Recent Articles:

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  Cancer Survivorship

  Aug 20, 2019

  Usefulness and Usability of a Personal Health Record and Survivorship Care Plan for Colorectal Cancer Survivors: Survey Study

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  Authors List:

  • Will L Tarver  
  • Bruce W Robb  
  • David A Haggstrom  

  Abstract:

  Background: As a result of improvements in cancer screening, treatment, and supportive care, nearly two-thirds of individuals diagnosed with colorectal cancer (CRC) live for 5 years after diagnosis. An ever-increasing population of CRC survivors creates a need for effective survivorship care to help manage and mitigate the impact of CRC and its treatment. Personal health records (PHRs) and survivorship care plans provide a means of supporting the long-term care of cancer survivors. Objective: The purpose of this study is to characterize the usefulness of a CRC PHR and survivorship care plan and to describe the usability of these technologies in a population of CRC survivors. To our knowledge, this is the first study to assess a PHR and survivorship care plan specifically targeting CRC survivors. Methods: Twenty-two patients with CRC were recruited from surgery clinics of an academic medical center and Veterans Affairs hospital in Indianapolis and provided access to an online Colorectal Cancer Survivor’s Personal Health Record (CRCS-PHR). Survey data were collected to characterize the usefulness of the CRCS-PHR and describe its usability in a population of CRC survivors. CRC survivors were surveyed 6 months after being provided online access. Means and proportions were used to describe the usefulness and ease of using the CRC website. Open-ended questions were qualitatively coded using the constant comparative method. Results: CRC survivors perceived features related to their health care (ie, summary of cancer treatment history, follow-up care schedule, description of side effects, and list of community resources) to be more useful than communication features (ie, creating online relationships with family members or caregivers, communicating with doctor, and secure messages). CRC survivors typically described utilizing traditional channels (eg, via telephone or in person) to communicate with their health care provider. Participants had overall positive perceptions with respect to ease of use and overall satisfaction. Major challenges experienced by participants included barriers to system log-in, lack of computer literacy or experience, and difficulty entering their patient information. Conclusions: For CRC, survivors may find the greater value in a PHR’s medical content than the communication functions, which they have available elsewhere. These findings regarding the usefulness and usability of a PHR for the management of CRC survivorship provide valuable insights into how best to tailor these technologies to patients’ needs. These findings can inform future design and development of PHRs for purposes of both cancer and chronic disease management.

  • JMIR Cancer 2019;5(2):e10692

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  Reviews on Innovations in Cancer

  Jul 31, 2019

  Digital Interventions to Support Adolescents and Young Adults With Cancer: Systematic Review

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  Authors List:

  • Lisa McCann  
  • Kathryn Anne McMillan  
  • Gemma Pugh  

  Abstract:

  Background: The last decade has seen an increase in the number of digital health interventions designed to support adolescents and young adults (AYAs) with cancer. Objective: The objective of this review was to identify, characterize, and fully assess the quality, feasibility, and efficacy of existing digital health interventions developed specifically for AYAs, aged between 13 and 39 years, living with or beyond a cancer diagnosis. Methods: Searches were performed in PubMed, EMBASE, and Web of Science to identify digital health interventions designed specifically for AYA living with or beyond a cancer diagnosis. Data on the characteristics and outcomes of each intervention were synthesized. Results: A total of 4731 intervention studies were identified through the searches; 38 interventions (43 research papers) met the inclusion criteria. Most (20/38, 53%) were website-based interventions. Most studies focused on symptom management and medication adherence (15, 39%), behavior change (15, 39%), self-care (8, 21%), and emotional health (7, 18%). Most digital health interventions included multiple automated and communicative functions such as enriched information environments, automated follow-up messages, and access to peer support. Where reported (20, 53% of studies), AYAs’ subjective experience of using the digital platform was typically positive. The overall quality of the studies was found to be good (mean Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields scores >68%). Some studies reported feasibility outcomes (uptake, acceptability, and attrition) but were not sufficiently powered to comment on intervention effects. Conclusions: Numerous digital interventions have been developed and designed to support young people living with and beyond a diagnosis of cancer. However, many of these interventions have yet to be deployed, implemented, and evaluated at scale.

  • JMIR Cancer 2019;5(2):e12071

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  Emotional, Social, Psychological...

  Jul 22, 2019

  Experiences of Using a Consumer-Based Mobile Meditation App to Improve Fatigue in Myeloproliferative Patients: Qualitative Study

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  Authors List:

  • Jennifer Huberty  
  • Ryan Eckert  
  • Linda Larkey  
  • Lynda Joeman  
  • Ruben Mesa  

  Abstract:

  Background: Myeloproliferative neoplasm (MPN) patients suffer from long-term symptoms and reduced quality of life. Mindfulness meditation is a complementary therapy shown to be beneficial for alleviating a range of cancer-related symptoms; however, in-person meditation interventions are difficult for cancer patients to attend. Meditation via a mobile phone app represents a novel approach in MPN patients for delivering meditation. Objective: The study aimed to report MPN patients’ (ie, naïve or nearly naïve meditators) perceptions of meditation and explore their experiences in the context of using a mobile phone for meditation after participation in an 8-week consumer-based meditation app feasibility study. Methods: MPN patients (n=128) were recruited nationally through organizational partners and social media. Eligible and consented patients were enrolled into 1 of 4 groups, 2 that received varying orders of 2 consumer-based apps (10% Happier and Calm) and 2 that received one of the apps alone for the second 4 weeks of the 8-week intervention after an educational control condition. Participants were asked to perform 10 min per day of mobile phone-based meditation, irrespective of the app and order in which they received the apps. At the conclusion of the study, participants were asked whether they would like to participate in a 20-min phone interview comprising 9 to 10 questions to discuss their perceptions and experiences while using the mobile phone meditation apps. The interviews were transcribed verbatim and imported into NVivo 12 (QSR International) for coding and analysis, using a combination of deductive and inductive methods to organize the data, generate categories, and develop themes and subthemes. Results: A total of 48 MPN patients completed postintervention interviews, of which 29% (14/48) of the patients only used the 10% Happier app, 21% (10/48) of the patients only used the Calm app, and 46% (22/48) of the patients used both apps during the 8-week intervention. Themes identified in the analysis of interview data related to (1) perceptions of meditation before, during, and after the study, (2) perceptions of the Calm app, (3) perceptions of the 10% Happier app, (4) perceived impacts of using the meditation apps, (5) overall experiences of participating in the study, (6) recommendations surrounding meditation for other MPN patients, and (7) plans to continue meditation. Conclusions: The qualitative findings of this study suggest that MPN patients who are naïve or nearly naïve meditators perceived mobile phone meditation as enjoyable, preferred the Calm app over the 10% Happier app, perceived the Calm app as more appealing (eg, narrator’s voice and different meditations or background sounds offered), and perceived beneficial effects of meditation on mental health, sleep, fatigue, and pain. Future research is needed to better understand the efficacy of mobile phone meditation on MPN patient outcomes and meditation app design features that enhance uptake among its users.

  • JMIR Cancer 2019;5(2):e14292

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  Cancer Survivorship

  Jul 9, 2019

  Feasibility of a Mobile Phone App and Telephone Coaching Survivorship Care Planning Program Among Spanish-Speaking Breast Cancer Survivors

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  Authors List:

  • Anna María Nápoles  
  • Jasmine Santoyo-Olsson  
  • Liliana Chacón  
  • Anita L Stewart  
  • Niharika Dixit  
  • Carmen Ortiz  

  Abstract:

  Background: Spanish-speaking Latina breast cancer survivors experience disparities in knowledge of breast cancer survivorship care, psychosocial health, lifestyle risk factors, and symptoms compared with their white counterparts. Survivorship care planning programs (SCPPs) could help these women receive optimal follow-up care and manage their condition. Objective: This study aimed to evaluate the feasibility, acceptability, and preliminary efficacy of a culturally and linguistically suitable SCPP called the Nuevo Amanecer (New Dawn) Survivorship Care Planning Program for Spanish-speaking breast cancer patients in public hospital settings, approaching the end of active treatment. Methods: The 2-month intervention was delivered via a written bilingual survivorship care plan and booklet, Spanish-language mobile phone app with integrated activity tracker, and telephone coaching. This single-arm feasibility study used mixed methods to evaluate the intervention. Acceptability and feasibility were examined via tracking of implementation processes, debriefing interviews, and postintervention satisfaction surveys. Preliminary efficacy was assessed via baseline and 2-month interviews using structured surveys and pre- and postintervention average daily steps count based on activity tracker data. Primary outcomes were self-reported fatigue, health distress, knowledge of cancer survivorship care, and self-efficacy for managing cancer follow-up health care and self-care. Secondary outcomes were emotional well-being, depressive and somatic symptoms, and average daily steps. Results: All women (n=23) were foreign-born with limited English proficiency; 13 (57%) had an elementary school education or less, 16 (70%) were of Mexican origin, and all had public health insurance. Coaching calls lasted on average 15 min each (SD 3.4). A total of 19 of 23 participants (83%) completed all 5 coaching calls. The majority (n=17; 81%) rated the overall quality of the app as “very good” or “excellent” (all rated it as at least “good”). Women checked their daily steps graph on the app between 4.2 to 5.9 times per week. Compared with baseline, postintervention fatigue (B=–.26; P=.02; Cohen d=0.4) and health distress levels (B=–.36; P=.01; Cohen d=0.3) were significantly lower and knowledge of recommended follow-up care and resources (B=.41; P=.03; Cohen d=0.5) and emotional well-being improved significantly (B=1.42; P=.02; Cohen d=0.3); self-efficacy for managing cancer follow-up care did not change. Average daily steps increased significantly from 6157 to 7469 (B=1311.8; P=.02; Cohen d=0.5). Conclusions: We found preliminary evidence of program feasibility, acceptability, and efficacy, with significant 2-month improvements in fatigue, health distress, and emotional well-being and increased knowledge of recommended follow-up care and average daily steps. Tailored mobile phone and health coaching SCPPs could help to ensure equitable access to these services and improve symptoms and physical activity levels among Spanish-speaking Latina breast cancer survivors.

  • JMIR Cancer 2019;5(2):e13543

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  Doctor-Patient Communication on...

  Jul 2, 2019

  Providers’ Perceptions of Parental Human Papillomavirus Vaccine Hesitancy: Cross-Sectional Study

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  Authors List:

  • Jennifer Cunningham-Erves  
  • Tatsuki Koyama  
  • Yi Huang  
  • Jessica Jones  
  • Consuelo H Wilkins  
  • Lora Harnack  
  • Caree McAfee  
  • Pamela C Hull  

  Abstract:

  Background: Human papillomavirus (HPV) vaccine hesitancy among parents contributes to low vaccination coverage in adolescents. To improve health care provider communication and vaccine recommendation practices with hesitant parents, it is important to understand how providers perceive parental HPV vaccine hesitancy. Objective: This study aimed to characterize perceived reasons for parental HPV vaccine hesitancy and identify factors associated with perceived parental hesitancy among providers at community-based pediatric clinics. Methods: In 2018, providers in 23 community-based pediatric clinics in Tennessee were invited to complete a Web-based baseline survey as part of a larger quality improvement study focused on HPV vaccine uptake. These survey data were used for a cross-sectional, secondary data analysis. Scale scores ranging from 0 to 100 were calculated for provider self-efficacy (confidence in ability to recommend HPV vaccine), provider outcome expectations (expectations that recommendation will influence parents’ decisions), and perceived parental HPV vaccine hesitancy. Provider confidence in HPV vaccine safety and effectiveness were categorized as high versus low. Clinic-level exposures examined were clinic size and rural-urban location. Descriptive analyses were used to characterize perceived parental barriers by provider type. Mixed-effects linear regression models were fit taking one exposure variable at a time, whereas controlling for provider type, age, gender, and race to identify provider- and clinic-level factors associated with perceived parental barriers to HPV vaccination. Results: Of the 187 providers located in the 23 clinics, 137 completed the survey. The majority of physician providers were white and female, with a higher percentage of females among nurse practitioners (NPs) and physician assistants (PAs). The most common parental barriers to HPV vaccination perceived by providers were concerns about HPV vaccine safety (88%), child being too young (78%), low risk of HPV infection for child through sexual activity (70%), and mistrust in vaccines (59%). In adjusted mixed models, perceived parental HPV vaccine hesitancy was significantly associated with several provider-level factors: self-efficacy (P=.001), outcome expectations (P<.001), and confidence in HPV vaccine safety (P=.009). No significant associations were observed between perceived parental HPV vaccine hesitancy and clinic-level factors clinic size nor location. Conclusions: Researchers developing provider-focused interventions to reduce parental HPV vaccine hesitancy should consider addressing providers’ self-efficacy, outcome expectations, and confidence in HPV vaccine safety to help providers communicate more effectively with HPV vaccine hesitant parents.

  • JMIR Cancer 2019;5(2):e13832

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  Reviews on Innovations in Cancer

  Jun 10, 2019

  Oncofertility Decision Support Resources for Women of Reproductive Age: Systematic Review

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  Authors List:

  • Brittany Speller  
  • Selena Micic  
  • Corinne Daly  
  • Lebei Pi  
  • Tari Little  
  • Nancy N Baxter  

  Abstract:

  Background: Cancer treatments have the potential to cause infertility among women of reproductive age. Many cancer patients do not receive sufficient oncofertility information or referrals to reproductive specialists prior to starting cancer treatment. While health care providers cite lack of awareness on the available oncofertility resources, the majority of cancer patients use the internet as a resource to find additional information to supplement discussions with their providers. Objective: Our aim was to identify and characterize Web-based oncofertility decision aids and health education materials accessible for women of reproductive age with a diagnosis of any cancer. Methods: We searched five databases and the gray literature for the years 1994-2018. The developer and content information for identified resources was extracted. Each resource underwent a quality assessment. Results: We identified 31 open access resources including 4 decision aids and 27 health educational materials. The most common fertility preservation options listed in the resources included embryo (31/31, 100%), egg (31, 100%), and ovarian tissue freezing (30, 97%). Notably, approximately one-third (11, 35%) contained references and 5 (16%) had a reading level of grade 8 or below. Resources were of varying quality; two decision aids from Australia and the Netherlands, two booklets from Australia and the United Kingdom, and three websites from Canada and the United States rated as the highest quality. Conclusions: This comprehensive review characterizes numerous resources available to support patients and providers with oncofertility information, counseling, and decision making. More focus is required to improve the awareness and the access of existing resources among patients and providers. Providers can address patient information needs by leveraging or adapting existing resources to support clinical discussions and their specific patient population.

  • JMIR Cancer 2019;5(1):e12593

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  Questionnaire Mode and Participation...

  May 28, 2019

  Potential of Using Twitter to Recruit Cancer Survivors and Their Willingness to Participate in Nutrition Research and Web-Based Interventions: A...

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  Authors List:

  • Laura Keaver  
  • Aisling McGough  
  • Mengxi Du  
  • Winnie Chang  
  • Virginia Chomitz  
  • Jennifer D Allen  
  • Deanna J Attai  
  • Lisa Gualtieri  
  • Fang Fang Zhang  

  Abstract:

  Background: Social media is rapidly changing how cancer survivors search for and share health information and can potentially serve as a cost-effective channel to reach cancer survivors and invite them to participate in nutrition intervention programs. Objective: This study aimed to assess the feasibility of using Twitter to recruit cancer survivors for a web-based survey and assess their willingness to complete web-based nutrition surveys, donate biospecimens, and to be contacted about web-based nutrition programs. Methods: We contacted 301 Twitter accounts of cancer organizations, advocates, and survivors to request assistance promoting a web-based survey among cancer survivors. The survey asked respondents whether they would be willing to complete web-based nutrition or lifestyle surveys, donate biospecimens, and be contacted about web-based nutrition programs. Survey promotion rate was assessed by the percentage of Twitter accounts that tweeted the survey link at least once. Survey response was assessed by the number of survey respondents who answered at least 85% (26/30). We compared the characteristics of cancer survivors who responded to this survey with those who participated in the National Health and Nutrition Examination Survey (NHANES) 1999-2010 and evaluated factors associated with willingness to complete web-based surveys, donate biospecimens, and be contacted to participate in web-based nutrition programs among those who responded to the social media survey. Results: Over 10 weeks, 113 Twitter account owners and 165 of their followers promoted the survey, and 444 cancer survivors provided complete responses. Two-thirds of respondents indicated that they would be willing to complete web-based nutrition or lifestyle surveys (297/444, 67.0%) and to be contacted to participate in web-based nutrition interventions (294/444, 66.2%). The percentage of respondents willing to donate biospecimens were 59.3% (263/444) for oral swab, 52.1% (231/444) for urine sample, 37.9% (168/444) for blood sample, and 35.6% (158/444) for stool sample. Compared with a nationally representative sample of 1550 cancer survivors in NHANES, those who responded to the social media survey were younger (53.1 years vs 60.8 years; P<.001), more likely to be female (93.9% [417/444] vs 58.7% [909/1550]; P<.001), non-Hispanic whites (85.4% [379/444] vs 64.0% [992/1550]; P<.001), to have completed college or graduate school (30.1 [133/444] vs 19.9% [308/444]; P<.001), and to be within 5 years of their initial diagnosis (55.2% [244/444] vs 34.1% [528/1550]; P<.001). Survivors younger than 45 years, female, and non-Hispanic whites were more willing to complete web-based nutrition surveys than older (65+ years), male, and racial or ethnic minority survivors. Non-Hispanic whites and breast cancer survivors were more willing to donate biospecimens than those with other race, ethnicity or cancer types. Conclusions: Twitter could be a feasible approach to recruit cancer survivors into nutrition research and web-based interventions with potentially high yields. Specific efforts are needed to recruit survivors who are older, male, racial and ethnic minorities, and from socioeconomically disadvantaged groups when Twitter is used as a recruitment method.

  • JMIR Cancer 2019;5(1):e7850

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  Patient Education for Cancer

  May 13, 2019

  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...

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  Authors List:

  • Roxane Camail  
  • Bruno Kenfack  
  • Phuong Lien Tran  
  • Manuela Viviano  
  • Pierre-Marie Tebeu  
  • Liliane Temogne  
  • Mohamed Akaaboune
  • Eveline Tincho  
  • Joel Mbobda  
  • Rosa Catarino  
  • Pierre Vassilakos  
  • Patrick Petignat  

  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

  • JMIR Cancer 2019;5(1):e9798

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  Viewpoints on Innovations in Cancer...

  May 6, 2019

  Designing and Testing Apps to Support Patients With Cancer: Looking to Behavioral Science to Lead the Way

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  Authors List:

  • Lauren M Hamel  
  • Hayley S Thompson  
  • Terrance L Albrecht  
  • Felicity W K Harper  

  Abstract:

  Background: Behavioral science has a long and strong tradition of rigorous experimental and applied methodologies, which have produced several influential and far-reaching theoretical frameworks and have guided countless inquiries of human behavior in various contexts. In cancer care, behavioral scientists have established a firm foundation of research focused on understanding the experience of cancer and using that understanding to design and implement theory- and evidenced-based interventions to help patients cope with the cancer experience. Given the rich behavioral research base in oncology, behavioral scientists are ideally positioned to lead the integration of evidence-based science on behavior and behavior change into the development of smartphone apps supporting patients with cancer. Smartphone apps are being disseminated to patients with cancer with claims of being able to help them negotiate areas of vulnerability in their cancer experience. However, the vast majority of these apps are developed without the rigor and expertise of behavioral scientists. Objective: In this article, we have illustrated the importance of behavioral science leading the development and evaluation of apps to support patients with cancer by providing an illustrative scientific process that our team of behavioral scientists, patient stakeholders, medical oncologists, and software developers used to empirically design and evaluate 2 patient-focused apps: the Discussion of Cost App (DISCO App) and MyPatientPal. Methods: Using a focused literature review and a descriptive roadmap of our team’s process for designing and evaluating patient-focused behavioral apps for patients with cancer, we have demonstrated how behavioral scientists are integral to the development of empirically sound apps to help support patients with cancer. Specifically, we have illustrated the process by which our multidisciplinary team combined the established user-centered design principles and behavioral science theory and scientific rigor to design and evaluate 2 patient-focused apps. Results: On the basis of initial acceptability and feasibility testing among patients and providers, our team has demonstrated how critical behavioral science is for designing and evaluating app-based interventions for patients with cancer. Conclusions: Behavioral science can and should be coupled with user-centered design principles to provide theoretical guidance and the rigor of the scientific method, thereby adding the much-needed and critical evidence for these types of app-based interventions for patients with cancer.

  • JMIR Cancer 2019;5(1):e12317

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  Supporting Partners and Informal...

  May 3, 2019

  Impact of a Mobilized Stress Management Program (Pep-Pal) for Caregivers of Oncology Patients: Mixed-Methods Study

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  Authors List:

  • Alaina L Carr  
  • Jacqueline Jones  
  • Susan Mikulich Gilbertson  
  • Mark L Laudenslager  
  • Jean S Kutner  
  • Kristin Kilbourn  
  • Timothy S Sannes  
  • Benjamin W Brewer  
  • Elissa Kolva  
  • Tanisha Joshi  
  • Nicole Amoyal Pensak  

  Abstract:

  Background: Caregivers of patients with advanced diseases are known to have high levels of distress, including depression and anxiety. Recent research has focused on recognizing caregivers in need of psychosocial support to help them manage their distress. Evidenced-based technological interventions have the potential to aid caregivers in managing distress. Objective: The objective of our study was to describe caregiver perceptions of the usability and acceptability, and their suggestions for future adaptations, of a mobilized psychoeducation and skills-based intervention. Methods: This study was a part of a larger trial of a mobilized psychoeducation and skills-based intervention (Psychoeducation and Skills-Based Mobilized Intervention [Pep-Pal]) for caregivers of patients with advanced illness. This substudy used a mixed-methods analysis of quantitative data from all 26 intervention participants and qualitative data from 14 intervention caregivers who completed the Pep-Pal intervention. The qualitative semistructured individual interviews, which we conducted within the first 4 weeks after participants completed the intervention, assessed the acceptability and usability of Pep-Pal. Additionally, the qualitative interviews provided contextual evidence of how the intervention was helpful to interviewees in unanticipated ways. We conducted applied thematic analysis via independent review of transcripts to extract salient themes. Results: Overall, caregivers of patients with advanced cancer deemed Pep-Pal to be acceptable in all Web-based sessions except for Improving Intimacy. Caregivers perceived the program to be of use across the areas they needed and in others that they had not anticipated. Caregiver recommendations of key changes for the program were to include more variety in caregiver actors in sessions, change the title of Improving Intimacy to Improving Relationships, provide an audio-only option in addition to video, and change the format of the mobilized website program to a stand-alone mobile app. Conclusions: The valuable feedback in key areas from individual interviews will be integrated into the final version of Pep-Pal that will be tested in a fully powered randomized clinical trial. Trial Registration: ClinicalTrials.gov NCT03002896; https://clinicaltrials.gov/ct2/show/NCT03002896 (Archived by WebCite at http://www.webcitation.org/76eThwaei)

  • JMIR Cancer 2019;5(1):e11406

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  Emotional, Social, Psychological...

  May 2, 2019

  When Chatbots Meet Patients: One-Year Prospective Study of Conversations Between Patients With Breast Cancer and a Chatbot

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  Authors List:

  • Benjamin Chaix  
  • Jean-Emmanuel Bibault  
  • Arthur Pienkowski  
  • Guillaume Delamon  
  • Arthur Guillemassé  
  • Pierre Nectoux  
  • Benoît Brouard  

  Abstract:

  Background: A chatbot is a software that interacts with users by simulating a human conversation through text or voice via smartphones or computers. It could be a solution to follow up with patients during their disease while saving time for health care providers. Objective: The aim of this study was to evaluate one year of conversations between patients with breast cancer and a chatbot. Methods: Wefight Inc designed a chatbot (Vik) to empower patients with breast cancer and their relatives. Vik responds to the fears and concerns of patients with breast cancer using personalized insights through text messages. We conducted a prospective study by analyzing the users’ and patients’ data, their usage duration, their interest in the various educational contents proposed, and their level of interactivity. Patients were women with breast cancer or under remission. Results: A total of 4737 patients were included. Results showed that an average of 132,970 messages exchanged per month was observed between patients and the chatbot, Vik. Thus, we calculated the average medication adherence rate over 4 weeks by using a prescription reminder function, and we showed that the more the patients used the chatbot, the more adherent they were. Patients regularly left positive comments and recommended Vik to their friends. The overall satisfaction was 93.95% (900/958). When asked what Vik meant to them and what Vik brought them, 88.00% (943/958) said that Vik provided them with support and helped them track their treatment effectively. Conclusions: We demonstrated that it is possible to obtain support through a chatbot since Vik improved the medication adherence rate of patients with breast cancer.

  • JMIR Cancer 2019;5(1):e12856

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  Emotional, Social, Psychological...

  Apr 17, 2019

  Analyzing Empowerment Processes Among Cancer Patients in an Online Community: A Text Mining Approach

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  Authors List:

  • Suzan Verberne  
  • Anika Batenburg  
  • Remco Sanders  
  • Mies van Eenbergen  
  • Enny Das  
  • Mattijs S Lambooij  

  Abstract:

  Background: Peer-to-peer online support groups and the discussion forums in these groups can help patients by providing opportunities for increasing their empowerment. Most previous research on online empowerment and online social support uses qualitative methods or questionnaires to gain insight into the dynamics of online empowerment processes. Objective: The overall goal of this study was to analyze the presence of the empowerment processes in the online peer-to-peer communication of people affected by cancer, using text mining techniques. Use of these relatively new methods enables us to study social processes such as empowerment on a large scale and with unsolicited data. Methods: The sample consisted of 5534 messages in 1708 threads, written by 2071 users of a forum for cancer patients and their relatives. We labeled the posts in our sample with 2 types of labels: labels referring to empowerment processes and labels denoting psychological processes. The latter were identified using the Linguistic Inquiry and Word Count (LIWC) method. Both groups of labels were automatically assigned to posts. Automatic labeling of the empowerment processes was done by text classifiers trained on a manually labeled subsample. For the automatic labeling of the LIWC categories, we used the Dutch version of the LIWC consisting of a total of 66 word categories that are assigned to text based on occurrences of words in the text. After the automatic labeling with both types of labels, we investigated (1) the relationship between empowerment processes and the intensity of online participation, (2) the relationship between empowerment processes and the LIWC categories, and (3) the differences between patients with different types of cancer. Results: The precision of the automatic labeling was 85.6%, which we considered to be sufficient for automatically labeling the complete corpus and doing further analyses on the labeled data. Overall, 62.94% (3482/5532) of the messages contained a narrative, 23.83% (1318/5532) a question, and 27.49% (1521/5532) informational support. Emotional support and references to external sources were less frequent. Users with more posts more often referred to an external source and more often provided informational support and emotional support (Kendall τ>0.2; P<.001) and less often shared narratives (Kendall τ=−0.297; P<.001). A number of LIWC categories are significant predictors for the empowerment processes: words expressing assent (ok and yes) and emotional processes (expressions of feelings) are significant positive predictors for emotional support (P=.002). The differences between patients with different types of cancer are small. Conclusions: Empowerment processes are associated with the intensity of online use. The relationship between linguistic analyses and empowerment processes indicates that empowerment processes can be identified from the occurrences of specific linguistic cues denoting psychological processes.

  • JMIR Cancer 2019;5(1):e9887

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