeking. ", doi="10.2196/16138", url="http://cancer.jmir.org/2020/2/e16138/", url="http://www.ncbi.nlm.nih.gov/pubmed/32821061" } @Article{info:doi/10.2196/18779, author="Park, Kyung Bu and Kim, Yoon Ji and Rogers, E. Valerie", title="Development and Usability Evaluation of a Facebook-Based Intervention Program for Childhood Cancer Patients: Mixed Methods Study", journal="J Med Internet Res", year="2020", month="Jul", day="28", volume="22", number="7", pages="e18779", keywords="pediatric cancer patients", keywords="childhood cancer", keywords="social network site", keywords="Facebook", keywords="usability", abstract="Background: Childhood cancers previously considered to be incurable now have 5-year survival rates up to 84\%. Nevertheless, these patients remain at risk of morbidity and mortality from therapy-related complications. Thus, patient education and self-management strategies for promoting a healthy lifestyle are of tantamount importance for improving short- and long-term health outcomes. A Facebook-based ``Healthy Teens for Soaam'' (a Korean term for childhood cancers) program was developed to help improve knowledge and self-management practices of teens with cancer related to their disease and treatment. Objective: The two-fold purpose of this usability study was (1) to describe the process of developing an 8-week Facebook-based intervention program for teens with cancer, and (2) to evaluate its usability to refine the program. Methods: Multiple phases and methods were employed to develop and evaluate the usability of the program. Study phases included: (1) needs assessment through focus group interviews and qualitative content analysis, (2) development of module content, (3) expert review and feedback on module content, (4) Facebook-based program development, (5) usability evaluation by heuristic evaluation, (6) usability evaluation by targeted end-user testing, and (7) modification and final version of the program. Usability of the final version was confirmed through feedback loops of these phases. Results: Based on 6 focus group discussion sessions, it was determined that teens with cancer were interested in seeing stories of successful childhood cancer cases and self-management after discharge, and preferred multimedia content over text. Therefore, each Facebook module was redesigned to include multimedia materials such as relevant video clips tailored for teens. Usability assessed by heuristic evaluation and user testing revealed several critical usability issues, which were then revised. Potential end users tested the final program and perceived it to be usable and useful for teens with cancer. Conclusions: To our knowledge, ``Healthy Teens for Soaam'' is the first Facebook-based intervention program for teens with cancer. We actively worked with current childhood cancer patients and survivors to develop and improve this program, achieved good usability, and met the expressed needs and preferences of target end users. This 8-week Facebook-based educational program for teens with cancer, developed as the first step of an upcoming intervention study, will be useful for improving knowledge and self-management strategies of teens. ", doi="10.2196/18779", url="http://www.jmir.org/2020/7/e18779/", url="http://www.ncbi.nlm.nih.gov/pubmed/32720897" } @Article{info:doi/10.2196/15539, author="Marthick, Michael and Janssen, Anna and Cheema, S. Birinder and Alison, Jennifer and Shaw, Tim and Dhillon, Haryana", title="Feasibility of an Interactive Patient Portal for Monitoring Physical Activity, Remote Symptom Reporting, and Patient Education in Oncology: Qualitative Study", journal="JMIR Cancer", year="2019", month="Nov", day="28", volume="5", number="2", pages="e15539", keywords="physical activity", keywords="patient Web portals", keywords="neoplasms", abstract="Background: Digital health interventions, such as the use of patient portals, have been shown to offer benefits to a range of patients including those with a diagnosis of cancer. Objective: This study aimed to explore the participant experience and perception of using an interactive Web-based portal for monitoring physical activity, remote symptom reporting, and delivering educational components. Methods: Participants who were currently under treatment or had recently completed intensive treatment for cancer were recruited to three cohorts and invited to join a Web-based portal to enhance their physical activity. Cohort 1 received Web portal access and an activity monitor; cohort 2 had additional summative messaging; and cohort 3 had additional personalized health coaching messaging. Following the 10-week intervention, participants were invited to participate in a semistructured interview. Interview recordings were transcribed and evaluated using qualitative thematic analysis. Results: A total of 17 semistructured interviews were carried out. Participants indicated that using the Web portal was feasible. Personalized messaging improved participant perceptions of the value of the intervention. There was a contrast between cohorts and levels of engagement with increasing health professional contact leading to an increase in engagement. Educational material needs to be tailored to the participants' cancer treatment status, health literacy, and background. Conclusions: Participants reported an overall positive experience using the Web portal and that personalized messaging positively impacted on their health behaviors. Future studies should focus more on design of interventions, ensuring appropriate tailoring of information and personalization of behavioral support messaging. International Registered Report Identifier (IRRID): RR2-10.2196/9586 ", doi="10.2196/15539", url="http://cancer.jmir.org/2019/2/e15539/", url="http://www.ncbi.nlm.nih.gov/pubmed/31778123" } @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/10.2196/14241, author="Bender, L. Jacqueline and Feldman-Stewart, Deb and Tong, Christine and Lee, Karen and Brundage, Michael and Pai, Howard and Robinson, John and Panzarella, Tony", title="Health-Related Internet Use Among Men With Prostate Cancer in Canada: Cancer Registry Survey Study", journal="J Med Internet Res", year="2019", month="Nov", day="19", volume="21", number="11", pages="e14241", keywords="prostate cancer", keywords="internet", keywords="health decision making", keywords="digital divide", abstract="Background: After a prostate cancer diagnosis, men want information about their disease and treatment options. The internet offers a convenient means to deliver health information to patients with prostate cancer. However, there are concerns about the use of the internet among this largely senior population. Objective: This study aimed to determine the patterns and factors associated with the use of the internet as a source of health information among Canadian men with prostate cancer and the features and information required in a website. Methods: Population surveys were conducted in four Canadian provinces (British Columbia, Alberta, Saskatchewan, and Ontario) in 2014-2015. Data analyses included descriptive, bivariable, and multivariable analyses. The Pearson Chi-square and univariable regression were used to examine associations between independent variables and health-related internet use. Correlates of health-related internet use were analyzed using multivariable logistic regression. Results: A total of 1362 patients responded across the four provinces. The mean age of respondents was 69 years (SD 8.2). In addition, 82\% (n=1071) were internet users and 71\% (n=910) used the internet daily. Further, 65\% (n=784) used the internet as a source of prostate cancer information, and 40\% (n=521) were confident about using information obtained from the internet to make health decisions. Men who used the internet to obtain prostate cancer information were more likely to be active information seekers (odds ratio [OR]: 4.5, 95\% CI 2.6-7.8), be confident using information from the internet to make health decisions (OR: 3.6, 95\% CI 2.3-5.7), have broadband internet access (OR: 1.8, 95\% CI 1.2-2.7), and have more unmet supportive care needs (OR: 1.05, 95\% CI 1.0-1.1). Top features wanted in a website, reported by more than 50\% of respondents, were a library of resources (n=893, 65.6\%), tools to support treatment decision making (n=815, 59.8\%), and tools to help navigate the prostate cancer journey (n=698, 51.2\%). Top three topics of information wanted in such a website were treatment options (n=916, 67.3\%), disease progression (n=904, 66.4\%), and management of side effects (n=858, 63\%). Conclusions: Over two-thirds of Canadian patients with prostate cancer surveyed use the internet as a source of health information about prostate cancer, but over half did not feel confident using information from the internet to make health decisions. Being an active information seeker, having confidence in using information from the internet to make health decisions, having broadband internet, and having more unmet supportive care needs were significantly associated with health-related internet use. Future work should examine electronic health literacy interventions as a means to boost men's confidence in using information from the internet and design websites that include information and features that help men navigate the prostate cancer journey and support treatment decision making and management of side effects. ", doi="10.2196/14241", url="http://www.jmir.org/2019/11/e14241/", url="http://www.ncbi.nlm.nih.gov/pubmed/31742561" } @Article{info:doi/10.2196/16690, author="Kushniruk, Andre", title="The Importance of Health Information on the Internet: How It Saved My Life and How it Can Save Yours", journal="J Med Internet Res", year="2019", month="Oct", day="27", volume="21", number="10", pages="e16690", keywords="patient journey", keywords="human factors", keywords="consumer health informatics", keywords="eHealth", keywords="digital health", keywords="participatory medicine", keywords="shared decision-making", keywords="cancer information", keywords="tongue cancer", doi="10.2196/16690", url="http://www.jmir.org/2019/10/e16690/", url="http://www.ncbi.nlm.nih.gov/pubmed/31661084" } @Article{info:doi/10.2196/14407, author="Nguyen, Hao Minh and Smets, A. Ellen M. and Bol, Nadine and Loos, F. Eug{\`e}ne and van Laarhoven, M. Hanneke W. and Geijsen, Debby and van Berge Henegouwen, I. Mark and Tytgat, J. Kristien M. A. and van Weert, M. Julia C.", title="Tailored Web-Based Information for Younger and Older Patients with Cancer: Randomized Controlled Trial of a Preparatory Educational Intervention on Patient Outcomes", journal="J Med Internet Res", year="2019", month="Oct", day="1", volume="21", number="10", pages="e14407", keywords="Web-based tailoring", keywords="internet", keywords="audiovisual media", keywords="patient education", keywords="cancer", keywords="aging", keywords="memory", keywords="anxiety", keywords="patient reported outcomes", keywords="patient participation", keywords="consultation", keywords="health communication", keywords="randomized controlled trial", abstract="Background: Many patients with cancer, including older patients (aged ?65 years), consult the Web to prepare for their doctor's visit. In particular, older patients have varying needs regarding the mode in which information is presented (eg, via textual, visual, or audiovisual modes) owing to age-related sensory (eg, impaired vision and hearing) and cognitive decline (eg, reduced processing speed). Therefore, Web-based information targeted at older patient populations is likely to be used and processed more effectively, and evaluated more positively, when tailored to age-related capabilities and preferences. This, in turn, may benefit patient outcomes. Objective: This randomized controlled trial tested the effects of a Web-based tailored educational intervention among newly diagnosed younger (<65 years) and older (?65 years) patients with cancer. We compared the intervention group who viewed a mode-tailored website (ie, enabling patients to tailor information using textual, visual, and audiovisual modes) with 3 control groups view a nontailored website (ie, text only, text with images, and text with videos). We examined website experience outcomes (ie, website satisfaction, website involvement, knowledge, anxiety, and communication self-efficacy) and consultation experience outcomes (ie, question asking during consultation, anxiety, and information recall). Methods: Patients from a multidisciplinary outpatient clinic (N=232) viewed a mode-tailored or nontailored website as preparation before their hospital consultations to discuss diagnosis and treatment. Data were collected before (T1), during (T2), and after (T3) visitation. Website experience outcomes were assessed with questionnaires (T1). Patients' question asking was coded from videotaped consultations, and anxiety was assessed through a questionnaire (T2). Telephone interviews were conducted to assess knowledge acquired from the website before (T1) and after consultation (T3), and information recall from the consultation (T3). Results: The preparatory website was well used across all conditions (mean 34 min). Younger patients viewing the mode-tailored website were more satisfied before consultation (P=.02) and reported lower anxiety after consultation (P=.046; vs text only). This pattern was not found in older patients. Mode tailoring yielded no other significant differences in patient outcomes. Regression analyses showed that website involvement (beta=.15; P=.03) and, to a lesser extent, website satisfaction (beta=.15; P=.05) positively associated with knowledge before consultation (T1). In turn, higher knowledge before consultation (beta=.39; P<.001), together with time on the website (beta=.21; P=.002; T1), predicted information recall from consultations (T3). Patients with higher knowledge before consultation (T1) also reported higher knowledge from the website afterward (T3; beta=.22; P=.003). Conclusions: Offering preparatory online information before consultations benefits information processing and patient outcomes of both younger and older newly diagnosed patients with cancer. Younger patients benefit even more when information is offered in a mode-tailored manner. We discuss the theoretical, methodological, and practical implications for patient-provider communication research in an electronic health era. Clinical Trial: Netherlands Trial Register NTR5904; https://www.trialregister.nl/trial/5750 ", doi="10.2196/14407", url="https://www.jmir.org/2019/10/e14407", url="http://www.ncbi.nlm.nih.gov/pubmed/31573911" } @Article{info:doi/10.2196/13240, author="Kobayashi, Rei and Ishizaki, Masato", title="Examining the Interaction Between Medical Information Seeking Online and Understanding: Exploratory Study", journal="JMIR Cancer", year="2019", month="Sep", day="24", volume="5", number="2", pages="e13240", keywords="consumer health informatics", keywords="information-seeking behavior", keywords="internet access", keywords="health communication", keywords="health literacy", abstract="Background: Online information seeking on medical topics by patients can have beneficial effects by helping them decide on treatment options and fostering better relationships with doctors. The quality of websites and processes of seeking information online have mostly been studied, with a focus on the accuracy and reliability of websites; however, few studies have examined the relationship between other aspects of quality and the processes of seeking medical information online. Objective: This exploratory study aimed to shed light on the quality of websites used for information seeking from the perspective of understanding medical information in combination with seeking it online. Methods: The study participants were 15 Japanese university students with no problem using the internet. A questionnaire survey about health literacy (47 items on a 4-point Likert scale) and information navigation skills on the internet (8 items on a 5-point Likert scale) was conducted before participants engaged in online information seeking and qualitative interviews. The students searched for information on a disease and its treatment. The websites viewed were gathered from search behavior recorded by software and browser logs. Follow-up interviews were conducted to elicit explanations from the participants about the assignments and their views of online information seeking. The explanations were evaluated by 55 health care professionals on a 3-point Likert scale and then assessed based on their comments and the participant interviews. Results: The mean age of the participants was 20.6 years (median 21; SD 1.06). All participants were able to access reliable websites with information relevant to the assignments. The mean ratings of the students' explanations were 108.6 (median 109; range=83-134) for the disease and 105.6 (median 104; range=87-117) for its treatment. The inter-rater reliability were 0.84 (95\% CI 0.77-0.90) and 0.95 (95\% CI 0.93-0.97), indicating good and excellent, respectively. The mean of the sum of the health literacy skills was 115.1 (median 115; range=80-166) and the mean for information navigation skills was 25.9 (median 26; range=17-36), respectively. Health literacy and information navigation skills were moderately correlated (r=0.54; 95\% CI 0.033-0.822; P=.04). Among the four stages of health literacy, understanding and appraising (r=0.53; 95\% CI 0.025-0.820; P=.04) were moderately correlated with information navigation skills (r=0.52; 95\% CI 0.013-0.816; P=.046). The participants had no difficulties operating and browsing the internet and considered medical and public institution websites to be reliable; however, due to unfamiliarity with medical terms, they had difficulties choosing a site from the results obtained and comparing and synthesizing information provided by different sites. They also looked for sites providing orderly information in plain language but provided explanations from sites that gave inadequate interpretations of information. Conclusions: This study revealed interactions between searching the internet for, and understanding, medical information by analyzing the processes of information seeking online, physicians' evaluations and comments about the participants' explanations, and the participants' perceptions. ", doi="10.2196/13240", url="http://cancer.jmir.org/2019/2/e13240/", url="http://www.ncbi.nlm.nih.gov/pubmed/31586366" } @Article{info:doi/10.2196/14187, author="Richards, Rebecca and Kinnersley, Paul and Brain, Kate and Staffurth, John and Wood, Fiona", title="The Preferences of Patients With Cancer Regarding Apps to Help Meet Their Illness-Related Information Needs: Qualitative Interview Study", journal="JMIR Mhealth Uhealth", year="2019", month="Jul", day="31", volume="7", number="7", pages="e14187", keywords="education, medical", keywords="medical information exchange", keywords="smartphone", keywords="mobile apps", abstract="Background: The shift from inpatient to outpatient and community cancer care means that more patients with cancer need to manage their condition at home, without the direct supervision of their clinician. Subsequently, research has reported that many patients with cancer have unmet information needs during their illness. Mobile devices, such as mobile phones and tablet computers, provide an opportunity to deliver information to patients remotely. Before designing an app intervention to help patients with cancer to meet their information needs, in-depth qualitative research is required to gain an understanding of the views of the target users. Objective: We aimed to develop an app intervention to help patients meet their illness-related information needs in noninpatient settings. This study explored the information needs of patients with cancer and their preferences for an app and desired app features. Specifically, the perceived acceptability of an app, desired app features, and the potential benefits and disadvantages of, and barriers to, an app were explored. Methods: Qualitative, one-on-one semistructured interviews were conducted with patients with urological, colorectal, breast, or gynecological cancers (N=23) across two hospitals in South Wales. Interviews were audio-taped, transcribed, and analyzed using a thematic analysis. Results: Findings indicated that barriers to information exchange and understanding in consultations, and identification of reliable information sources between consultations, appeared to contribute to patients' unmet information needs. Consequently, app feature suggestions included a question prompt list, a glossary of cancer terms, a resources feature, and a contacts feature. Anticipated benefits of this type of app included a more informed patient, improved quality of life, decreased anxiety, and increased confidence to participate in their care. The anticipated barriers to app use are likely to be temporary or can be minimized with regard to these findings during app development and implementation. Conclusions: This study highlights the desire of patients with cancer for an app intervention to help them meet their information needs during and between consultations with their clinicians. This study also highlights the anticipated acceptability and benefits of this type of intervention; however, further research is warranted. ", doi="10.2196/14187", url="http://mhealth.jmir.org/2019/7/e14187/", url="http://www.ncbi.nlm.nih.gov/pubmed/31368446" } @Article{info:doi/10.2196/cancer.9798, author="Camail, Roxane and Kenfack, Bruno and Tran, Lien Phuong and Viviano, Manuela and Tebeu, Pierre-Marie and Temogne, Liliane and Akaaboune, Mohamed and Tincho, Eveline and Mbobda, Joel and Catarino, Rosa and Vassilakos, Pierre and Petignat, Patrick", title="Benefit of Watching a Live Visual Inspection of the Cervix With Acetic Acid and Lugol Iodine on Women's Anxiety: Randomized Controlled Trial of an Educational Intervention Conducted in a Low-Resource Setting", journal="JMIR Cancer", year="2019", month="May", day="13", volume="5", number="1", pages="e9798", keywords="cervical cancer", keywords="papillomavirus infections", keywords="acetic acid", keywords="Lugol's iodine", keywords="anxiety", abstract="Background: Women undergoing pelvic examination for cervical cancer screening can experience periprocedural anxiety. Objective: The aim of this study was to assess the anxiety level experienced by women undergoing a visual inspection with acetic acid and Lugol iodine (VIA and VILI) examination, with or without watching the procedure on a digital screen. Methods: This prospective randomized study took place in the district of Dschang, Cameroon. A previous cervical cancer screening campaign tested women aged between 30 and 49 years for human papillomavirus (HPV). HPV-positive women were invited for the 12-month follow-up control visit, including a VIA/VILI examination. During that visit, we recruited women to participate in this study. Before the examination, participants were randomized in a 1:1 ratio to a control group (CG) and an intervention group (IG). Women in both groups underwent a pelvic examination and were verbally informed about the steps undertaken during the gynecological examination. The IG could also?watch it live on a tablet screen. Women's anxiety was assessed before and immediately after the examination, using the Spielberger State-Trait Anxiety Inventory (STAI). A paired t test was used to compare the mean STAI score for each question before and after VIA/VILI while a nonpaired, 2-sided t test was used to compare the mean differences of the STAI score between the 2 study groups. Results: A total of 122 women were randomized in the study; 4 of them were excluded as they did not undergo the pelvic examination, did not answer to the second STAI questionnaire because of personal reasons, or the cervix could not be properly visualized. Thus, the final sample size consisted of 118 patients of whom 58 women were assigned to the CG and 60 to the IG. The mean age was 39.1 (SD 5.2) years. Before the examination, the mean (SD) STAI score was 33.6 (SD 10.9) in the CG and 36.4 (SD 11.8) in the IG (P=.17). The STAI score after pelvic examination was significantly reduced for both groups (CG: 29.3 [SD 11.2]; IG: 28.5 [SD 12.0]). Overall, the difference of the STAI scores before and after the pelvic examination was lower in the CG (4.2 [SD 9.0]) than in the IG (7.9 [SD 14.3]), although the difference was not significant (P=.10). However, the women's emotional state, such as I feel secure and I feel strained, was improved in the IG as compared with the CG (CG: P=.01; IG: P=.007). Conclusions: Watching the VIA/VILI procedure in real time improved the women's emotional state but did not reduce the periprocedural anxiety measured by the STAI score. Furthermore, larger studies should assess women's satisfaction with watching their pelvic examination in real time to determine whether this tool could be included in VIA/VILI routine practice. Trial Registration: ClinicalTrials.gov NCT02945111; http://clinicaltrials.gov/ct2/show/NCT02945111 ", doi="10.2196/cancer.9798", url="http://cancer.jmir.org/2019/1/e9798/", url="http://www.ncbi.nlm.nih.gov/pubmed/31094335" } @Article{info:doi/10.2196/12103, author="Mohamad Marzuki, Fadhil Muhamad and Yaacob, Azwany Nor and bin Yaacob, Majdi Najib and Abu Hassan, Radzi Muhammad and Ahmad, Bariyah Shahrul", title="Usable Mobile App for Community Education on Colorectal Cancer: Development Process and Usability Study", journal="JMIR Hum Factors", year="2019", month="Apr", day="16", volume="6", number="2", pages="e12103", keywords="colorectal cancer", keywords="mobile app", keywords="development", keywords="mHealth", abstract="Background: Participation in colorectal cancer screening is still low among Malaysians despite the increasing trend of incidence, with more than half of the new cases being detected in the advanced stages. Knowledge improvement might increase screening participation and thus improve the chances of disease detection. With the advancement of communication technology, people nowadays prefer to read from their mobile phone using a Web browser or mobile apps compared with the traditional printed material. Therefore, health education and promotion should adapt this behavior change in educating the community. Objective: This study aimed to document the process of designing and developing a mobile app for community education on colorectal cancer and assess the usability of the prototype. Methods: The nominal group technique (NGT) was used for the content development of the mobile app. NGT involving community educationists and clinicians combined with community representatives as the target users identified relevant health information and communication strategies including features for a user-friendly mobile app. The prototype was developed using framework Ionic 1, based on the Apache Cordova and Angular JS (Google). It was published in the Google Play store. In total, 50 mobile phone users aged 50 years and above and who had never been diagnosed with any type of cancer were invited to download and use the app. They were asked to assess the usability of the app using the validated Malay version of System Usability Scale Questionnaire for the Assessment of Mobile Apps questionnaire. The One-sample t test was used to assess the usability score with a cut-off value of 68 for the usable mobile app. Results: The Colorectal Cancer Awareness Application (ColorApp) was successfully developed in the local Malay language. The NGT discussion had suggested 6 main menus in the ColorApp prototype, which are Introduction, Sign and Symptoms, Risk Factors, Preventive Measures, Colorectal Cancer Screening Program, and immunochemical fecal occult blood test kit. A total of 2 additional artificial intelligence properties menus were added to allow user-ColorApp interaction: Analyze Your Status and ColorApp Calculator. The prototype has been published in the Google Play store. The mean usability score was 72 (SD 11.52), which indicates that ColorApp is a usable mobile app, and it can be used as a tool for community education on colorectal cancer. Conclusions: ColorApp mobile app can be used as a user-friendly tool for community education on colorectal cancer. ", doi="10.2196/12103", url="http://humanfactors.jmir.org/2019/2/e12103/", url="http://www.ncbi.nlm.nih.gov/pubmed/30990454" } @Article{info:doi/10.2196/12480, author="Lama, Yuki and Hu, Dian and Jamison, Amelia and Quinn, Crouse Sandra and Broniatowski, A. David", title="Characterizing Trends in Human Papillomavirus Vaccine Discourse on Reddit (2007-2015): An Observational Study", journal="JMIR Public Health Surveill", year="2019", month="Mar", day="18", volume="5", number="1", pages="e12480", keywords="papillomavirus infections", keywords="prevention \& control", keywords="cancer prevention", keywords="cervical cancer", keywords="HPV", keywords="vaccination", keywords="papillomavirus vaccines", keywords="immunology", keywords="administration \& dosage", keywords="social media", keywords="health communication", keywords="infodemiology", abstract="Background: Despite the introduction of the human papillomavirus (HPV) vaccination as a preventive measure in 2006 for cervical and other cancers, uptake rates remain suboptimal, resulting in preventable cancer mortality. Social media, widely used for information seeking, can influence users' knowledge and attitudes regarding HPV vaccination. Little is known regarding attitudes related to HPV vaccination on Reddit (a popular news aggregation site and online community), particularly related to cancer risk and sexual activity. Examining HPV vaccine--related messages on Reddit may provide insight into how HPV discussions are characterized on forums online and influence decision making related to vaccination. Objective: We observed how the HPV vaccine is characterized on Reddit over time and by user gender. Specifically, this study aimed to determine (1) if Reddit messages are more related to cancer risks or sexual behavior and (2) what other HPV vaccine--related discussion topics appear on Reddit. Methods: We gathered all public Reddit comments from January 2007 to September 2015. We manually annotated 400 messages to generate keywords and identify salient themes. We then measured the similarity between each comment and lists of keywords associated with sexual behavior and cancer risk using Latent Semantic Analysis (LSA). Next, we used Latent Dirichlet Allocation (LDA) to characterize remaining topics within the Reddit data. Results: We analyzed 22,729 messages containing the strings hpv or human papillomavirus and vaccin. LSA findings show that HPV vaccine discussions are significantly more related to cancer compared with sexual behavior from 2008 to 2015 (P<.001). We did not find a significant difference between genders in discussions of cancer and sexual activity (P>.05). LDA analyses demonstrated that although topics related to cancer risk and sexual activity were both frequently discussed (16.1\% and 14.5\% of word tokens, respectively), the majority of online discussions featured other topics. The most frequently discussed topic was politics associated with the vaccine (17.2\%). Other topics included HPV disease and/or immunity (13.5\%), the HPV vaccine schedule (11.5\%), HPV vaccine side effects (9.7\%), hyperlinks to outside sources (9.1\%), and the risks and benefit of HPV vaccination (8.5\%). Conclusions: Reddit discourse on HPV vaccine encompasses a broad range of topics among men and women, with HPV political debates and cancer risk making up the plurality of the discussion. Our findings demonstrated that women and men both discussed HPV, highlighting that Reddit users do not perceive HPV as an issue that only pertains to women. Given the increasing use of social media as a source of health information, these results can inform the development of targeted online health communication strategies to promote HPV vaccination to young adult users of Reddit. Analyzing online discussions on Reddit can inform health communication efforts by identifying relevant, important HPV-related topics among online communities. ", doi="10.2196/12480", url="http://publichealth.jmir.org/2019/1/e12480/" } @Article{info:doi/10.2196/10348, author="George, C. Goldy and Iwuanyanwu, C. Eucharia and Buford, S. Adrianna and Piha-Paul, A. Sarina and Subbiah, Vivek and Fu, Siqing and Karp, D. Daniel and Pant, Shubham and Hinojosa, O. Christina and Hess, R. Kenneth and Cleeland, S. Charles and Bernstam, V. Elmer and Meric-Bernstam, Funda and Hong, S. David", title="Cancer-Related Internet Use and Its Association With Patient Decision Making and Trust in Physicians Among Patients in an Early Drug Development Clinic: A Questionnaire-Based Cross-Sectional Observational Study", journal="J Med Internet Res", year="2019", month="Mar", day="14", volume="21", number="3", pages="e10348", keywords="cancer", keywords="clinical trial", keywords="doctor", keywords="early-phase clinical trial", keywords="internet", keywords="patient", keywords="physician", keywords="patient-physician relationship", keywords="symptoms", abstract="Background: The role of cancer-related internet use on the patient-physician relationship has not been adequately explored among patients who are cancer-related internet users (CIUs) in early-phase clinical trial clinics. Objective: We examined the association between cancer-related internet use and the patient-physician relationship and decision making among CIUs in an early drug development clinic. Methods: Of 291 Phase I clinic patients who completed a questionnaire on internet use, 179 were CIUs. Generations were defined by the year of patient's birth: ``millennials'' (after 1990) and ``Generation X/Y'' (1965-1990) grouped as ``Millennials or Generation X/Y''; ``Baby Boomers'' (1946-1964); and ``Greatest or Silent Generation'' (1945 and earlier). Statistical analyses included the Wilcoxon matched-pairs signed-rank test and the Mann-Whitney U test. Results: CIUs were 52\% (94/179) female, 44\% (78/179) were older than 60 years, and 60\% (108/179) had household incomes exceeding US \$60,000. The sources of information on cancer and clinical trials included physicians (171/179, 96\%), the internet (159/179, 89\%), and other clinical trial personnel (121/179, 68\%). For the overall sample and each generation, the median values for trust in referring and Phase I clinical trial physicians among early drug development clinic CIUs were 5 on a 0-5 scale, with 5 indicating ``complete trust.'' CIUs' trust in their referring (5) and phase 1 (5) physicians was higher than CIUs' trust in Web-based cancer-related information (3; P<.001 for both). CIUs who reported visiting the National Cancer Institute (NCI) website, NCI.org, to learn about cancer reported higher levels of trust in Web-based cancer-related information than CIUs who did not use the NCI website (P=.02). Approximately half of CIUs discussed internet information with their doctor. Only 14\% (23/165) of CIUs had asked their physician to recommend cancer-related websites, and 24\% (35/144) of CIUs reported at least occasional conflict between their physician's advice and Web-based information. Conclusions: Despite the plethora of websites related to cancer and cancer clinical trials, patients in early-phase clinical trial settings trust their physicians more than Web-based information. Cancer-related organizations should provide regularly updated links to trustworthy websites with cancer and clinical trial information for patients and providers and educate providers on reliable cancer websites so that they can better direct their patients to appropriate internet content. ", doi="10.2196/10348", url="https://www.jmir.org/2019/3/e10348/", url="http://www.ncbi.nlm.nih.gov/pubmed/30869638" } @Article{info:doi/10.2196/10932, author="Moradian, Saeed and Krzyzanowska, K. Monika and Maguire, Roma and Morita, P. Plinio and Kukreti, Vishal and Avery, Jonathan and Liu, Geoffrey and Cafazzo, Joseph and Howell, Doris", title="Usability Evaluation of a Mobile Phone--Based System for Remote Monitoring and Management of Chemotherapy-Related Side Effects in Cancer Patients: Mixed-Methods Study", journal="JMIR Cancer", year="2018", month="Dec", day="21", volume="4", number="2", pages="e10932", keywords="mobile apps", keywords="mobile health", keywords="mobile phone", keywords="patient-centered care", keywords="patient remote monitoring", keywords="self-care", keywords="symptom management", keywords="usability testing", abstract="Background: As most chemotherapy is administered in the outpatient setting, patients are required to manage related side effects at home without direct support from health professionals. The Advanced Symptom Management System (ASyMS) has been developed to facilitate the remote monitoring and management of chemotherapy-related toxicity in patients with cancer, using patient-reported outcomes questionnaires and a clinician alerting system. Objective: This study aims to evaluate the usability of the ASyMS, a mobile phone--based technology, from the perspective of Canadian patients with cancer receiving chemotherapy to identify existing design, functionality, and usability issues and elicit their views, experiences, and satisfaction with the ASyMS. Methods: We used a mixed-method approach to data collection with user-based testing, a think-aloud technique, semistructured interviews, and short answer questionnaires with a purposive sample of 10 patients with cancer. Participants attended usability testing sessions at the Centre for Global eHealth Innovation, University Health Network, and performed specific tasks on the ASyMS device. The test was videorecorded and each task was timed during the test. After the usability sessions, participants completed a posttest questionnaire and participated in a semistructured qualitative interview. A thematic analysis was used to code and categorize the identified issues into themes that summarized the type and frequency of occurrence. Results: The thematic analysis generated 3 overarching themes as follows: ASyMS user-friendliness; usefulness of ASyMS (content quality and richness); and intention to use. Results from the posttest questionnaire indicated that 80\% (8/10) of participants had great motivation to use the ASyMS, 70\% (7/10) had positive perceptions of the successful use of the ASyMS, and all (10/10, 100\%) had a positive attitude toward using the ASyMS in the future. Most identified design and functionality issues were related to the navigation of the ASyMS device and a desire for a more attractive design with advanced functionality and features. The main general design recommendations were as follows: enhance the readability of the screen; implement advance options (eg, search option); and support better navigation. Conclusions: The ASyMS has shown positive perceptions of patients in usability testing and qualitative interviews. An evaluation of the effects of the ASyMS on symptom outcomes in a clinical trial is needed. ", doi="10.2196/10932", url="http://cancer.jmir.org/2018/2/e10932/", url="http://www.ncbi.nlm.nih.gov/pubmed/30578238" } @Article{info:doi/10.2196/11073, author="Biancovilli, Priscila and Jurberg, Claudia", title="How to Optimize Health Messages About Cancer on Facebook: Mixed-Methods Study", journal="JMIR Cancer", year="2018", month="Dec", day="18", volume="4", number="2", pages="e11073", keywords="cancer", keywords="content analysis", keywords="Facebook", keywords="health", keywords="software", abstract="Background: Incidence rate of cancer is increasing worldwide, with longer life expectancy being one of the main causes. Yet, between 30\% and 50\% of cancer cases are preventable, and early detection contributes to a better prognosis. This makes health communication strategies essential. Facebook, the world's most used social networking site in 2017 and 2018, can be a useful tool for disseminating powerful messages on health promotion, prevention, and early detection. Objective: We aimed to (1) offer ways of optimizing health messages about cancer on Facebook, focusing on topics, such as risk factors, prevention, treatment, early diagnosis, and cure, and (2) investigate which aspects of these messages generate greater engagement. Methods: To verify what generates greater engagement in topics related to cancer on Facebook, we analyzed 16 Brazilian pages with the main theme of cancer. We performed a manual analysis of texts, content, and engagement rates. Finally, we developed a software program to operationalize the analysis of Facebook posts. The tool we devised aims to automate the analysis of any Facebook page with cancer as the main theme. Results: We analyzed 712 posts over a 1-month period. We divided the posts into the following 8 categories: ``Testimonies or real-life stories,'' ``Solidarity,'' ``Anniversaries,'' ``Science and health,'' ``Events,'' ``Institutional,'' ``Risk factors,'' and ``Beauty.'' The pages were also organized into groups according to the type of profile to which they belonged (ie, hospitals or foundations, informative, nongovernmental organizations, and personal pages).The results showed that the categories generating greater engagement in Brazil were not those with the highest percentage of cancer-related content. For instance, in the ``Informative'' group the ``Testimonies or real-life stories'' category generated an engagement of 79.5\%. However, only 9.5\% (25/261) of the content within the relevant time period dealt with such topics. Another example concerns the category ``Science and health.'' Despite being the one with the highest number of posts (129/261, 49.4\%), it scored 5th in terms of engagement. This investigation served as the basis for the development of a tool designed to automate the analysis of Facebook pages. The list of categories and keywords generated by this analysis was employed to feed the system, which was then able to categorize posts appearing on a Facebook page. We tested the system on 163 posts and only 34 were classified incorrectly, which amounts to a 20.8\% error rate (79.2\% accuracy). Conclusions: The analysis we conducted by categorizing posts and calculating engagement rates shows that the potential of Facebook pages is often underutilized. This occurs because the categories that generate the greatest engagement are often not those most frequently used. The software developed in this research may help administrators of cancer-related pages analyze their posts more easily and increase public interest as a result. ", doi="10.2196/11073", url="http://cancer.jmir.org/2018/2/e11073/", url="http://www.ncbi.nlm.nih.gov/pubmed/30563821" } @Article{info:doi/10.2196/10031, author="Ogasawara, Ryo and Katsumata, Noriyuki and Toyooka, Tatsushi and Akaishi, Yuko and Yokoyama, Takaaki and Kadokura, Gemmu", title="Reliability of Cancer Treatment Information on the Internet: Observational Study", journal="JMIR Cancer", year="2018", month="Dec", day="17", volume="4", number="2", pages="e10031", keywords="internet", keywords="cancer treatment", keywords="clinical practice guideline", keywords="mobile phone", abstract="Background: Finding the correct medical information in a flood of information from the internet is a significant issue for patients with cancer. Objective: We investigated the reliability of the information on cancer treatment methods available on the internet based on an evaluation by medical oncologists, medical students, and cancer survivors. Methods: Using Google and Yahoo as the search engines, we carried out the information search using 2 keywords, ``cancer treatment'' and ``cancer cure,'' and the top 20 information sites were identified. A similar search was conducted on 5 types of cancer. The reliability of the information presented was rated on a 3-level scale (A, B, or C). Level A referred to reliable sites (providing information complying with the clinical practice guidelines for various types of cancer), Level B included sites not falling under either Level A or Level C, and Level C comprised dangerous or harmful sites (providing information on treatment not approved by the regulatory authority in Japan and bombastic advertisements without any relevant clinical evidence). The evaluation was conducted by medical oncologists, medical students, and cancer survivors. The consistency of the information reliability level rating between the medical students or cancer survivors with that of the medical oncologists was assessed by using the kappa value. Results: A total of 247 sites were evaluated for reliability. The ratings provided by the medical students' group were as follows: Level A, 12.1\% (30/247); Level B, 56.3\% (139/247); and Level C, 31.6\% (78/247). The ratings provided by the cancer survivors' group were as follows: Level A, 16.8\% (41/244); Level B, 44.7\% (109/244); and Level C, 38.5\% (94/244). The ratings provided by the oncologists' group were as follows: Level A, 10.1\% (25/247); Level B, 51.4\% (127/247); and Level C, 38.5\% (95/247). The intergroup rating consistency between the medical students' group and oncologists' group was 87.4\% (216/247, kappa=0.77) and that between the cancer survivors' group and oncologists' group was 76.2\% (186/244, kappa=0.61). Conclusions: Of the investigated sites providing information on cancer treatment on the internet, the percentage of sites that seemed to provide harmful information was much higher than that of sites providing reliable information. The reliability level rating was highly consistent between the medical students' group and the medical oncologists' group and also between the cancer survivors' group and the medical oncologists' group. ", doi="10.2196/10031", url="http://cancer.jmir.org/2018/2/e10031/", url="http://www.ncbi.nlm.nih.gov/pubmed/30559090" } @Article{info:doi/10.2196/10026, author="Richards, Rebecca and Kinnersley, Paul and Brain, Kate and McCutchan, Grace and Staffurth, John and Wood, Fiona", title="Use of Mobile Devices to Help Cancer Patients Meet Their Information Needs in Non-Inpatient Settings: Systematic Review", journal="JMIR Mhealth Uhealth", year="2018", month="Dec", day="14", volume="6", number="12", pages="e10026", keywords="cell phone", keywords="smartphone", keywords="computers, handheld", keywords="cancer", keywords="neoplasms", keywords="patients", keywords="information dissemination", keywords="consumer health information", abstract="Background: The shift from inpatient to outpatient cancer care means that patients are now required to manage their condition at home, away from regular supervision by clinicians. Subsequently, research has consistently reported that many patients with cancer have unmet information needs during their illness. Mobile devices, such as mobile phones and tablet computers, provide an opportunity to deliver information to patients remotely. To date, no systematic reviews have evaluated how mobile devices have been used specifically to help patients meet to their information needs. Objective: A systematic review was conducted to identify studies that describe the use of mobile interventions to enable patients with cancer meet their cancer-related information needs in non-inpatient settings, and to describe the effects and feasibility of these interventions. Methods: MEDLINE, Embase, and PsycINFO databases were searched up until January 2017. Search terms related to ``mobile devices,'' ``information needs,'' and ``cancer'' were used. There were no restrictions on study type in order to be as inclusive as possible. Study participants were patients with cancer undergoing treatment. Interventions had to be delivered by a mobile or handheld device, attempt to meet patients' cancer-related information needs, and be for use in non-inpatient settings. Critical Appraisal Skills Programme checklists were used to assess the methodological quality of included studies. A narrative synthesis was performed and findings were organized by common themes found across studies. Results: The initial search yielded 1020 results. We included 23 articles describing 20 studies. Interventions aimed to improve the monitoring and management of treatment-related symptoms (17/20, 85\%), directly increase patients' knowledge related to their condition (2/20, 10\%), and improve communication of symptoms to clinicians in consultations (1/20, 5\%). Studies focused on adult (17/20; age range 24-87 years) and adolescent (3/20; age range 8-18 years) patients. Sample sizes ranged from 4-125, with 13 studies having 25 participants or fewer. Most studies were conducted in the United Kingdom (12/20, 52\%) or United States (7/20, 30\%). Of the 23 articles included, 12 were of medium quality, 9 of poor quality, and 2 of good quality. Overall, interventions were reported to be acceptable and perceived as useful and easy to use. Few technical problems were encountered. Adherence was generally consistent and high (periods ranged from 5 days to 6 months). However, there was considerable variation in use of intervention components within and between studies. Reported benefits of the interventions included improved symptom management, patient empowerment, and improved clinician-patient communication, although mixed findings were reported for patients' health-related quality of life and anxiety. Conclusions: The current review highlighted that mobile interventions for patients with cancer are only meeting treatment or symptom-related information needs. There were no interventions designed to meet patients' full range of cancer-related information needs, from information on psychological support to how to manage finances during cancer, and the long-term effects of treatment. More comprehensive interventions are required for patients to meet their information needs when managing their condition in non-inpatient settings. Controlled evaluations are needed to further determine the effectiveness of these types of intervention. ", doi="10.2196/10026", url="https://mhealth.jmir.org/2018/12/e10026/", url="http://www.ncbi.nlm.nih.gov/pubmed/30552082" } @Article{info:doi/10.2196/10676, author="Br{\"u}tting, Julia and Steeb, Theresa and Reinhardt, Lydia and Berking, Carola and Meier, Friedegund", title="Exploring the Most Visible German Websites on Melanoma Immunotherapy: A Web-Based Analysis", journal="JMIR Cancer", year="2018", month="Dec", day="13", volume="4", number="2", pages="e10676", keywords="melanoma", keywords="immunotherapy", keywords="internet", keywords="patient education", keywords="quality", keywords="readability", keywords="websites", keywords="reliability", keywords="information", abstract="Background: Patients diagnosed with melanoma frequently search the internet for treatment information, including novel and complex immunotherapy. However, health literacy is limited among half of the German population, and no assessment of websites on melanoma treatment has been performed so far. Objective: The aim of this study was to identify and assess the most visible websites in German language on melanoma immunotherapy. Methods: In accordance with the common Web-based information-seeking behavior of patients with cancer, the first 20 hits on Google, Yahoo, and Bing were searched for combinations of German synonyms for ``melanoma'' and ``immunotherapy'' in July 2017. Websites that met our predefined eligibility criteria were considered for assessment. Three reviewers independently assessed their quality by using the established DISCERN tool and by checking the presence of quality certification. Usability and reliability were evaluated by the LIDA tool and understandability by the Patient Education Materials Assessment Tool (PEMAT). The Flesch Reading Ease Score (FRES) was calculated to estimate the readability. The ALEXA and SISTRIX tools were used to investigate the websites' popularity and visibility. The interrater agreement was determined by calculating Cronbach alpha. Subgroup differences were identified by t test, U test, or one-way analysis of variance. Results: Of 480 hits, 45 single websites from 30 domains were assessed. Only 2 website domains displayed a German quality certification. The average assessment scores, mean (SD), were as follows: DISCERN, 48 (7.6); LIDA (usability), 40 (2.0); LIDA (reliability), 10 (1.6); PEMAT, 69\% (16\%); and FRES, 17 (14), indicating mediocre quality, good usability, and understandability but low reliability and an even very low readability of the included individual websites. SISTRIX scores ranged from 0 to 6872 and ALEXA scores ranged from 17 to 192,675, indicating heterogeneity of the visibility and popularity of German website domains providing information on melanoma immunotherapy. Conclusions: Optimization of the most accessible German websites on melanoma immunotherapy is desirable. Especially, simplification of the readability of information and further adaption to reliability criteria are required to support the education of patients with melanoma and laypersons, and to enhance transparency. ", doi="10.2196/10676", url="https://cancer.jmir.org/2018/2/e10676/", url="http://www.ncbi.nlm.nih.gov/pubmed/30545808" } @Article{info:doi/10.2196/11006, author="Collado-Borrell, Roberto and Escudero-Vilaplana, Vicente and Calles, Antonio and Garcia-Martin, Estela and Marzal-Alfaro, Belen and Gonzalez-Haba, Eva and Herranz-Alonso, Ana and Sanjurjo-Saez, Maria", title="Oncology Patient Interest in the Use of New Technologies to Manage Their Disease: Cross-Sectional Survey", journal="J Med Internet Res", year="2018", month="Oct", day="23", volume="20", number="10", pages="e11006", keywords="eHealth", keywords="app", keywords="information and communication technologies", keywords="oncology patient", abstract="Background: Information and communication technologies (ICTs) in oncology can revolutionize the medical care of cancer patients. ICTs can promote patients' empowerment and real-time disease monitoring. There is limited information about the impact of ICTs in cancer patients or their level of interest in using these tools for greater management of their condition. Objective: This study aimed to understand the ICT usage profile in hematology-oncology patients to identify their needs and determine their level of interest in these technologies as a means of managing their disease. Methods: A 28-item questionnaire was drawn up by a multidisciplinary team including pharmacists and oncologists. The questions were organized into 3 blocks, which were as follows: block A---sociodemographic characteristics; block B---use of ICTs when searching for health-related information; and block C---usage preferences for health apps. Hematology-oncology patients receiving treatment between May and July 2017 were included. A paper copy of the questionnaire was handed over to patients in either the day hospital or the pharmaceutical care consultancy in pharmacy services. Results: A total of 650 questionnaires were handed out, with a participation of 94.0\% (611/650). Patient sociodemographic characteristics were as follows: mean age was 57.8 years (age range: 19-91). Of 611 participants, 40.7\% (249/611) had a university education, and 45.1\% (276/611) of participants reported their overall state of health to be good. Results from use of ICTs when searching for health-related information were as follows: 87.1\% (532/611) of participants were interested in being informed about health-related matters. Of all participants, 75.5\% (532/611) sought information from health professionals and 61.3\% (375/611) on the internet. Before going to their doctor's appointment, 21.8\% (133/611) of patients looked up information about their disease or treatment on the internet. This access to the internet rose to 50.9\% (311/611) after their first medical appointment with their oncologist. Usage preferences for health apps were as follows: 82.7\% (505/611) had a smartphone, whereas 20.3\% (124/611) had a health app installed. Overall, 81.5\% (498/611) would use an app if their health professional recommended it to them, but 39.6\% (242/611) were not willing to pay for it. Conclusions: The hematology-oncology patients showed a great deal of interest in searching for health-related information by means of ICTs, especially using smartphones and apps. The issues that drew the most interest in terms of apps were appointment management, advice on disease management, and communication with health professionals. Free access to these features and the recommendation by a health professional are important factors when it comes to their use. Therefore, the health care provider is a key element in the recommendation of ICTs, providing their knowledge and experience concerning their correct usage. ", doi="10.2196/11006", url="http://www.jmir.org/2018/10/e11006/", url="http://www.ncbi.nlm.nih.gov/pubmed/30355554" } @Article{info:doi/10.2196/11515, author="Chen, Liang and Wang, Xiaohui and Peng, Tai-Quan", title="Nature and Diffusion of Gynecologic Cancer--Related Misinformation on Social Media: Analysis of Tweets", journal="J Med Internet Res", year="2018", month="Oct", day="16", volume="20", number="10", pages="e11515", keywords="social media", keywords="breast cancer", keywords="cervical cancer", keywords="misinformation", keywords="diffusion", keywords="China", abstract="Background: Over the last two decades, the incidence and mortality rates of gynecologic cancers have increased at a constant rate in China. Gynecologic cancers have become one of the most serious threats to women's health in China. With the widespread use of social media, an increasing number of individuals have employed social media to produce, seek, and share cancer-related information. However, health information on social media is not always accurate. Health, and especially cancer-related, misinformation has been widely spread on social media, which can affect individuals' attitudinal and behavioral responses to cancer. Objective: The aim of this study was to examine the nature and diffusion of gynecologic cancer--related misinformation on Weibo, the Chinese equivalent of Twitter. Methods: A total of 2691 tweets related to 2 gynecologic cancers---breast cancer and cervical cancer---posted on Weibo from June 2015 to June 2016 were extracted using the Python Web Crawler. Two medical school graduate students with expertise in gynecologic diseases were recruited to code the tweets to differentiate between true information and misinformation as well as to identify the types of falsehoods. The diffusion characteristics of gynecologic cancer--related misinformation were compared with those of the true information. Results: While most of the gynecologic cancer--related tweets provided medically accurate information, approximately 30\% of them were found to contain misinformation. Furthermore, it was found that tweets about cancer treatment contained a higher percentage of misinformation than prevention-related tweets. Nevertheless, the prevention-related misinformation diffused significantly more broadly and deeply than true information on social media. Conclusions: The findings of this study suggest the need for controlling and reducing the cancer-related misinformation on social media with the efforts from both service providers and medical professionals. More specifically, it is important to correct falsehoods related to the prevention of gynecologic cancers on social media and increase individuals' capacity to assess the veracity of Web-based information to curb the spread and thus minimize the consequences of cancer-related misinformation. ", doi="10.2196/11515", url="http://www.jmir.org/2018/10/e11515/", url="http://www.ncbi.nlm.nih.gov/pubmed/30327289" } @Article{info:doi/10.2196/10060, author="Hillyer, Clarke Grace and MacLean, A. Sarah and Beauchemin, Melissa and Basch, H. Corey and Schmitt, M. Karen and Segall, Leslie and Kelsen, Moshe and Brogan, L. Frances and Schwartz, K. Gary", title="YouTube Videos as a Source of Information About Clinical Trials: Observational Study", journal="JMIR Cancer", year="2018", month="Jun", day="26", volume="4", number="1", pages="e10060", keywords="clinical trial", keywords="cancer clinical trial", keywords="social media", keywords="internet", keywords="YouTube videos", keywords="health information", abstract="Background: Clinical trials are essential to the advancement of cancer treatment but fewer than 5\% of adult cancer patients enroll in a trial. A commonly cited barrier to participation is the lack of understanding about clinical trials. Objective: Since the internet is a popular source of health-related information and YouTube is the second most visited website in the world, we examined the content of the top 115 YouTube videos about clinical trials to evaluate clinical trial information available through this medium. Methods: YouTube videos posted prior to March 2017 were searched using selected keywords. A snowballing technique was used to identify videos wherein sequential screening of the autofill search results for each set of keywords was conducted. Video characteristics (eg, number of views and video length) were recorded. The content was broadly grouped as related to purpose, phases, design, safety and ethics, and participant considerations. Stepwise multivariable logistic regression analysis was conducted to assess associations between video type (cancer vs noncancer) and video characteristics and content. Results: In total, 115 videos were reviewed. Of these, 46/115 (40.0\%) were cancer clinical trials videos and 69/115 (60.0\%) were noncancer/general clinical trial videos. Most videos were created by health care organizations/cancer centers (34/115, 29.6\%), were oriented toward patients (67/115, 58.3\%) and the general public (68/115, 59.1\%), and were informational (79/115, 68.7\%); altruism was a common theme (31/115, 27.0\%). Compared with noncancer videos, cancer clinical trials videos more frequently used an affective communication style and mentioned the benefits of participation. Cancer clinical trial videos were also much more likely to raise the issue of costs associated with participation (odds ratio [OR] 5.93, 95\% CI 1.15-29.46) and advise patients to communicate with their physician about cancer clinical trials (OR 4.94, 95\% CI 1.39-17.56). Conclusions: Collectively, YouTube clinical trial videos provided information on many aspects of trials; however, individual videos tended to focus on selected topics with varying levels of detail. Cancer clinical trial videos were more emotional in style and positive in tone and provided information on the important topics of cost and communication. Patients are encouraged to verify and supplement YouTube video information in consultations with their health care professionals to obtain a full and accurate picture of cancer clinical trials to make an adequately informed decision about participation. ", doi="10.2196/10060", url="http://cancer.jmir.org/2018/1/e10060/", url="http://www.ncbi.nlm.nih.gov/pubmed/29945855" } @Article{info:doi/10.2196/resprot.7523, author="Marsolo, Keith and Shuman, William and Nix, Jeremy and Morrison, F. Caroline and Mullins, L. Larry and Pai, LH Ahna", title="Reducing Parental Uncertainty Around Childhood Cancer: Implementation Decisions and Design Trade-Offs in Developing an Electronic Health Record-Linked Mobile App", journal="JMIR Res Protoc", year="2017", month="Jun", day="26", volume="6", number="6", pages="e122", keywords="electronic health records", keywords="mobile apps", keywords="uncertainty", keywords="ethnographic design", abstract="Background: Parents of children newly diagnosed with cancer are confronted with multiple stressors that place them at risk for significant psychological distress. One strategy that has been shown to help reduce uncertainty is the provision of basic information; however, families of newly diagnosed cancer patients are often bombarded with educational material. Technology has the potential to help families manage their informational needs and move towards normalization. Objective: The aim of this study was to create a mobile app that pulls together data from both the electronic health record (EHR) and vetted external information resources to provide tailored information to parents of newly diagnosed children as one method to reduce the uncertainty around their child's illness. This app was developed to be used by families in a National Institutes of Health (NIH)-funded randomized controlled trial (RCT) aimed at decreasing uncertainty and the subsequent psychological distress. Methods: A 2-phase qualitative study was conducted to elicit the features and content of the mobile app based on the needs and experience of parents of children newly diagnosed with cancer and their providers. Example functions include the ability to view laboratory results, look up appointments, and to access educational material. Educational material was obtained from databases maintained by the National Cancer Institute (NCI) as well as from groups like the Children's Oncology Group (COG) and care teams within Cincinnati Children's Hospital Medical Center (CCHMC). The use of EHR-based Web services was explored to allow data like laboratory results to be retrieved in real-time. Results: The ethnographic design process resulted in a framework that divided the content of the mobile app into the following 4 sections: (1) information about the patient's current treatment and other data from the EHR; (2) educational background material; (3) a calendar to view upcoming appointments at their medical center; and (4) a section where participants in the RCT document the study data. Integration with the NCI databases was straightforward; however, accessing the EHR Web services posed a challenge, though the roadblocks were not technical in nature. The lack of a formal, end-to-end institutional process for requesting Web service access and a mechanism to shepherd the request through all stages of implementation proved to be the biggest barrier. Conclusions: We successfully deployed a mobile app with a custom user interface that can integrate with the EHR to retrieve laboratory results and appointment information using vendor-provided Web services. Developers should expect to face hurdles when integrating with the EHR, but many of them can be addressed with frequent communication and thorough documentation. Executive sponsorship is also a key factor for success. Trial Registration: ClinicalTrials.gov NCT02505165; https://clinicaltrials.gov/ct2/show/NCT02505165 (Archived by WebCite at http://www.Webcitation.org/6r9ZSUgoT) ", doi="10.2196/resprot.7523", url="http://www.researchprotocols.org/2017/6/e122/", url="http://www.ncbi.nlm.nih.gov/pubmed/28652227" } @Article{info:doi/10.2196/jmir.7508, author="Huesch, Marco and Chetlen, Alison and Segel, Joel and Schetter, Susann", title="Frequencies of Private Mentions and Sharing of Mammography and Breast Cancer Terms on Facebook: A Pilot Study", journal="J Med Internet Res", year="2017", month="Jun", day="09", volume="19", number="6", pages="e201", keywords="Facebook", keywords="online social network", keywords="social media", keywords="breast cancer screening", keywords="mammography", keywords="user comments", keywords="websites", keywords="links", abstract="Background: The most popular social networking site in the United States is Facebook, an online forum where circles of friends create, share, and interact with each other's content in a nonpublic way. Objective: Our objectives were to understand (1) the most commonly used terms and phrases relating to breast cancer screening, (2) the most commonly shared website links that other women interacted with, and (3) the most commonly shared website links, by age groups. Methods: We used a novel proprietary tool from Facebook to analyze all of the more than 1.7 million unique interactions (comments on stories, reshares, and emoji reactions) and stories associated with breast cancer screening keywords that were generated by more than 1.1 million unique female Facebook users over the 1 month between November 15 and December 15, 2016. We report frequency distributions of the most popular shared Web content by age group and keywords. Results: On average, each of 59,000 unique stories during the month was reshared 1.5 times, commented on nearly 8 times, and reacted to more than 20 times by other users. Posted stories were most often authored by women aged 45-54 years. Users shared, reshared, commented on, and reacted to website links predominantly to e-commerce sites (12,200/1.7 million, 36\% of all the most popular links), celebrity news (n=8800, 26\%), and major advocacy organizations (n=4900, 15\%; almost all accounted for by the American Cancer Society breast cancer site). Conclusions: On Facebook, women shared and reacted to links to commercial and informative websites regarding breast cancer and screening. This information could inform patient outreach regarding breast cancer screening, indirectly through better understanding of key issues, and directly through understanding avenues for paid messaging to women authoring and reacting to content in this space. ", doi="10.2196/jmir.7508", url="http://www.jmir.org/2017/6/e201/", url="http://www.ncbi.nlm.nih.gov/pubmed/28600279" } @Article{info:doi/10.2196/cancer.6933, author="Papadakos, Janet and Trang, Aileen and Cyr, B. Alaina and Abdelmutti, Nazek and Giuliani, E. Meredith and Snow, Michelle and McCurdie, Tara and Pulandiran, Menaka and Urowitz, Sara and Wiljer, David", title="Deconstructing Cancer Patient Information Seeking in a Consumer Health Library Toward Developing a Virtual Information Consult for Cancer Patients and Their Caregivers: A Qualitative, Instrumental Case Study", journal="JMIR Cancer", year="2017", month="May", day="24", volume="3", number="1", pages="e6", keywords="patient education", keywords="information-seeking behavior", keywords="health literacy", keywords="Internet", keywords="consumer health information", abstract="Background: Cancer patients and their caregivers want information about their disease and are interested in finding health information online. Despite the abundance of cancer information online, it is often fragmented, its quality is highly variable, and it can be difficult to navigate without expert-level knowledge of the cancer system. The Patient \& Family Library at the Princess Margaret Cancer Centre offers a broad collection of high-quality cancer health information and staff are available to help patrons refine their questions and explore information needs that they may not have considered. Objective: The purpose of this research study was to deconstruct patrons' information-seeking behaviors in the library to assess the feasibility of replicating the services provided in the library through a Web app, extending the service beyond the walls of the cancer centre. The specific aims of this research were to understand (1) how patrons approach information seeking in the library (interface design), (2) how patrons communicate their informational needs (information categorization and metadata requirements), and (3) what resources are provided to address the patrons' information needs (collection development). Methods: We employed a qualitative, instrumental case study to deconstruct patrons' health information-seeking behavior. The study population included patients, the librarian, and library volunteers. Ethnographic observation was conducted at the library over 3 days and key informant interviews with library staff were conducted to address the first aim. A closed card-sorting activity was conducted to address the second aim and the library shift logs and Search Request Forms (SRFs) were reviewed to address the third aim. Results: A total of 55 interactions were recorded during the ethnographic observation and nine semistructured interviews were conducted during the key informant interviews. Seven library patron personas were identified: (1) Newbie, (2) Seasoned, (3) Direct, (4) Window Shopper, (5) Collector, (6) Information Seeker, and (7) Distressed. A total of 83 participants completed the closed card-sorting exercise. The participants' conceptual clusters within the similarity matrix overlapped with the groupings created by the librarian, with a few differences. A total of 161 entries in the library shift log and 65 SRFs were analyzed to determine what resources were given to patrons. Most resources that patrons received were available online (61\%), although almost half of these required special access (47\%). Conclusions: The study findings suggest it is possible to replicate library functions in a Web app with a few exceptions that cannot be replicated online. These elements include access to journal articles or other content behind paywalls and the librarian's ability to encourage further discussion through empathy and active listening. Discussion with the librarian could serve to refine and predict needs through observing information seekers and to provide immediate connection to spiritual care and psychosocial support for patrons in distress. ", doi="10.2196/cancer.6933", url="http://cancer.jmir.org/2017/1/e6/", url="http://www.ncbi.nlm.nih.gov/pubmed/28539305" } @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/cancer.5132, author="Kirkovits, Thomas and Schinkoethe, Timo and Drewes, Caroline and Gehring, Caroline and Bauerfeind, Ingo and Harbeck, Nadia and Wuerstlein, Rachel", title="eHealth in Modern Patient-Caregiver Communication: High Rate of Acceptance Among Physicians for Additional Support of Breast Cancer Patients During Long-Term Therapy", journal="JMIR Cancer", year="2016", month="Sep", day="19", volume="2", number="2", pages="e14", keywords="eHealth", keywords="mobile health", keywords="telemedicine", keywords="physicians", keywords="acceptance", keywords="breast cancer", keywords="patient compliance", keywords="patient adherence", abstract="Background: Lack of adherence and compliance with drug regimens among breast cancer patients represent substantial problems in oral therapies, leading to significant impacts on mortality. Where other systems have failed, electronic health (eHealth) could be a possible solution to improve medication intake, along with the doctor-patient relationship. Initial results from studies concerning new interventions for therapy support are promising, but reports suggest that general acceptance of new treatment support tools is needed among patients and physicians alike. Objective: The aim of this study was to investigate the actual use of the Internet and other modern media among physicians involved in breast cancer treatment. Methods: Using a standardized questionnaire, actual utilization of new media among physicians was analyzed. Internet-related behaviors in private, as well as in business life, were investigated. Attention was focused on physicians' opinions regarding modern eHealth tools and how patients could be best supported to enhance adherence. Results: A total of 120 physicians, all participating in breast cancer care, completed the questionnaire (median age 41 years). Almost all participants (99.2\%, 119/120) used the Internet for general purposes and 98.3\% (118/120) used it for medical issues as well. Virtually all medical professionals (99.2\%, 119/120) reported that they owned a computer, while more recently invented technologies such as tablets and smartphones were owned by 31.9\% (38/119) and 73.1\% (87/119), respectively. The Internet was favored by 66.4\% (79/119) of the physicians in our survey as a source for patient support; 71.2\% (84/118) would also favor modern media for side effect registration. Based on our analysis, the most frequent Internet-utilizing physicians were characterized by age <60, worked in a hospital, and were employed as a junior physician. Conclusions: This study demonstrated a high usage of Internet-related technologies among physicians, indicating that the use of eHealth for advanced and individualized support in breast cancer care is a promising addition to treatment management. Such technologies have the potential to enhance adherence and compliance in therapy among cancer patients. ", doi="10.2196/cancer.5132", url="http://cancer.jmir.org/2016/2/e14/", url="http://www.ncbi.nlm.nih.gov/pubmed/28410173" } @Article{info:doi/10.2196/cancer.5711, author="Drewes, Caroline and Kirkovits, Thomas and Schiltz, Daniel and Schinkoethe, Timo and Haidinger, Renate and Goldmann-Posch, Ursula and Harbeck, Nadia and Wuerstlein, Rachel", title="EHealth Acceptance and New Media Preferences for Therapy Assistance Among Breast Cancer Patients", journal="JMIR Cancer", year="2016", month="Sep", day="14", volume="2", number="2", pages="e13", keywords="eHealth", keywords="mHealth", keywords="breast cancer", keywords="adherence", keywords="compliance", keywords="new media", keywords="therapy improvement", abstract="Background: Electronic health (eHealth) and mobile communication-based health care (mHealth) applications have been increasingly utilized in medicine over the last decade, and have facilitated improved adherence to therapy regimens in patients with chronic conditions. Due to the long duration of breast cancer therapy, and the long course of disease in metastatic breast cancer, a need for more intensified physician-patient communication has emerged. Various support mechanisms, including new media such as mHealth and eHealth, have been proposed for this purpose. Objective: The aim of this study was to analyze the correlation between sociodemographic factors, as well as health status of breast cancer patients, and their current utilization of new media, or their willingness to use Internet and mobile phone apps for improvement of therapy management. Methods: The survey for this study was conducted anonymously during the 2012 Mamazone Projekt Diplompatient meeting (Augsburg, Germany), which hosted approximately 375 participants per day. A total of 168 questionnaires were completed. The questionnaire aimed to assess sociodemographic status, disease patterns, and current use of new media (ie, Internet, mobile phone, and mobile phone apps) in breast cancer patients. Habits and frequency of use for these new technologies, as well as patients' affinity towards eHealth and mHealth tools for therapy management improvement, were investigated. Results: Almost all participants used the Internet (95.8\%, 161/168), with 91.5\% (151/165) also utilizing this technology for health-related issues. Approximately 23\% (38/168) of respondents owned a mobile phone. When asked about their preferences for therapy assistance, 67.3\% (113/168) of respondents were interested in assistance via the Internet, 25.0\% (42/168) via mobile phone, and 73.2\% (123/168) via call center. Patients diagnosed with breast cancer <5 years before the survey were significantly more interested in a call center than patients diagnosed >5 years before survey participation. Conclusions: The vast majority of breast cancer patients accept the Internet for therapy assistance, which indicates that eHealth is a promising medium to improve patient-physician communication. Such technologies may improve individual disease management and ultimately lead to an enhanced adherence to therapy regimens. ", doi="10.2196/cancer.5711", url="http://cancer.jmir.org/2016/2/e13/", url="http://www.ncbi.nlm.nih.gov/pubmed/28410189" } @Article{info:doi/10.2196/resprot.5547, author="Janssen, Anna and Shaw, Tim and Nagrial, Adnan and Pene, Christopher and Rabbets, Melanie and Carlino, Matteo and Zachulski, Clare and Phillips, Jane and Birnbaum, Robert and Gandhi, Tejal and Harnett, Paul", title="An Online Learning Module to Increase Self-Efficacy and Involvement in Care for Patients With Advanced Lung Cancer: Research Protocol", journal="JMIR Res Protoc", year="2016", month="Aug", day="08", volume="5", number="3", pages="e147", keywords="patient education", keywords="eHealth", keywords="online learning", keywords="lung cancer", keywords="palliative care", keywords="side-effect management", keywords="patient safety and quality", keywords="patient self-efficacy", abstract="Background: Improving patient care for individuals with lung cancer is a priority due to the increasing burden of the disease globally. One way this can be done is by improving patient self-management capabilities through increasing their self-efficacy. This can improve positive outcomes for patients with chronic conditions and increase their ability to manage the challenges of such illnesses. Unfortunately, patients with chronic conditions often struggle to travel far from home to engage with patient education events, a common means of improving self-efficacy. The development of more accessible tools for improving patient self-efficacy is required to increase quality of life for patients with chronic conditions. Objective: To evaluate the feasibility of delivering symptom identification and management information to patients with advanced lung cancer using an online program. Methods: This article describes a pre-post test study to evaluate a Qstream online learning platform to improve patient self-efficacy for managing advanced lung cancer symptoms. Undertaking this program should increase participant knowledge about the side-effects they may experience as a result of their treatment and in turn increase help-seeking behavior and self-efficacy for the participant cohort. Quantitative data collected by the Qstream platform on the completion rates of participants will be used as a tool to evaluate the intervention. Additionally, validated scales will be used to collect data on patient self-efficacy. Qualitative data will also be collected via an exit survey and thematic content analysis of semi-structured interviews. Results: The research is in the preliminary stages but thus far a protocol has been approved in support of the project. Additionally, advisory committee members have been identified and initial meetings have been undertaken. Conclusions: Development of new approaches for increasing patient understanding of their care is important to ensure high quality care continues to be delivered in the clinical setting. ", doi="10.2196/resprot.5547", url="http://www.researchprotocols.org/2016/3/e147/", url="http://www.ncbi.nlm.nih.gov/pubmed/27503206" } @Article{info:doi/10.2196/jmir.5618, author="Bolle, Sifra and Romijn, Geke and Smets, A. Ellen M. and Loos, F. Eugene and Kunneman, Marleen and van Weert, M. Julia C.", title="Older Cancer Patients' User Experiences With Web-Based Health Information Tools: A Think-Aloud Study", journal="J Med Internet Res", year="2016", month="Jul", day="25", volume="18", number="7", pages="e208", keywords="user experience", keywords="eHealth", keywords="usability", keywords="think aloud", keywords="aging", keywords="cancer", abstract="Background: Health information is increasingly presented on the Internet. Several Web design guidelines for older Web users have been proposed; however, these guidelines are often not applied in website development. Furthermore, although we know that older individuals use the Internet to search for health information, we lack knowledge on how they use and evaluate Web-based health information. Objective: This study evaluates user experiences with existing Web-based health information tools among older (? 65 years) cancer patients and survivors and their partners. The aim was to gain insight into usability issues and the perceived usefulness of cancer-related Web-based health information tools. Methods: We conducted video-recorded think-aloud observations for 7 Web-based health information tools, specifically 3 websites providing cancer-related information, 3 Web-based question prompt lists (QPLs), and 1 values clarification tool, with colorectal cancer patients or survivors (n=15) and their partners (n=8) (median age: 73; interquartile range 70-79). Participants were asked to think aloud while performing search, evaluation, and application tasks using the Web-based health information tools. Results: Overall, participants perceived Web-based health information tools as highly useful and indicated a willingness to use such tools. However, they experienced problems in terms of usability and perceived usefulness due to difficulties in using navigational elements, shortcomings in the layout, a lack of instructions on how to use the tools, difficulties with comprehensibility, and a large amount of variety in terms of the preferred amount of information. Although participants frequently commented that it was easy for them to find requested information, we observed that the large majority of the participants were not able to find it. Conclusions: Overall, older cancer patients appreciate and are able to use cancer information websites. However, this study shows the importance of maintaining awareness of age-related problems such as cognitive and functional decline and navigation difficulties with this target group in mind. The results of this study can be used to design usable and useful Web-based health information tools for older (cancer) patients. ", doi="10.2196/jmir.5618", url="http://www.jmir.org/2016/7/e208/", url="http://www.ncbi.nlm.nih.gov/pubmed/27457709" } @Article{info:doi/10.2196/jmir.4914, author="Nicolaije, AH Kim and Ezendam, PM Nicole and Pijnenborg, MA Johanna and Boll, Dorry and Vos, Caroline Maria and Kruitwagen, FPM Roy and van de Poll-Franse, V. Lonneke", title="Paper-Based Survivorship Care Plans May be Less Helpful for Cancer Patients Who Search for Disease-Related Information on the Internet: Results of the Registrationsystem Oncological Gynecology (ROGY) Care Randomized Trial", journal="J Med Internet Res", year="2016", month="Jul", day="08", volume="18", number="7", pages="e162", keywords="Survivorship Care Plan", keywords="Internet use", keywords="pragmatic cluster randomized trial", keywords="endometrial neoplasms", keywords="patient-reported outcomes", keywords="information provision", abstract="Background: The Institute of Medicine recommends Survivorship Care Plans (SCPs) for all cancer survivors. However, it is unclear whether certain patient groups may or may not benefit from SCPs. Objective: The aim was to assess whether the effects of an automatically generated paper SCP on patients' satisfaction with information provision and care, illness perceptions, and health care utilization were moderated by disease-related Internet use. Methods: Twelve hospitals were randomized to either SCP care or usual care in the pragmatic cluster randomized Registrationsystem Oncological GYnecology (ROGY) Care trial. Newly diagnosed endometrial cancer patients completed questionnaires after diagnosis (N=221; response: 74.7\%, 221/296), 6 months (n=158), and 12 months (n=147), including patients' satisfaction with information provision and care, illness perceptions, health care utilization (how many times patients visited a medical specialist or primary care physician about their cancer in the past 6 months), and disease-related Internet use (whether patients used the Internet to look for information about cancer). Results: In total, 80 of 221 (36.2\%) patients used the Internet to obtain disease-related information. Disease-related Internet use moderated the SCP care effect on the amount of information received about the disease (P=.03) and medical tests (P=.01), helpfulness of the information (P=.01), and how well patients understood their illness (P=.04). All stratified analyses were not statistically significant. However, it appeared that patients who did not seek disease-related information on the Internet in the SCP care arm reported receiving more information about their disease (mean 63.9, SD 20.1 vs mean 58.3, SD 23.7) and medical tests (mean 70.6, SD 23.5 vs mean 64.7, SD 24.9), finding the information more helpful (76.7, SD 22.9 vs mean 67.8, SD 27.2; scale 0-100), and understanding their illness better (mean 6.6, SD 3.0 vs mean 6.1, SD 3.2; scale 1-10) than patients in the usual care arm did. In addition, although all stratified analyses were not significant, patients who did seek disease-related information on the Internet in the SCP care arm appeared to receive less information about their disease (mean 65.7, SD 23.4 vs mean 67.1, SD 20.7) and medical tests (mean 72.4, SD 23.5 vs mean 75.3, SD 21.6), did not find the information more helpful (mean 78.6, SD 21.2 vs mean 76.0, SD 22.0), and reported less understanding of their illness (mean 6.3, SD 2.8 vs mean 7.1, SD 2.7) than patients in the usual care arm did. Conclusions: Paper SCPs appear to improve the amount of information received about the disease and medical tests, the helpfulness of the information, and understanding of the illness for patients who do not search for disease-related information on the Internet. In contrast, paper SCPs do not seem beneficial for patients who do seek disease-related information on the Internet. Trial Registration: ClinicalTrials.gov NCT01185626; https://clinicaltrials.gov/ct2/show/NCT01185626 (Archived by WebCite at http://www.webcitation.org/6fpaMXsDn) ", doi="10.2196/jmir.4914", url="http://www.jmir.org/2016/7/e162/", url="http://www.ncbi.nlm.nih.gov/pubmed/27392550" } @Article{info:doi/10.2196/mhealth.5715, author="Arvidsson, Susann and Gilljam, Britt-Mari and Nygren, Jens and Ruland, Maria Cornelia and Nordby-B{\o}e, Trude and Svedberg, Petra", title="Redesign and Validation of Sisom, an Interactive Assessment and Communication Tool for Children With Cancer", journal="JMIR Mhealth Uhealth", year="2016", month="Jun", day="24", volume="4", number="2", pages="e76", keywords="cancer", keywords="children", keywords="communication", keywords="mobile app", keywords="participation", keywords="validation", abstract="Background: Children with cancer undergo intensive and long treatment periods that expose them and their families to a number of difficult physical, mental, and social challenges. Empowering children by actively involving them in their care can help them to cope with these challenges. It can, however, be difficult for children to be involved and talk about their illness experiences in a ``traditional'' conversation with health care professionals, especially for younger children. Sisom (Norwegian acronym ``Si det som det er'' or ``Tell it how it is'') is an interactive computer-based assessment and communication tool to give children (aged 6-12 years) with cancer a ``voice'' in their care. Because of technological advances and widespread use of mobile devices Sisom had to be redesigned to better meet the needs of children of today. Objective: To redesign Sisom for use on mobile devices and to validate and adapt it for use in a Swedish population of children with cancer. Methods: A user-experience design was used. Content adaptation included forward-backward translation by Swedish and Norwegian translators. Healthy children (n=5), children with experiences of cancer treatment (n=5) and their parents (n=5), and pediatric nurses (n=2) were then involved in culturally adapting Sisom to the Swedish context. The iterative low- and high-fidelity evaluation was supported by a think aloud method, semistructured interviews, and drawings to capture children's views of Sisom. The redesign and evaluation continued until no further changes or improvements were identified by the participants or the researchers. Results: Children, parents, and pediatric nurses offered many suggestions for improvements to the original version in terms of content, aesthetics, and usability of Sisom. The most significant change that emerged through user input was a modification that entailed not using problem-focused statements in the assessment items. The parents and pediatric nurses considered the revised assessment items to be general and less diagnosis specific. The evaluation of aesthetics resulted in brighter colors and more positive and exciting details in the animations. The evaluation of usability included improvements of the verbal instructions on how to navigate in Sisom 2, and also that the answers to assessment items in Sisom 2 should be saved to provide the children with the option to pause and to continue answering the remaining assessment items at a later stage. Conclusions: Overall, this paper describes the process of using user-experience design with children in order to redesign and validate an interactive assessment and communication tool and how the outcomes of this process resulted in a new version, Sisom 2. All participants confirmed the usability and qualities of using the final version. Future research should be directed toward the implementation of Sisom 2 in clinical practice and to evaluate outcomes from individual and organizational levels. ", doi="10.2196/mhealth.5715", url="http://mhealth.jmir.org/2016/2/e76/", url="http://www.ncbi.nlm.nih.gov/pubmed/27343004" } @Article{info:doi/10.2196/jmir.5521, author="Mazzocut, Mauro and Truccolo, Ivana and Antonini, Marialuisa and Rinaldi, Fabio and Omero, Paolo and Ferrarin, Emanuela and De Paoli, Paolo and Tasso, Carlo", title="Web Conversations About Complementary and Alternative Medicines and Cancer: Content and Sentiment Analysis", journal="J Med Internet Res", year="2016", month="Jun", day="16", volume="18", number="6", pages="e120", keywords="complementary and alternative medicine", keywords="Internet", keywords="neoplasms", keywords="health information online", keywords="website content analysis", keywords="barriers to patient-doctor communication", keywords="misinformation", keywords="sentiment analysis", keywords="data mining", abstract="Background: The use of complementary and alternative medicine (CAM) among cancer patients is widespread and mostly self-administrated. Today, one of the most relevant topics is the nondisclosure of CAM use to doctors. This general lack of communication exposes patients to dangerous behaviors and to less reliable information channels, such as the Web. The Italian context scarcely differs from this trend. Today, we are able to mine and analyze systematically the unstructured information available in the Web, to get an insight of people's opinions, beliefs, and rumors concerning health topics. Objective: Our aim was to analyze Italian Web conversations about CAM, identifying the most relevant Web sources, therapies, and diseases and measure the related sentiment. Methods: Data have been collected using the Web Intelligence tool ifMONITOR. The workflow consisted of 6 phases: (1) eligibility criteria definition for the ifMONITOR search profile; (2) creation of a CAM terminology database; (3) generic Web search and automatic filtering, the results have been manually revised to refine the search profile, and stored in the ifMONITOR database; (4) automatic classification using the CAM database terms; (5) selection of the final sample and manual sentiment analysis using a 1-5 score range; (6) manual indexing of the Web sources and CAM therapies type retrieved. Descriptive univariate statistics were computed for each item: absolute frequency, percentage, central tendency (mean sentiment score [MSS]), and variability (standard variation $\sigma$). Results: Overall, 212 Web sources, 423 Web documents, and 868 opinions have been retrieved. The overall sentiment measured tends to a good score (3.6 of 5). Quite a high polarization in the opinions of the conversation partaking emerged from standard variation analysis ($\sigma$?1). In total, 126 of 212 (59.4\%) Web sources retrieved were nonhealth-related. Facebook (89; 21\%) and Yahoo Answers (41; 9.7\%) were the most relevant. In total, 94 CAM therapies have been retrieved. Most belong to the ``biologically based therapies or nutrition'' category: 339 of 868 opinions (39.1\%), showing an MSS of 3.9 ($\sigma$=0.83). Within nutrition, ``diets'' collected 154 opinions (18.4\%) with an MSS of 3.8 ($\sigma$=0.87); ``food as CAM'' overall collected 112 opinions (12.8\%) with a MSS of 4 ($\sigma$=0.68). Excluding diets and food, the most discussed CAM therapy is the controversial Italian ``Di Bella multitherapy'' with 102 opinions (11.8\%) with an MSS of 3.4 ($\sigma$=1.21). Breast cancer was the most mentioned disease: 81 opinions of 868. Conclusions: Conversations about CAM and cancer are ubiquitous. There is a great concern about the biologically based therapies, perceived as harmless and useful, under-rating all risks related to dangerous interactions or malnutrition. Our results can be useful to doctors to be aware of the implications of these beliefs for the clinical practice. Web conversation exploitation could be a strategy to gain insights of people's perspective for other controversial topics. ", doi="10.2196/jmir.5521", url="http://www.jmir.org/2016/6/e120/", url="http://www.ncbi.nlm.nih.gov/pubmed/27311444" } @Article{info:doi/10.2196/resprot.5641, author="Zdenkowski, Nicholas and Butow, Phyllis and Hutchings, Elizabeth and Douglas, Charles and Coll, R. Joseph and Boyle, M. Frances", title="A Decision Aid for Women Considering Neoadjuvant Systemic Therapy for Operable Invasive Breast Cancer: Development and Protocol of a Phase II Evaluation Study (ANZ1301 DOMINO)", journal="JMIR Res Protoc", year="2016", month="May", day="20", volume="5", number="2", pages="e88", keywords="breast neoplasm", keywords="decision aid", keywords="neoadjuvant", keywords="chemotherapy", keywords="protocol", abstract="Background: Neoadjuvant systemic therapy is offered to selected women with large and/or highly proliferative operable breast cancers. This option adds further complexity to an already complex breast cancer treatment decision tree. Patient decision aids are an established method of increasing patient involvement and knowledge while decreasing decisional conflict. There is currently no decision aid available for women considering neoadjuvant systemic therapy. Objective: We aimed to develop a decision aid for women diagnosed with operable breast cancer and considered suitable for neoadjuvant systemic therapy, and the protocol for a multicenter pre-post study evaluating the acceptability and feasibility of the decision aid. Methods: The decision aid was developed through literature review, expert advisory panel, adherence to the International Patient Decision Aid Standards, and iterative review. The protocol for evaluation of the decision aid consists of the following: eligible women will undertake a series of questionnaires prior to and after using the decision aid. The primary endpoint is decision aid acceptability to patients and investigators and the feasibility of use. Secondary endpoints include change in decisional conflict, participant knowledge, and information involvement preference. Feasibility is defined as the proportion of eligible participants who use the decision aid to help inform their treatment decision. Results: This study has recruited 29 out of a planned 50 participants at four Australian sites. A 12-month recruitment period is expected with a further 12-months follow-up. Conclusions: The decision aid has the potential to allow patients with operable breast cancer, who have been offered neoadjuvant systemic therapy, decreased decisional conflict, and greater involvement in the decision. If this study finds that an online decision aid is feasible and acceptable, it will be made widely available for routine clinical practice. Trial Registration: Australian and New Zealand Clinical Trials Registry ACTRN12614001267640; http://www.anzctr.org.au/TrialSearch.aspx?searchTxt=ACTRN12614001267640\&isBasic=True (Archived by WebCite at http://www.webcitation.org/6gh7BPZdG) ", doi="10.2196/resprot.5641", url="http://www.researchprotocols.org/2016/2/e88/", url="http://www.ncbi.nlm.nih.gov/pubmed/27207563" } @Article{info:doi/10.2196/resprot.4757, author="van Veen, Rebecca Merel and Beijer, Sandra and Adriaans, Alberdina Anika Maria and Vogel-Boezeman, Jeanne and Kampman, Ellen", title="Development of a Website Providing Evidence-Based Information About Nutrition and Cancer: Fighting Fiction and Supporting Facts Online", journal="JMIR Res Protoc", year="2015", month="Sep", day="08", volume="4", number="3", pages="e110", keywords="cancer", keywords="information needs", keywords="Internet", keywords="nutrition", keywords="website development", abstract="Background: Although widely available, the general public, cancer patients, and cancer survivors have difficulties accessing evidence-based information on nutrition and cancer. It is challenging to distinguish myths from facts, and sometimes conflicting information can be found in different places. The public and patients would benefit from evidence-based, correct, and clear information from an easily recognizable source. Objective: The aim of this project is to make scientific information available for the general public, cancer patients, and cancer survivors through a website. The aim of this paper is to describe and evaluate the development of the website as well as related statistics 1st year after its launch. Methods: To develop the initial content for the website, the website was filled with answers to frequently asked questions provided by cancer organizations and the Dutch Dietetic Oncology Group, and by responding to various fiction and facts published in the media. The website was organized into 3 parts, namely, nutrition before (prevention), during, and after cancer therapy; an opportunity for visitors to submit specific questions regarding nutrition and cancer was included. The website was pretested by patients, health care professionals, and communication experts. After launching the website, visitors' questions were answered by nutritional scientists and dieticians with evidence- or eminence-based information on nutrition and cancer. Once the website was live, question categories and website statistics were recorded. Results: Before launch, the key areas for improvement, such as navigation, categorization, and missing information, were identified and adjusted. In the 1st year after the launch, 90,111 individuals visited the website, and 404 questions were submitted on nutrition and cancer. Most of the questions were on cancer prevention and nutrition during the treatment of cancer. Conclusions: The website provides access to evidence- and eminence-based information on nutrition and cancer. As can be concluded from the number of visitors and the number of questions submitted to the website, the website fills a gap. ", doi="10.2196/resprot.4757", url="http://www.researchprotocols.org/2015/3/e110/", url="http://www.ncbi.nlm.nih.gov/pubmed/26350824" } @Article{info:doi/10.2196/cancer.4279, author="Fissler, Tim and Bientzle, Martina and Cress, Ulrike and Kimmerle, Joachim", title="The Impact of Advice Seekers' Need Salience and Doctors' Communication Style on Attitude and Decision Making: A Web-Based Mammography Consultation Role Play", journal="JMIR Cancer", year="2015", month="Sep", day="08", volume="1", number="2", pages="e10", keywords="communication style", keywords="needs", keywords="need salience", keywords="attitude", keywords="decision-making", keywords="mammography screening", keywords="online consultation", abstract="Background: Patients and advice seekers come to a medical consultation with typical needs, and physicians require adequate communication skills in order to address those needs effectively. It is largely unclear, however, to what extent advice seekers' attitudes toward a medical procedure or their resulting decisions are influenced by a physician's communication that ignores or explicitly takes these needs into account. Objective: This experimental study tested how advice seekers' salient needs and doctor's communication styles influenced advice seekers' attitudes toward mammography screening and their decision whether or not to participate in this procedure. Methods: One hundred women (age range 20-47 years, mean 25.22, SD 4.71) participated in an interactive role play of an online consultation. During the consultation, a fictitious, program-controlled physician provided information about advantages and disadvantages of mammography screening. The physician either merely communicated factual medical information or made additional comments using a communication style oriented toward advice seekers' typical needs for clarity and well-being. Orthogonal to this experimental treatment, participants' personal needs for clarity and for well-being were either made salient before or after the consultation with a needs questionnaire. We also measured all participants' attitudes toward mammography screening and their hypothetical decisions whether or not to participate before and after the experiment. Results: As assumed, the participants expressed strong needs for clarity (mean 4.57, SD 0.42) and for well-being (mean 4.21, SD 0.54) on 5-point Likert scales. Making these needs salient or not revealed significant interaction effects with the physician's communication style regarding participants' attitude change (F1,92=7.23, P=.009, $\eta$2=.073) and decision making (F1,92=4.43, P=.038, $\eta$2=.046). Those participants whose needs were made salient before the consultation responded to the physician's communication style, while participants without salient needs did not. When the physician used a need-oriented communication style, those participants with salient needs had a more positive attitude toward mammography after the consultation than before (mean 0.13, SD 0.54), while they changed their attitude in a negative direction when confronted with a purely fact-oriented communication style (mean ?0.35, SD 0.80). The same applied to decision modification (need-oriented: mean 0.10, SD 0.99; fact-oriented: mean ?0.30, SD 0.88). Conclusions: The findings underline the importance of communicating in a need-oriented style with patients and advice seekers who are aware of their personal needs. Ignoring the needs of those people appears to be particularly problematic. So physicians' sensitivity for advice seekers' currently relevant needs is essential. ", doi="10.2196/cancer.4279", url="http://cancer.jmir.org/2015/2/e10/", url="http://www.ncbi.nlm.nih.gov/pubmed/28410160" } @Article{info:doi/10.2196/cancer.4892, author="Smith, A. Selina and Claridy, D. Mechelle and Smith Whitehead, Mary and Sheats, Q. Joyce and Yoo, Wonsuk and Alema-Mensah, A. Ernest and Ansa, E-O Benjamin and Coughlin, S. Steven", title="Lifestyle Modification Experiences of African American Breast Cancer Survivors: A Needs Assessment", journal="JMIR Cancer", year="2015", month="Aug", day="17", volume="1", number="2", pages="e9", keywords="African Americans", keywords="breast cancer", keywords="cancer survivors", keywords="nutrition", keywords="physical activity", abstract="Background: Little is known about the rates of obesity among African American (AA) breast cancer survivors (BCSs), the availability and use of lifestyle modification methods suitable for this population, and the impact of changes in dietary intake and physical activity on health-related quality of life (HR-QoL). Objective: The objectives of the study were to describe obesity rates, dietary intake, and physical activity as lifestyle modification strategies; examine predictors of engagement in these strategies post diagnosis; and learn more about salient features of lifestyle interventions from AA BCSs participating in a breast cancer support group. Methods: The needs assessment included four components: (1) a literature review to determine existing lifestyle modification strategies of AA BCSs; (2) secondary data analysis of the 2010 National Health Interview Survey, Cancer Control Supplement to examine HR-QoL; (3) administration, to 200 AA BCSs, of an assessment tool relating to weight and breast cancer history, dietary intake, and physical activity through a variety of approaches (eg, Internet, mail, in-person, and telephone); and (4) focus group discussions to frame lifestyle interventions. Results: Preliminary findings indicate that AA BCSs are underrepresented in lifestyle intervention research, have disparities in HR-QoL outcomes, do not meet current cancer prevention guidelines, and have recommendations for effective strategies for lifestyle modification. Conclusions: As analyses of the needs assessment are completed, the research team is partnering with community coalitions and breast cancer support groups in Miami, Chicago, Houston, Los Angeles, and Philadelphia to develop community-engaged intervention approaches for promoting adherence to cancer prevention guidelines. ", doi="10.2196/cancer.4892", url="http://cancer.jmir.org/2015/2/e9/", url="http://www.ncbi.nlm.nih.gov/pubmed/28410162" } @Article{info:doi/10.2196/publichealth.3310, author="Mahoney, Meghan L. and Tang, Tang and Ji, Kai and Ulrich-Schad, Jessica", title="The Digital Distribution of Public Health News Surrounding the Human Papillomavirus Vaccination: A Longitudinal Infodemiology Study", journal="JMIR Public Health Surveill", year="2015", month="Mar", day="18", volume="1", number="1", pages="e2", keywords="new media", keywords="public health dissemination", keywords="health communication", keywords="social media", keywords="HPV vaccination", keywords="infodemiology", keywords="infoveillance", abstract="Background: New media changes the dissemination of public health information and misinformation. During a guest appearance on the Today Show, US Representative Michele Bachmann claimed that human papillomavirus (HPV) vaccines could cause ``mental retardation''. Objective: The purpose of this study is to explore how new media influences the type of public health information users access, as well as the impact to these platforms after a major controversy. Specifically, this study aims to examine the similarities and differences in the dissemination of news articles related to the HPV vaccination between Google News and Twitter, as well as how the content of news changed after Michele Bachmann's controversial comment. Methods: This study used a purposive sampling to draw the first 100 news articles that appeared on Google News and the first 100 articles that appeared on Twitter from August 1-October 31, 2011. Article tone, source, topics, concerns, references, publication date, and interactive features were coded. The intercoder reliability had a total agreement of .90. Results: Results indicate that 44.0\% of the articles (88/200) about the HPV vaccination had a positive tone, 32.5\% (65/200) maintained a neutral tone, while 23.5\% (47/200) presented a negative tone. Protection against diseases 82.0\% (164/200), vaccine eligibility for females 75.5\% (151/200), and side effects 59.0\% (118/200) were the top three topics covered by these articles. Google News and Twitter articles significantly differed in article tone, source, topics, concerns covered, types of sources referenced in the article, and uses of interactive features. Most notably, topic focus changed from public health information towards political conversation after Bachmann's comment. Before the comment, the HPV vaccine news talked more often about vaccine dosing (P<.001), duration (P=.005), vaccine eligibility for females (P=.03), and protection against diseases (P=.04) than did the later pieces. After the controversy, the news topic shifted towards politics (P=.01) and talked more about HPV vaccine eligibility for males (P=.01). Conclusions: This longitudinal infodemiology study suggests that new media influences public health communication, knowledge transaction, and poses potential problems in the amount of misinformation disseminated during public health campaigns. In addition, the study calls for more research to adopt an infodemiology approach to explore relationships between online information supply and public health decisions. ", doi="10.2196/publichealth.3310", url="http://publichealth.jmir.org/2015/1/e2/", url="http://www.ncbi.nlm.nih.gov/pubmed/27227125" } @Article{info:doi/10.2196/cancer.4204, author="Basch, H. Corey and Basch, E. Charles and Hillyer, Clarke Grace and Reeves, Rachel", title="YouTube Videos Related to Skin Cancer: A Missed Opportunity for Cancer Prevention and Control", journal="JMIR Cancer", year="2015", month="Mar", day="02", volume="1", number="1", pages="e1", keywords="skin cancer", keywords="social media", keywords="YouTube", abstract="Background: Early detection and treatment influence the mortality risk of skin cancer. Objective: The objective of this study was to analyze the content of the most viewed professional and consumer videos uploaded to YouTube related to skin cancer. Methods: A total of 140 professional and consumer videos uploaded between 2007 and 2014 were identified and coded. Coding involved identifying and sorting followed by gathering descriptive information, including length of the video, number of views, and year uploaded. A dichotomous coding scheme (ie, yes or no) was used in coding specific aspects of video content, including provision of information, type of skin cancer, age group, family history, risk reduction, risk factors, fear, and home remedies for skin cancer treatment. Results: The majority of videos provided information related to screening. Many consumer videos conveyed information related to the use of a black salve as a home remedy for skin cancer, despite the fact that there is no evidence that it is an effective treatment. Conclusions: Research is needed to identify characteristics of videos that are most likely to be viewed to inform the development of credible communications. ", doi="10.2196/cancer.4204", url="http://cancer.jmir.org/2015/1/e1/", url="http://www.ncbi.nlm.nih.gov/pubmed/28410167" } @Article{info:doi/10.2196/resprot.3407, author="Stienen, JC Jozette and Ottevanger, B. Petronella and Wennekes, Lianne and Dekker, M. Helena and van der Maazen, WM Richard and Mandigers, MPW Caroline and van Krieken, HJM Johan and Blijlevens, MA Nicole and Hermens, PMG Rosella", title="Development and Evaluation of an Educational E-Tool to Help Patients With Non-Hodgkin's Lymphoma Manage Their Personal Care Pathway", journal="JMIR Res Protoc", year="2015", month="Jan", day="09", volume="4", number="1", pages="e6", keywords="eHealth", keywords="personalized care", keywords="non-Hodgkin's lymphoma", keywords="patient education", keywords="care pathway", keywords="consumer health information", keywords="empowerment", keywords="personal care management", abstract="Background: An overload of health-related information is available for patients on numerous websites, guidelines, and information leaflets. However, the increasing need for personalized health-related information is currently unmet. Objective: This study evaluates an educational e-tool for patients with non-Hodgkin's lymphoma (NHL) designed to meet patient needs with respect to personalized and complete health-related information provision. The e-tool aims to help NHL patients manage and understand their personal care pathway, by providing them with insight into their own care pathway, the possibility to keep a diary, and structured health-related information. Methods: Together with a multidisciplinary NHL expert panel, we developed an e-tool consisting of two sections: (1) a personal section for patients' own care pathway and their experiences, and (2) an informative section including information on NHL. We developed an ideal NHL care pathway based on the available (inter)national guidelines. The ideal care pathway, including date of first consultation, diagnosis, and therapy start, was used to set up the personal care pathway. The informative section was developed in collaboration with the patient association, Hematon. Regarding participants, 14 patients and 6 laymen were asked to evaluate the e-tool. The 24-item questionnaire used discussed issues concerning layout (6 questions), user convenience (3 questions), menu clarity (3 questions), information clarity (5 questions), and general impression (7 questions). In addition, the panel members were asked to give their feedback by email. Results: A comprehensive overview of diagnostics, treatments, and aftercare can be established by patients completing the questions from the personal section. The informative section consisted of NHL information regarding NHL in general, diagnostics, therapy, aftercare, and waiting times. Regarding participants, 6 patients and 6 laymen completed the questionnaire. Overall, the feedback was positive, with at least 75\% satisfaction on each feedback item. Important strengths mentioned were the use of a low health-literacy level, the opportunity to document the personal care pathway and experiences, and the clear overview of the information provided. The added value of the e-tool in general was pointed out as very useful for preparing the consultation with one's doctor and for providing all information on one website, including the opportunity for a personalized care pathway and diary. The majority of the revisions concerned wording and clarity. In addition, more explicit information on immunotherapy, experimental therapy, and psychosocial support was added. Conclusions: We have developed a personal care management e-tool for NHL patients. This tool contains a unique way to help patients manage their personal care pathway and give them insight into their NHL by providing health-related information and a personal diary. This evaluation showed that our e-tool meets patients' needs concerning personalized health-related information, which might serve as a good example for other oncologic diseases. Future research should focus on the possible impact of the e-tool on doctor-patient communication during consultations. ", doi="10.2196/resprot.3407", url="http://www.researchprotocols.org/2015/1/e6/", url="http://www.ncbi.nlm.nih.gov/pubmed/25575019" }