%0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 2 %P e25056 %T Personal Accounts of Young-Onset Colorectal Cancer Organized as Patient-Reported Data: Protocol for a Mixed Methods Study %A Lamprell,Klay %A Fajardo Pulido,Diana %A Tran,Yvonne %A Nic Giolla Easpaig,Bróna %A Liauw,Winston %A Arnolda,Gaston %A Braithwaite,Jeffrey %+ Australian Institute of Health Innovation, Macquarie University, Level 6, 75 Talavera Road, New South Wales, Sydney, 2109, Australia, 61 2 9850 2472, klay.lamprell@mq.edu.au %K colorectal cancer %K PROMs %K young-onset cancer %K cancer %K patient reported outcome %D 2021 %7 26.2.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Young-onset colorectal cancer is a contemporary issue in need of substantial research input. The incidence of colorectal cancer in adults younger than 50 years is rising in contrast to the decreasing incidence of this cancer in older adults. People with young-onset colorectal cancer may be at that stage of life in which they are establishing their careers, building relationships with long-term partners, raising children, and assembling a financial base for the future. A qualitative study designed to facilitate triangulation with extant quantitative patient-reported data would contribute the first comprehensive resource for understanding how this distinct patient population experiences health services and the outcomes of care throughout the patient pathway. Objective: The aim of this study was to undertake a mixed-methods study of qualitative patient-reported data on young-onset colorectal cancer experiences and outcomes. Methods: This is a study of web-based unsolicited patient stories recounting experiences of health services and clinical outcomes related to young-onset colorectal cancer. Personal Recollections Organized as Data (PROD) is a novel methodology for understanding patients’ health experiences in order to improve care. PROD pivots qualitative data collection and analysis around the validated domains and dimensions measured in patient-reported outcome and patient-reported experience questionnaires. PROD involves 4 processes: (1) classifying attributes of the contributing patients, their disease states, their routes to diagnosis, and the clinical features of their treatment and posttreatment; (2) coding texts into the patient-reported experience and patient-reported outcome domains and dimensions, defined a priori, according to phases of the patient pathway; (3) thematic analysis of content within and across each domain; and (4) quantitative text analysis of the narrative content. Results: Relevant patient stories have been identified, and permission has been obtained for use of the texts in primary research. The approval for this study was granted by the Macquarie University Human Research Ethics Committee in June 2020. The analytical framework was established in September 2020, and data collection commenced in October 2020. We will complete the analysis in March 2021 and we aim to publish the results in mid-2021. Conclusions: The findings of this study will identify areas for improvement in the PROD methodology and inform the development of a large-scale study of young-onset colorectal cancer patient narratives. We believe that this will be the first qualitative study to identify and describe the patient pathway from symptom self-identification to help-seeking through to diagnosis, treatment, and to survivorship or palliation for people with young-onset colorectal cancer. International Registered Report Identifier (IRRID): DERR1-10.2196/25056 %M 33635274 %R 10.2196/25056 %U https://www.researchprotocols.org/2021/2/e25056 %U https://doi.org/10.2196/25056 %U http://www.ncbi.nlm.nih.gov/pubmed/33635274 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 9 %N 2 %P e18288 %T Acceptability of a Mobile Health Behavior Change Intervention for Cancer Survivors With Obesity or Overweight: Nested Mixed Methods Study Within a Randomized Controlled Trial %A Groarke,Jenny M %A Richmond,Janice %A Mc Sharry,Jenny %A Groarke,AnnMarie %A Harney,Owen M %A Kelly,Mary Grace %A Walsh,Jane C %+ Centre for Improving Health-Related Quality of Life, School of Psychology, Queen's University Belfast, 18-30 Malone Road, Belfast, BT71NN, United Kingdom, 44 28 90974886, j.groarke@qub.ac.uk %K mHealth %K self-management %K text messaging %K activity tracker %K exercise %K diet %K overweight %K obesity %K cancer survivors %K qualitative research %K mobile phone %D 2021 %7 16.2.2021 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: A significant proportion of cancer survivors have overweight or obesity. Although this has negative implications for health, weight management is not a standard component of oncology aftercare. Mobile health (mHealth) technology, in combination with behavior change techniques (BCTs), has the potential to support positive lifestyle changes. Few studies have been carried out with cancer survivors; therefore, the acceptability of these tools and techniques requires further investigation. Objective: The aim of this study is to examine the acceptability of a behavior change intervention using mHealth for cancer survivors with a BMI of 25 or more and to gather constructive feedback from participants. Methods: The intervention consisted of educational sessions and an 8-week physical activity goal setting intervention delivered using mobile technology (ie, Fitbit activity monitor plus SMS contact). In the context of a two-arm randomized controlled trial, semistructured interviews were conducted to assess the retrospective acceptability of the intervention from the perspective of the recipients. The theoretical framework for the acceptability of health care interventions was used to inform a topic guide. The interviews were transcribed and analyzed using thematic analysis. A quantitative survey was also conducted to determine the acceptability of the intervention. A total of 13 participants were interviewed, and 36 participants completed the quantitative survey. Results: The results strongly support the acceptability of the intervention. The majority of the survey respondents held a positive attitude toward the intervention (35/36, 97%). In qualitative reports, many of the intervention components were enjoyed and the mHealth components (ie, Fitbit and goal setting through text message contact) were rated especially positively. Responses were mixed as to whether the burden of participating in the intervention was high (6/36, 17%) or low (5/36, 14%). Participants perceived the intervention as having high efficacy in improving health and well-being (34/36, 94%). Most respondents said that they understood how the intervention works (35/36, 97%), and qualitative data show that participants’ understanding of the aim of the intervention was broader than weight management and focused more on moving on psychologically from cancer. Conclusions: On the basis of the coherence of responses with theorized aspects of intervention acceptability, we are confident that this intervention using mHealth and BCTs is acceptable to cancer survivors with obesity or overweight. Participants made several recommendations concerning the additional provision of social support. Future studies are needed to assess the feasibility of delivery in clinical practice and the acceptability of the intervention to those delivering the intervention. International Registered Report Identifier (IRRID): RR2-10.2196/13214 %M 33591290 %R 10.2196/18288 %U http://mhealth.jmir.org/2021/2/e18288/ %U https://doi.org/10.2196/18288 %U http://www.ncbi.nlm.nih.gov/pubmed/33591290 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 1 %P e25317 %T Physical Activity, Mental Health, and Technology Preferences to Support Cancer Survivors During the COVID-19 Pandemic: Cross-sectional Study %A Faro,Jamie M %A Mattocks,Kristin M %A Nagawa,Catherine S %A Lemon,Stephenie C %A Wang,Bo %A Cutrona,Sarah L %A Sadasivam,Rajani S %+ Division of Health Informatics and Implementation Science, Department of Population and Quantitative Health Sciences, University of Massachusetts Medical School, 368 Plantation St, Worcester, MA, 01605, United States, 1 617 828 8093, Jamie.faro@umassmed.edu %K cancer %K COVID-19 %K digital %K physical activity %K support %K technology %D 2021 %7 3.2.2021 %9 Original Paper %J JMIR Cancer %G English %X Background: COVID-19 has had significant health-related and behavioral impacts worldwide. Cancer survivors (hereafter referred to as “survivors”) are particularly prone to behavioral changes and are encouraged to be more vigilant and observe stricter social distancing measures. Objective: We explored (1) changes in physical activity and sedentary behaviors since the onset of COVID-19, along with changes in mental health status, and (2) alternative strategies to support survivors’ physical activity and social health during and after COVID-19, along with the role of digital health in such strategies. Methods: A questionnaire was distributed among survivors participating (currently or previously) in the community-based physical activity program LIVESTRONG at the Young Men’s Christian Association (YMCA), from 3 sites outside an urban area in Massachusetts. Questions addressed pre–COVID-19 vs current changes in physical activity and sedentary behavior. Anxiety and depression were assessed using the 2-item Generalized Anxiety Disorder scale (GAD-2) and 2-item Patient Health Questionnaire (PHQ-2), and scores ≥3 indicated a clinical diagnosis of anxiety or depression, respectively. Digital health preferences were assessed through closed-ended questions. Open-ended responses addressing other preferences for physical activity programs and social support were analyzed, coded, and categorized into themes. Results: Among 61 participants (mean age 62 [SD 10.4] years; females: 51/61 [83.6%]), 67.2% (n=41) reported decreased physical activity and 67.2% (n=41) reported prolonged sitting times since the onset of COVID-19. Further, 24.6% (n=15) and 26.2% (n=16) met the GAD-2 and PHQ-2 criteria for clinical anxiety and depression, respectively. All participants owned a cellphone; 90% (n=54) owned a smartphone. Preferences for physical activity programs (n=28) included three themes: (1) use of digital or remote platforms (Zoom, other online platforms, and video platforms), (2) specific activities and locations (eg, outdoor activities, walking, gardening, biking, and physical activities at the YMCA and at senior centers), and (3) importance of social support regardless of activity type (eg, time spent with family, friends, peers, or coaches). The survey revealed a mean score of 71.8 (SD 21.4; scale 0-100) for the importance of social support during physical activity programs. Social support preferences (n=15) revealed three themes: (1) support through remote platforms (eg, texting, Zoom, phone calls, emails, and Facebook), (2) tangible in-person support (YMCA and senior centers), and (3) social support with no specific platform (eg, small gatherings and family or friend visits). Conclusions: Physical activity and mental health are critical factors for the quality of life of survivors, and interventions tailored to their activity preferences are necessary. Digital or remote physical activity programs with added social support may help address the ongoing needs of survivors during and after the pandemic. %M 33471776 %R 10.2196/25317 %U http://cancer.jmir.org/2021/1/e25317/ %U https://doi.org/10.2196/25317 %U http://www.ncbi.nlm.nih.gov/pubmed/33471776 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 1 %P e21256 %T Metabolic Syndrome Parameters, Determinants, and Biomarkers in Adult Survivors of Childhood Cancer: Protocol for the Dutch Childhood Cancer Survivor Study on Metabolic Syndrome (Dutch LATER METS) %A Pluimakers,Vincent %A Fiocco,Marta %A van Atteveld,Jenneke %A Hobbelink,Monique %A Bresters,Dorine %A Van Dulmen-den Broeder,Eline %A Van der Heiden-van der Loo,Margriet %A Janssens,Geert O %A Kremer,Leontien %A Loonen,Jacqueline %A Louwerens,Marloes %A Van der Pal,Helena %A Ronckers,Cécile %A Van Santen,Hanneke %A Versluys,Birgitta %A De Vries,Andrica %A Van den Heuvel-Eibrink,Marry %A Neggers,Sebastian %+ Princess Maxima Center for Pediatric Oncology, Heidelberglaan 25, Utrecht, 3584CS, Netherlands, 31 613348669, v.g.pluimakers@prinsesmaximacentrum.nl %K metabolic syndrome %K childhood cancer survivor %K Dutch Childhood Cancer Survivor Study %K methodology %K Dutch LATER METS %D 2021 %7 27.1.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Potential late effects of treatment for childhood cancer include adiposity, insulin resistance, dyslipidemia, and hypertension. These risk factors cluster together as metabolic syndrome and increase the risk for development of diabetes mellitus and cardio- and cerebrovascular disease. Knowledge on risk factors, timely diagnosis, and preventive strategies is of importance to prevent cardio- and cerebrovascular complications and improve quality of life. Currently, no national cohort studies on the prevalence and determinants of metabolic syndrome in childhood cancer survivors, including biomarkers and genetic predisposition, are available. Objective: The objectives of the Dutch LATER METS study are to assess 1) the prevalence and risk factors of metabolic syndrome and its separate components, and 2) the potential diagnostic and predictive value of additional biomarkers for surveillance of metabolic syndrome in the national cohort of adult long-term survivors of childhood cancer. Methods: This is a cross-sectional study based on recruitment of all survivors treated in the Netherlands between 1963 and 2002. Metabolic syndrome will be classified according to the definitions of the third Adult Treatment Panel Report of the National Cholesterol Education Program as well as the Joint Interim Statement and compared to reference data. Dual-energy x-ray absorptiometry scans were performed to assess body composition in more detail. The effect of patient characteristics, previous treatment, and genetic variation on the risk of metabolic syndrome will be assessed. The diagnostic and predictive value of novel biomarkers will be tested. Results: Patient accrual started in 2016 and lasted until April 2020. A total of 2380 survivors from 7 pediatric oncology hospitals have participated. From July 2020, biomarker testing, single nucleotide polymorphism analysis, and data analysis will be performed. Conclusions: The Dutch LATER METS study will provide knowledge on clinical and genetic determinants of metabolic syndrome and the diagnostic value of biomarkers in childhood cancer survivors. The results of this study will be used to optimize surveillance guidelines for metabolic syndrome in survivors based on enhanced risk stratification and screening strategies. This will improve diagnosis of metabolic syndrome and prevent complications. International Registered Report Identifier (IRRID): DERR1-10.2196/21256 %M 32750002 %R 10.2196/21256 %U https://www.researchprotocols.org/2021/1/e21256 %U https://doi.org/10.2196/21256 %U http://www.ncbi.nlm.nih.gov/pubmed/32750002 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 1 %P e21851 %T Health-Related Quality of Life in European Childhood Cancer Survivors: Protocol for a Study Within PanCareLIFE %A Calaminus,Gabriele %A Baust,Katja %A Berger,Claire %A Byrne,Julianne %A Binder,Harald %A Casagranda,Leonie %A Grabow,Desiree %A Grootenhuis,Martha %A Kaatsch,Peter %A Kaiser,Melanie %A Kepak,Tomas %A Kepáková,Kateřina %A Kremer,Leontien C M %A Kruseova,Jarmila %A Luks,Ales %A Spix,Claudia %A van den Berg,Marleen %A van den Heuvel-Eibrink,Marry M M %A van Dulmen-den Broeder,Eline %A Kuonen,Rahel %A Sommer,Grit %A Kuehni,Claudia %+ Department of Paediatric Haematology and Oncology, University Hospital Bonn, Venusberg-Campus 1, Bonn, 53127, Germany, 49 228 287 ext 33389, gabriele.calaminus@ukbonn.de %K children %K adolescents %K neoplasms %K quality of life %K health status %K Europe %K epidemiology %K survivors of childhood cancer %D 2021 %7 25.1.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Survival after childhood cancer has improved to more than 80% during the last few years, leading to an increased number of childhood cancer survivors. Cancer itself, or its treatment, may cause chronic health conditions, including somatic and mental sequelae, which may affect survivors’ health-related quality of life (HRQoL). Objective: The project PanCareLIFE aims to establish a large database with comprehensive data on childhood cancer survivors from different European countries, including data on HRQoL. Within PanCareLIFE, this study aims to describe HRQoL in survivors, investigate predictors of HRQoL, and describe the association of HRQoL with hearing and female fertility impairment. This paper describes the design of the HRQoL study, the origin of data, strategies for data collection, and sampling characteristics of survivors from each contributing country. Methods: A total of 6 institutions from 5 European countries (the Czech Republic, France, Germany, the Netherlands, and Switzerland) provided data on HRQoL assessed with the Short Form 36 and on relevant predictors. The central PanCareLIFE data center aggregated the data and harmonized the variables between the institutions. Survivors were eligible if they received a diagnosis of cancer according to the 12 main groups of the International Classification of Childhood Cancer, 3rd edition, or Langerhans cell histiocytosis; were aged ≤18 years at the time of diagnosis; were residents of the respective country at the time of diagnosis; had survived ≥5 years after cancer diagnosis; were aged ≥18 years at the time of the questionnaire survey; and did not refuse to registration in the national or local childhood cancer cohort. Results: We identified 24,993 eligible survivors. Of those, 19,268 survivors received a questionnaire and 9871 survivors participated, resulting in response rates of 9871/24,993 (39.50%) of eligible survivors and of 9871/19,268 (51.23%) invited survivors. Most participants were diagnosed with cancer between the ages of 10 and 14 years (3448/9871, 34.93%) or <5 years (3201/9871, 32.43%). The median age was 8 years. Of the 9871 participants, 3157 (31.97%) were survivors of leukemia, 2075 (21.02%) lymphoma, and 1356 (13.7%) central nervous system (CNS) tumors. Most participants (9225/9871, 93.46%) had no history of a subsequent tumor; 77.45% (7645/9871) received chemotherapy with or without other treatments. More than half (5460/9871, 55.31%) were aged 25 to 34 years at the time of the HRQoL study. Participating survivors differed from nonparticipants; participants were more often women, survivors of leukemia or lymphoma, and less frequently, survivors of CNS tumors than nonparticipants. Conclusions: PanCareLIFE successfully assessed HRQoL and its predictors in 9871 European survivors of childhood cancer. This large population will permit detailed investigations of HRQoL after childhood cancer, particularly the impact of hearing and female fertility impairment on HRQoL. International Registered Report Identifier (IRRID): RR1-10.2196/21851 %M 33492237 %R 10.2196/21851 %U http://www.researchprotocols.org/2021/1/e21851/ %U https://doi.org/10.2196/21851 %U http://www.ncbi.nlm.nih.gov/pubmed/33492237 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 1 %P e20841 %T A Decision Aid Intervention for Family Building After Cancer: Developmental Study on the Initial Steps to Consider When Designing a Web-Based Prototype %A Benedict,Catherine %A Dauber-Decker,Katherine L %A King,D'Arcy %A Hahn,Alexandria %A Ford,Jennifer S %A Diefenbach,Michael %+ Stanford University School of Medicine, 401 Quarry Road, Palo Alto, CA, 94305-5718, United States, 1 2012077117, cbenedict@stanford.edu %K patient-centered care %K user-centered design %K decision support techniques %K decision aid %K cancer %K fertility %K internet-based intervention %K web-based intervention %K mobile phone %K psychosocial intervention %D 2021 %7 22.1.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: An important aspect of patient-centered care involves ensuring that patient-directed resources are usable, understandable, and responsive to patients’ needs. A user-centered design refers to an empathy-based framework and an iterative design approach for developing a product or solution that is based on an in-depth understanding of users’ needs, values, abilities, and limitations. Objective: This study presents the steps taken to develop a prototype for a patient resource for young women who have completed treatment for gonadotoxic cancer to support their decision making about follow-up fertility care and family building. Methods: User-centered design practices were used to develop Roadmap to Parenthood, a decision aid (DA) website for family building after cancer. A multidisciplinary steering group was assembled and input was provided. Guidelines from the International Patient DA Society and the Ottawa Decision Support Framework were used throughout the development process. In addition, guidelines for developing health DAs with respect to patient diversity and health literacy were also followed. Results: The Roadmap to Parenthood DA website prototype was systematically and iteratively developed. An extensive process of designing and developing solutions from the perspective of the end user was followed. The steps taken included formative work to identify user needs; determining goals, format, and delivery; design processes (eg, personas, storyboards, information architecture, user journey mapping, and wireframing); and content development. Additional design considerations addressed the unique needs of this patient population, including the emotional experiences related to this topic and decision-making context wherein decisions could be considered iteratively while involving a multistep process. Conclusions: The design strategies presented in this study describe important steps in the early phases of developing a user-centered resource, which will enhance the starting point for usability testing and further design modifications. Future research will pilot test the DA and a planning tool, and evaluate improvement in the decisional conflict regarding family building after cancer. Consistent with a patient-centered approach to health care, the strategies described here may be generalized and applied to the development of other patient resources and clinical contexts to optimize usability, empathy, and user engagement. %M 33480848 %R 10.2196/20841 %U http://formative.jmir.org/2021/1/e20841/ %U https://doi.org/10.2196/20841 %U http://www.ncbi.nlm.nih.gov/pubmed/33480848 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 1 %P e18396 %T Cardiovascular Assessment Tool for Breast Cancer Survivors and Oncology Providers: Usability Study %A Weaver,Kathryn E %A Klepin,Heidi D %A Wells,Brian J %A Dressler,Emily V %A Winkfield,Karen M %A Lamar,Zanetta S %A Avery,Tiffany P %A Pajewski,Nicholas M %A Hundley,W Gregory %A Johnson,Aimee %A Davidson,Eleanor C %A Lopetegui,Marcelo %A Foraker,Randi E %+ Institute for Informatics, Washington University in St Louis School of Medicine, 600 S Taylor Avenue, Suite 102, Campus Box 8102, St Louis, MO, 63110, United States, 1 314 273 2211, randi.foraker@wustl.edu %K electronic health records %K clinical decision support %K usability testing %K cardiovascular diseases %K cancer survivors %K breast cancer %D 2021 %7 21.1.2021 %9 Original Paper %J JMIR Cancer %G English %X Background: Cardiovascular health is of increasing concern to breast cancer survivors and their health care providers, as many survivors are more likely to die from cardiovascular disease than cancer. Implementing clinical decision support tools to address cardiovascular risk factor awareness in the oncology setting may enhance survivors’ attainment or maintenance of cardiovascular health. Objective: We sought to evaluate survivors’ awareness of cardiovascular risk factors and examine the usability of a novel electronic health record enabled cardiovascular health tool from the perspective of both breast cancer survivors and oncology providers. Methods: Breast cancer survivors (n=49) recruited from a survivorship clinic interacted with the cardiovascular health tool and completed pre and posttool assessments about cardiovascular health knowledge and perceptions of the tool. Oncologists, physician assistants, and nurse practitioners (n=20) who provide care to survivors also viewed the cardiovascular health tool and completed assessments of perceived usability and acceptability. Results: Enrolled breast cancer survivors (84% White race, 4% Hispanic ethnicity) had been diagnosed 10.8 years ago (SD 6.0) with American Joint Committee on Cancer stage 0, I, or II (45/49, 92%). Prior to viewing the tool, 65% of survivors (32/49) reported not knowing their level for one or more cardiovascular health factors (range 0-4). On average, only 45% (range 0%-86%) of survivors’ known cardiovascular health factors were at an ideal level. More than 50% of survivors had ideal smoking status (45/48, 94%) or blood glucose level (29/45, 64%); meanwhile, less than 50% had ideal blood pressure (12/49, 24%), body mass index (12/49, 24%), cholesterol level (17/35, 49%), diet (7/49, 14%), and physical activity (10/49. 20%). More than 90% of survivors thought the tool was easy to understand (46/47, 98%), improved their understanding (43/47, 91%), and was helpful (45/47, 96%); overall, 94% (44/47 survivors) liked the tool. A majority of survivors (44/47, 94%) thought oncologists should discuss cardiovascular health during survivorship care. Most (12/20, 60%) oncology providers (female: 12/20, 60%; physicians: 14/20, 70%) had been practicing for more than 5 years. Most providers agreed the tool provided useful information (18/20, 90%), would help their effectiveness (18/20, 90%), was easy to use (20/20, 100%), and presented information in a useful format (19/20, 95%); and 85% of providers (17/20) reported they would use the tool most or all of the time when providing survivorship care. Conclusions: These usability data demonstrate acceptability of a cardiovascular health clinical decision support tool in oncology practices. Oncology providers and breast cancer survivors would likely value the integration of such apps in survivorship care. By increasing awareness and communication regarding cardiovascular health, electronic health record–enabled tools may improve survivorship care delivery for breast cancer and ultimately patient outcomes. %M 33475511 %R 10.2196/18396 %U http://cancer.jmir.org/2021/1/e18396/ %U https://doi.org/10.2196/18396 %U http://www.ncbi.nlm.nih.gov/pubmed/33475511 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 6 %N 2 %P e17538 %T Patterns of Use of Smartphone-Based Interventions Among Latina Breast Cancer Survivors: Secondary Analysis of a Pilot Randomized Controlled Trial %A Baik,Sharon H %A Oswald,Laura B %A Buscemi,Joanna %A Buitrago,Diana %A Iacobelli,Francisco %A Perez-Tamayo,Alejandra %A Guitelman,Judith %A Penedo,Frank J %A Yanez,Betina %+ Department of Supportive Care Medicine, City of Hope, 1500 E Duarte Rd, Duarte, CA, 91010, United States, 1 626 256 4673, shbaik@coh.org %K breast cancer %K cancer survivorship %K Hispanics/Latinas %K eHealth %K psychosocial intervention %K mobile phone %D 2020 %7 8.12.2020 %9 Original Paper %J JMIR Cancer %G English %X Background: Latina breast cancer survivors experience poorer health-related quality of life (HRQoL), greater symptom burden, and more psychosocial needs compared to non-Latina breast cancer survivors. eHealth platforms such as smartphone apps are increasingly being used to deliver psychosocial interventions to cancer survivors. However, few psychosocial eHealth interventions have been developed specifically for Latina breast cancer survivors. Further, little is known about how Latinas, in general, engage with eHealth interventions and whether specific participant characteristics are associated with app use in this population. We evaluated the use of 2 culturally informed, evidence-based smartphone apps for Latina breast cancer survivors—one that was designed to improve HRQoL and reduce symptom burden (My Guide) and the other to promote healthy lifestyle behaviors (My Health). Objective: The objectives of our study were to explore the patterns of use of the My Guide intervention app and My Health attention-control app among Latina breast cancer survivors. Methods: Eighty Latina breast cancer survivors were randomized to use the My Guide or My Health app for 6 weeks. Assessments were collected at baseline (T1), immediately after the 6-week intervention (T2), and 2 weeks after T2 (T3). Specific study outcomes included subdomains of HRQoL, symptom burden, cancer-specific distress, cancer-relevant self-efficacy, and breast cancer knowledge. Results: On average, participants used their assigned app for more than 1 hour per week. Sociodemographic or psychological characteristics were not significantly associated with app use, except for employment status in the My Health group. Content related to common physical and emotional symptoms of breast cancer survivors as well as recommendations for nutrition and physical activity were most frequently accessed by My Guide and My Health participants, respectively. Lastly, clinically meaningful improvements were demonstrated in breast cancer well-being among low app users (ie, <60 minutes of use/week) of My Guide and social well-being among high app users (ie, ≥60 minutes of use/week) of My Health. Conclusions: The favorable rates of participant use across both apps suggest that Latina breast cancer survivors are interested in the content delivered across both My Guide and My Health. Furthermore, since sociodemographic variables, excluding employment status, and baseline HRQoL (psychological variable) were not related to app use, My Guide and My Health may be accessible to diverse Latina breast cancer survivors. Trial Registration: ClinicalTrials.gov NCT03645005; https://clinicaltrials.gov/ct2/show/NCT03645005 %M 33289669 %R 10.2196/17538 %U http://cancer.jmir.org/2020/2/e17538/ %U https://doi.org/10.2196/17538 %U http://www.ncbi.nlm.nih.gov/pubmed/33289669 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 9 %N 12 %P e24264 %T A Digital Program (Hope) for People Living With Cancer During the COVID-19 Pandemic: Protocol for a Feasibility Randomized Controlled Trial %A Wright,Hayley %A Martin,Faith %A Clyne,Wendy %A Clark,Cain C T %A McGillion,Michael %A Matouskova,Gabriela %A Turner,Andrew %+ Centre for Intelligent Healthcare, Faculty of Health and Life Sciences, Coventry University, Richard Crossman Building, Jordan Well, Coventry, CV1 5DE, United Kingdom, 44 2477657498, hsx116@coventry.ac.uk %K self-management %K survivorship %K cancer %K feasibility %K randomized controlled trial %K COVID-19 %K protocol %K digital health %K intervention %D 2020 %7 4.12.2020 %9 Protocol %J JMIR Res Protoc %G English %X Background: During the COVID-19 lockdown period in the United Kingdom that began on March 23, 2020, more than a quarter of a million people with cancer reported worsening mental health. Help to Overcome Problems Effectively (Hope) is a self-management program for people with cancer, designed to provide support for distress, unmet needs, and poor psychological health. In light of social distancing during the COVID-19 pandemic, digital delivery of the Hope Programme has become ever more vital for people with cancer. Previous pre-post studies of the digital Hope Programme have found reduced anxiety and depression and improved well-being for people with cancer. However, evaluation of this evidence has been limited by the lack of a control group in these previous studies. Objective: We now present a protocol for a feasibility randomized controlled trial of the digital Hope Programme for people with cancer during the COVID-19 pandemic. Primary outcomes will be recruitment, dropout, and adherence rates, and estimations of sample and effect size. To detect signals of efficacy, secondary outcomes will be participant mental health and well-being. Methods: Participants will be recruited by Macmillan Cancer Support (MCS) through their social media networks. The study will employ a feasibility wait-list randomized controlled trial (RCT) design, with people with cancer being randomized to join the digital Hope Programme immediately (intervention group [IG]) or join a 6-week waiting list (wait-list control group [WLCG]) with a 1:1 allocation ratio. Participants will complete digital measures of depression, anxiety, mental well-being, and confidence in managing their own health. Online questionnaires will be administered preprogram and 6 weeks postprogram. Results: All people who had requested access to the Hope Programme from MCS (N=61) will be invited to participate in the trial. Baseline data collection commenced in April 2020, and the Hope Programme began for the IG in May 2020 and for the WLCG in June 2020. Postprogram data collection was completed by the end of August 2020. Conclusions: This feasibility study will provide data to inform the design of a future definitive trial. Wider-scale provision of the digital Hope Programme has potential to improve the lives of thousands of people with cancer and reduce the burden on health care providers during these unprecedented times. Trial Registration: ISRCTN Registry ISRCTN79623250; http://www.isrctn.com/ISRCTN79623250 International Registered Report Identifier (IRRID): DERR1-10.2196/24264 %M 33237877 %R 10.2196/24264 %U https://www.researchprotocols.org/2020/12/e24264 %U https://doi.org/10.2196/24264 %U http://www.ncbi.nlm.nih.gov/pubmed/33237877 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 9 %N 12 %P e23414 %T Exploring Interactive Survivorship Care Plans to Support Breast Cancer Survivors: Protocol for a Randomized Controlled Trial %A Kapoor,Akshat %A Nambisan,Priya %+ Consumer Health Informatics Lab, Department of Health Services and Information Management, East Carolina University, 600 Moye Blvd MS 668, Greenville, NC, 27834-4300, United States, 1 252 744 6175, kapoora16@ecu.edu %K breast cancer %K cancer survivorship %K self-management %K patient education %D 2020 %7 4.12.2020 %9 Protocol %J JMIR Res Protoc %G English %X Background: Breast cancer is the most common form of cancer among American women, accounting for 23% of all cancer survivors nationally. Yet, the availability of adequate resources and tools for supporting breast cancer survivors has not kept up with the rapid advancement in treatment options, resulting in unmet supportive care needs, particularly among low-income and minority populations. This study explores an alternative means of delivering breast cancer survivorship care plans (SCPs), with the aim of improving survivor morbidity, patient knowledge, and self-management of treatment-related symptoms, as well as addressing inconsistencies in follow-up care visits. Objective: The overall goal of this study is to improve the uptake of SCP recommendations via an educational intervention for breast cancer survivors, to improve treatment-related morbidity, patient knowledge, self-management, and adherence to follow-up visits. The specific aims of the study are to (1) evaluate the feasibility of the online SCP, and (2) assess the impact of the online SCP on survivorship outcomes. Methods: We will enroll 50 breast cancer survivors who have completed initial breast cancer treatment into a 2-armed, randomized, waitlist-controlled pilot trial, and collect data at baseline and 6 months. For the first aim, we will use mixed methods, including surveys and personal interviews among the intervention group, to determine the feasibility of providing an online, interactive SCP (called ACESO) based on the survivors’ online user experience and their short-term adoption. For the secondary aim, we will compare the 2 groups to assess the primary outcomes of survivor knowledge, self-efficacy for self-management, perceived peer support, and adherence to SCP-recommended posttreatment follow-up visits to oncology and primary care; and the secondary outcomes of treatment-related morbidity (body weight, fatigue, depression, anxiety, sexual function, distress, and sleep quality). We assess these outcomes by using measurements from validated instruments with robust psychometric properties. Results: We have developed and refined the online breast cancer survivorship plan, ACESO, with consultation from breast cancer oncologists, nurses, and survivors. Approval for the study protocol has been obtained from the Institutional Review Board. An advisory board has also been established to provide oversight and recommendations on the conduct of the study. The study will be completed over a period of 2 years. Conclusions: The results of this pilot study will inform the feasibility and design of a larger-scale pragmatic trial to evaluate the impact of an online breast cancer SCP on treatment-related morbidity and self-efficacy for self-management. International Registered Report Identifier (IRRID): PRR1-10.2196/23414 %M 33274725 %R 10.2196/23414 %U https://www.researchprotocols.org/2020/12/e23414 %U https://doi.org/10.2196/23414 %U http://www.ncbi.nlm.nih.gov/pubmed/33274725 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 6 %N 2 %P e24137 %T eHealth Practices in Cancer Survivors With BMI in Overweight or Obese Categories: Latent Class Analysis Study %A Lin,Annie Wen %A Baik,Sharon H %A Aaby,David %A Tello,Leslie %A Linville,Twila %A Alshurafa,Nabil %A Spring,Bonnie %+ Department of Nutrition, Benedictine University, 5700 College Road, Kindlon Hall, Room 224, Lisle, IL, 60532, United States, 1 630 829 1145, alin@ben.edu %K eHealth %K patient communication %K cancer survivorship %K obesity %K behavior %D 2020 %7 3.12.2020 %9 Original Paper %J JMIR Cancer %G English %X Background: eHealth technologies have been found to facilitate health-promoting practices among cancer survivors with BMI in overweight or obese categories; however, little is known about their engagement with eHealth to promote weight management and facilitate patient-clinician communication. Objective: The objective of this study was to determine whether eHealth use was associated with sociodemographic characteristics, as well as medical history and experiences (ie, patient-related factors) among cancer survivors with BMI in overweight or obese categories. Methods: Data were analyzed from a nationally representative cross-sectional survey (National Cancer Institute’s Health Information National Trends Survey). Latent class analysis was used to derive distinct classes among cancer survivors based on sociodemographic characteristics, medical attributes, and medical experiences. Logistic regression was used to examine whether class membership was associated with different eHealth practices. Results: Three distinct classes of cancer survivors with BMI in overweight or obese categories emerged: younger with no comorbidities, younger with comorbidities, and older with comorbidities. Compared to the other classes, the younger with comorbidities class had the highest probability of identifying as female (73%) and Hispanic (46%) and feeling that clinicians did not address their concerns (75%). The older with comorbidities class was 6.5 times more likely than the younger with comorbidities class to share eHealth data with a clinician (odds ratio [OR] 6.53, 95% CI 1.08-39.43). In contrast, the younger with no comorbidities class had a higher likelihood of using a computer to look for health information (OR 1.93, 95% CI 1.10-3.38), using an electronic device to track progress toward a health-related goal (OR 2.02, 95% CI 1.08-3.79), and using the internet to watch health-related YouTube videos (OR 2.70, 95% CI 1.52-4.81) than the older with comorbidities class. Conclusions: Class membership was associated with different patterns of eHealth engagement, indicating the importance of tailored digital strategies for delivering effective care. Future eHealth weight loss interventions should investigate strategies to engage younger cancer survivors with comorbidities and address racial and ethnic disparities in eHealth use. %M 33156810 %R 10.2196/24137 %U http://cancer.jmir.org/2020/2/e24137/ %U https://doi.org/10.2196/24137 %U http://www.ncbi.nlm.nih.gov/pubmed/33156810 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 8 %N 11 %P e18364 %T Gamified Text Messaging Contingent on Device-Measured Steps: Randomized Feasibility Study of a Physical Activity Intervention for Cancer Survivors %A Robertson,Michael C %A Lyons,Elizabeth J %A Liao,Yue %A Baum,Miranda L %A Basen-Engquist,Karen M %+ Department of Behavioral Science, University of Texas MD Anderson Cancer Center, 1515 Holcombe Blvd, Houston, TX, 77030, United States, 1 713 745 3123, kbasenen@mdanderson.org %K cancer survivors %K physical activity %K motivation %K self-control %K mobile health %K mobile phone %K technology %D 2020 %7 24.11.2020 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: Physical activity can confer diverse benefits on cancer survivors. Unfortunately, many cancer survivors are not sufficiently active. The efficacy of physical activity interventions for this population may be increased by grounding them in Self-Determination Theory (SDT). Combining game design elements with wearable technologies may be a useful and scalable approach to targeting SDT constructs to promote cancer survivors’ physical activity. Objective: The primary aim of this study is to evaluate the feasibility and acceptability of Steps2Health, a physical activity intervention for cancer survivors. It also aims to investigate the effects of the intervention on motivation, physical activity, and step count. Methods: We randomized 78 insufficiently active cancer survivors to an experimental or comparison group. All participants received a physical activity tracker. The experimental group participants also received a set sequence of multimedia messaging service messages that were triggered in real time by meeting predetermined cumulative step count totals. Messages presented information about a virtual journey and included photographs and vivid descriptions of locations to increase autonomous motivation. Additional messages targeted perceptions of relatedness (eg, role modeling) and competence (eg, facilitating mastery experiences). We administered pre- and postintervention surveys and conducted 15 individual interviews to evaluate the intervention. We performed directed content analysis of qualitative data and conducted mixed effects linear modeling to investigate participants’ changes in motivation, self-reported physical activity, and device-measured step counts. Results: There was minimal loss to follow-up (3/78, 4%), the device wear rate was high (2548/3044, 83.71% of days), and technical problems with messaging based on real-time step counts were limited. Our qualitative data analysis revealed 3 overarching themes: accessibility, autonomous motivation, and relatedness. Participants successfully navigated the technological aspects and game design elements of the intervention. Participants found messages targeting autonomous motivation and competence or self-efficacy to be enjoyable and compelling, but one feasibility criterion for participant engagement (response rate to text messages) was not met. Messages targeting relatedness were less highly rated than the messages targeting autonomous motivation and competence or self-efficacy. During the intervention, both groups increased their motivation for physical activity (B=0.16; 95% CI 0.01 to 0.30; P=.04; d=0.49), and assignment to the experimental group was associated with increased self-reported leisure activity score (B=10.78; 95% CI 3.54 to 18.02; P=.005; d=0.64). The experimental group had greater increases in daily step counts over time (B=322.08; 95% CI 54.01 to 590.15; P=.02; d=0.28). Conclusions: This study supports the feasibility of using real-time game design elements to target SDT constructs and increase cancer survivors’ physical activity. Overall, our findings support the acceptability of the Steps2Health intervention, but fostering active participant engagement and targeting relatedness may present additional challenges. Steps2Health may help cancer survivors increase their physical activity levels. %M 33231551 %R 10.2196/18364 %U https://mhealth.jmir.org/2020/11/e18364 %U https://doi.org/10.2196/18364 %U http://www.ncbi.nlm.nih.gov/pubmed/33231551 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 6 %N 2 %P e19362 %T Web-Based Lifestyle Interventions for Prostate Cancer Survivors: Qualitative Study %A Wang,Elizabeth Y %A Graff,Rebecca E %A Chan,June M %A Langlais,Crystal S %A Broering,Jeanette M %A Ramsdill,Justin W %A Kessler,Elizabeth R %A Winters-Stone,Kerri M %A Van Blarigan,Erin L %A Kenfield,Stacey A %+ University of California, San Francisco, 550 16th St, 6th Floor, Box 1695, San Francisco, CA, 94158, United States, 1 5622616634, eyw2107@cumc.columbia.edu %K cancer survivorship %K digital health %K technology-based intervention %K internet-based intervention %K usability %D 2020 %7 10.11.2020 %9 Original Paper %J JMIR Cancer %G English %X Background: Exercise and a healthy diet can improve the quality of life and prognosis of prostate cancer survivors, but there have been limited studies on the feasibility of web-based lifestyle interventions in this population. Objective: This study aims to develop a data-driven grounded theory of web-based engagement by prostate cancer survivors based on their experience in the Community of Wellness, a 12-week randomized clinical trial designed to support healthy diet and exercise habits. Methods: TrueNTH’s Community of Wellness was a four-arm pilot study of men with prostate cancer (N=202) who received progressive levels of behavioral support (level 1: website; level 2: website with individualized diet and exercise recommendations; level 3: website with individualized diet and exercise recommendations, Fitbit, and text messages; and level 4: website with individualized diet and exercise recommendations, Fitbit and text messages, and separate phone calls with an exercise trainer and a registered dietitian). The primary aim of the study is to determine the feasibility and estimate the effects on behaviors (results reported in a separate paper). Following the 12-week intervention, we invited participants to participate in 4 focus groups, one for each intervention level. In this report, we used grounded theory analyses including open, axial, and selective coding to generate codes and themes from the focus group transcripts. Categories were refined across levels using embodied categorization and constant comparative methods. Results: In total, 20 men with prostate cancer participated in the focus groups: 5, 4, 5, and 6 men in levels 1, 2, 3, and 4, respectively. Participants converged on 5 common factors influencing engagement with the intervention: environment (home environment, competing priorities, and other lifestyle programs), motivation (accountability and discordance experienced within the health care system), preparedness (technology literacy, health literacy, trust, and readiness to change), program design (communication, materials, and customization), and program support (education, ally, and community). Each of these factors influenced the survivors’ long-term impressions and habits. We proposed a grounded theory associating these constructs to describe the components contributing to the intuitiveness of a web-based lifestyle intervention. Conclusions: These analyses suggest that web-based lifestyle interventions are more intuitive when we optimize participants’ technology and health literacy; tailor interface design, content, and feedback; and leverage key motivators (ie, health care providers, family members, web-based coach) and environmental factors (ie, familiarity with other lifestyle programs). Together, these grounded theory–based efforts may improve engagement with web-based interventions designed to support prostate cancer survivorship. %M 33170126 %R 10.2196/19362 %U http://cancer.jmir.org/2020/2/e19362/ %U https://doi.org/10.2196/19362 %U http://www.ncbi.nlm.nih.gov/pubmed/33170126 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 10 %P e21238 %T Development and Evaluation of a Digital Intervention for Fulfilling the Needs of Older Migrant Patients With Cancer: User-Centered Design Approach %A Sungur,Hande %A Yılmaz,Nida Gizem %A Chan,Brittany Ming Chu %A van den Muijsenbergh,Maria E T C %A van Weert,Julia C M %A Schouten,Barbara C %+ Department of Communication Science, Amsterdam School of Communication Research/ASCoR, University of Amsterdam, Postbus 15791, Amsterdam, 1001 NG, Netherlands, 31 20 525 3680, h.sungur@uva.nl %K cancer %K patient participation %K health services needs and demand %K eHealth %K migrants %K physician-patient relations %K culture %K mobile phone %D 2020 %7 26.10.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Older migrant patients with cancer face many language- and culture-related barriers to patient participation during medical consultations. To bridge these barriers, an eHealth tool called Health Communicator was developed in the Netherlands. Essentially used as a digital translator that can collect medical history information from patients, the Health Communicator did not include an oncological module so far, despite the fact that the prevalence of Dutch migrant patients with cancer is rising. Objective: This study aims to systematically develop, implement, and conduct a pilot evaluation of an oncological module that can be integrated into the Health Communicator to stimulate patient participation among older Turkish-Dutch and Moroccan-Dutch patients with cancer. Methods: The Spiral Technology Action Research model, which incorporates 5 cycles that engage key stakeholders in intervention development, was used as a framework. The listen phase consisted of a needs assessment. The plan phase consisted of developing the content of the oncological module, namely the question prompt lists (QPLs) and scripts for patient education videos. On the basis of pretests in the do phase, 6 audiovisual QPLs on patient rights, treatment, psychosocial support, lifestyle and access to health care services, patient preferences, and clinical trials were created. Additionally, 5 patient education videos were created about patient rights, psychosocial support, clinical trials, and patient-professional communication. In the study phase, the oncological module was pilot-tested among 27 older Turkish-Dutch and Moroccan-Dutch patients with cancer during their consultations. In the act phase, the oncological model was disseminated to practice. Results: The patient rights QPL was chosen most often during the pilot testing in the study phase. Patients and health care professionals perceived the QPLs as easy to understand and useful. There was a negative correlation between the tool’s ease of use and patient age. Patients reported that using the module impacted the consultations positively and thought they were more active compared with previous consultations. Health care professionals also found patients to be more active than usual. Health care professionals asked significantly more questions than patients during consultations. Patients requested to see the patients’ rights video most often. Patients rated the videos as easy to understand, useful, and informative. Most of the patients wanted to use the tool in the future. Conclusions: Older migrant patients with cancer, survivors, and health care professionals found the oncological module to be a useful tool and have shown intentions to incorporate it into future consultation sessions. Both QPLs and videos were evaluated positively, the latter indicating that the use of narratives to inform older, low-literate migrant patients with cancer about health-related topics in their mother tongue is a viable approach to increase the effectiveness of health care communication with this target group. %M 33104008 %R 10.2196/21238 %U http://www.jmir.org/2020/10/e21238/ %U https://doi.org/10.2196/21238 %U http://www.ncbi.nlm.nih.gov/pubmed/33104008 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 8 %N 9 %P e18491 %T Development and Evaluation of an Accelerometer-Based Protocol for Measuring Physical Activity Levels in Cancer Survivors: Development and Usability Study %A Crane,Tracy E %A Skiba,Meghan B %A Miller,Austin %A Garcia,David O %A Thomson,Cynthia A %+ Department of Biobehavioral Health Sciences, College of Nursing, University of Arizona, 1305 N Martin Ave, Tucson, AZ, 85721, United States, 1 5203310120, tecrane@email.arizona.edu %K wearable electronic devices %K physical activity %K cancer survivors %K activity trackers %K mobile phone %D 2020 %7 24.9.2020 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: The collection of self-reported physical activity using validated questionnaires has known bias and measurement error. Objective: Accelerometry, an objective measure of daily activity, increases the rigor and accuracy of physical activity measurements. Here, we describe the methodology and related protocols for accelerometry data collection and quality assurance using the Actigraph GT9X accelerometer data collection in a convenience sample of ovarian cancer survivors enrolled in GOG/NRG 0225, a 24-month randomized controlled trial of diet and physical activity intervention versus attention control. Methods: From July 2015 to December 2019, accelerometers were mailed on 1337 separate occasions to 580 study participants to wear at 4 time points (baseline, 6, 12, and 24 months) for 7 consecutive days. Study staff contacted participants via telephone to confirm their availability to wear the accelerometers and reviewed instructions and procedures regarding the return of the accelerometers and assisted with any technology concerns. Results: We evaluated factors associated with wear compliance, including activity tracking, use of a mobile app, and demographic characteristics with chi-square tests and logistic regression. Compliant data, defined as ≥4 consecutive days with ≥10 hours daily wear time, exceeded 90% at all study time points. Activity tracking, but no other characteristics, was significantly associated with compliant data at all time points (P<.001). This implementation of data collection through accelerometry provided highly compliant and usable activity data in women who recently completed treatment for ovarian cancer. Conclusions: The high compliance and data quality associated with this protocol suggest that it could be disseminated to support researchers who seek to collect robust objective activity data in cancer survivors residing in a wide geographic area. %M 32969828 %R 10.2196/18491 %U http://mhealth.jmir.org/2020/9/e18491/ %U https://doi.org/10.2196/18491 %U http://www.ncbi.nlm.nih.gov/pubmed/32969828 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 8 %N 9 %P e18867 %T Breast Cancer Survivors’ Perspectives on Motivational and Personalization Strategies in Mobile App–Based Physical Activity Coaching Interventions: Qualitative Study %A Monteiro-Guerra,Francisco %A Signorelli,Gabriel Ruiz %A Rivera-Romero,Octavio %A Dorronzoro-Zubiete,Enrique %A Caulfield,Brian %+ Salumedia Tecnologías, Avda. República Argentina, nº 24 Edificio Torre de los Remedios, 5ª planta - módulo A, Seville, 41011, Spain, 34 672787858, francisco.guerra@ucdconnect.ie %K mHealth %K mobile app %K mobile phone %K coaching %K physical activity %K breast cancer %D 2020 %7 21.9.2020 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: Despite growing evidence supporting the vital benefits of physical activity (PA) for breast cancer survivors, the majority do not meet the recommended levels of activity. Mobile app–based PA coaching interventions might be a feasible strategy to facilitate adherence of breast cancer survivors to the PA guidelines. To engage these individuals, PA apps need to be specifically designed based on their needs and preferences and to provide targeted support and motivation. However, more information is needed to understand how these technologies can provide individual and relevant experiences that have the ability to increase PA adherence and retain the individual’s interest in the long term. Objective: The aim of this study is to explore insights from breast cancer survivors on motivational and personalization strategies to be used in PA coaching apps and interventions. Methods: A qualitative study was conducted, using individual semistructured interviews, with 14 breast cancer survivors. The moderator asked open-ended questions and made use of a slideshow presentation to elicit the participants’ perspectives on potential mobile app–based intervention features. Transcribed interviews were evaluated by 3 reviewers using thematic content analysis. Results: Participants (mean age 53.3, SD 8.7 years) were White women. In total, 57% (8/14) of the participants did not adhere to the PA guidelines. In general, participants had access to and were interested in using technology. The identified themes included (1) barriers to PA, (2) psychological mediators of PA motivation, (3) needs and suggestions for reinforcing motivation support, (4) personalization aspects of the PA coaching experience, and (5) technology trustworthiness. Motivational determinants included perceived control, confidence and perceived growth, and connectedness. Participants were interested in having a straightforward app for monitoring and goal setting, which would include a prescribed activity program and schedule, and positive communication. Opinions varied in terms of social and game-like system possibilities. In addition, they expressed a desire for a highly personalized coaching experience based on as much information collected from them as possible (eg, disease stage, physical limitations, preferences) to provide individualized progress information, dynamic adjustment of the training plan, and context-aware activity suggestions (eg, based on weather and location). Participants also wanted the app to be validated or backed by professionals and were willing to share their data in exchange for a more personalized experience. Conclusions: This work suggests the need to develop simple, guiding, encouraging, trustworthy, and personalized PA coaching apps. The findings are in line with behavioral and personalization theories and methods that can be used to inform intervention design decisions. This paper opens new possibilities for the design of personalized and motivating PA coaching app experiences for breast cancer survivors, which might ultimately facilitate the sustained adherence of these individuals to the recommended levels of activity. %M 32955446 %R 10.2196/18867 %U https://mhealth.jmir.org/2020/9/e18867 %U https://doi.org/10.2196/18867 %U http://www.ncbi.nlm.nih.gov/pubmed/32955446 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 4 %N 9 %P e18412 %T Optimizing Health Information Technologies for Symptom Management in Cancer Patients and Survivors: Usability Evaluation %A Lattie,Emily G %A Bass,Michael %A Garcia,Sofia F %A Phillips,Siobhan M %A Moreno,Patricia I %A Flores,Ann Marie %A Smith,JD %A Scholtens,Denise %A Barnard,Cynthia %A Penedo,Frank J %A Cella,David %A Yanez,Betina %+ Department of Medical Social Sciences, Northwestern University, 750 N Lake Shore Drive, 10th Floor, Chicago, IL, 60611, United States, 1 312 503 3741, emily.lattie@northwestern.edu %K cancer survivorship %K eHealth %K patient-reported outcomes %K digital health %K symptom management %K supportive care %D 2020 %7 21.9.2020 %9 Original Paper %J JMIR Form Res %G English %X Background: Unmanaged cancer symptoms and treatment-related side effects can compromise long-term clinical outcomes and health-related quality of life. Health information technologies such as web-based platforms offer the possibility to supplement existing care and optimize symptom management. Objective: This paper describes the development and usability of a web-based symptom management platform for cancer patients and survivors that will be implemented within a large health system. Methods: A web-based symptom management platform was designed and evaluated via one-on-one usability testing sessions. The System Usability Scale (SUS), After Scenario Questionnaire (ASQ), and qualitative analysis of semistructured interviews were used to assess program usability. Results: Ten cancer survivors and five cancer center staff members participated in usability testing sessions. The mean score on the SUS was 86.6 (SD 14.0), indicating above average usability. The mean score on the ASQ was 2.5 (SD 2.1), indicating relatively high satisfaction with the usability of the program. Qualitative analyses identified valued features of the program and recommendations for further improvements. Conclusions: Cancer survivors and oncology care providers reported high levels of acceptability and usability in the initial development of a web-based symptom management platform for cancer survivors. Future work will test the effectiveness of this web-based platform. %M 32955450 %R 10.2196/18412 %U http://formative.jmir.org/2020/9/e18412/ %U https://doi.org/10.2196/18412 %U http://www.ncbi.nlm.nih.gov/pubmed/32955450 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 9 %N 9 %P e17742 %T Improving Adherence to Adjuvant Hormonal Therapy Among Disadvantaged Women Diagnosed with Breast Cancer in South Carolina: Proposal for a Multimethod Study %A Felder,Tisha M %A Heiney,Sue P %A Hebert,James R %A Friedman,Daniela B %A Elk,Ronit %A Franco,Regina %A Gansauer,Lucy %A Christensen,Barbara %A Ford,Marvella E %+ College of Nursing, University of South Carolina, 1601 Greene Street, Room 620, Columbia, SC, 29208, United States, 1 8037779830, feldert@mailbox.sc.edu %K breast neoplasms %K medicaid %K medication adherence %K vulnerable populations %K hormonal therapy %K endocrine therapy %K qualitative methods %D 2020 %7 3.9.2020 %9 Proposal %J JMIR Res Protoc %G English %X Background: Current clinical guidelines recommend that hormone receptor–positive breast cancer survivors take adjuvant hormonal therapy (AHT) for 5 to 10 years, following the end of definitive treatment. However, fewer than half of patients adhere to the guidelines, and suboptimal adherence to AHT is associated with an increased risk of breast cancer mortality. Research has extensively documented sociodemographic and disease-specific factors associated with adherence to AHT, but very little evidence exists on behavioral factors (eg, knowledge, patient-provider communication) that can be modified and targeted by interventions. Objective: The goal of this study is to develop and test a theory-based, multilevel intervention to improve adherence to AHT among breast cancer survivors from racially and socioeconomically disadvantaged backgrounds (eg, Medicaid-insured). The specific aims are to (1) explore multilevel (eg, patient, health care system) factors that influence adherence to AHT; (2) develop a theory-based, multilevel intervention to improve adherence to AHT; and (3) pilot test and evaluate the intervention developed in Aim 2. Methods: For Aim 1, we will recruit breast cancer survivors and health care professionals to participate in semistructured interviews to gain their perspectives about barriers and facilitators to AHT use. We will conduct a directed content analysis of the Aim 1 qualitative interview data. For Aim 2, we will integrate Aim 1 findings and current literature into the design of a multilevel intervention using an Intervention Mapping approach. For Aim 3, we will recruit Medicaid-insured breast cancer survivors to assess the feasibility of the pilot intervention. Results: From May 2016 to July 2018, we completed interviews with 19 breast cancer survivors and 23 health care professionals in South Carolina. We will conduct a directed content analysis of the qualitative interview data. Results from this analysis will be used, in combination with current literature, to design (Aim 2) and pilot test a theory-based multilevel intervention (Aim 3) in Summer 2021. Results of the pilot are expected for Fall 2021. Conclusions: This study will provide a deeper understanding of how to improve adherence to AHT, using a novel and multilevel approach, among socioeconomically disadvantaged breast cancer survivors who often experience disproportionate breast cancer mortality. International Registered Report Identifier (IRRID): DERR1-10.2196/17742 %M 32880374 %R 10.2196/17742 %U https://www.researchprotocols.org/2020/9/e17742 %U https://doi.org/10.2196/17742 %U http://www.ncbi.nlm.nih.gov/pubmed/32880374 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 9 %N 9 %P e20834 %T Remote Assessment of Functional Mobility and Strength in Older Cancer Survivors: Protocol for a Validity and Reliability Study %A Blair,Cindy K %A Harding,Elizabeth %A Herman,Carla %A Boyce,Tawny %A Demark-Wahnefried,Wendy %A Davis,Sally %A Kinney,Anita Y %A Pankratz,Vernon S %+ Department of Internal Medicine, University of New Mexico, MSC07-4025, 2325 Camino de Salud NE, Albuquerque, NM, 87131, United States, 1 5059257907, CiBlair@salud.unm.edu %K physical function %K physical performance %K older adults %K remote assessment %K videoconferencing %K cancer survivors %K cancer %K elderly %K physical activity %K telehealth %D 2020 %7 1.9.2020 %9 Protocol %J JMIR Res Protoc %G English %X Background: Older cancer survivors, faced with both age- and treatment-related morbidity, are at increased and premature risk for physical function limitations. Physical performance is an important predictor of disability, quality of life, and premature mortality, and thus is considered an important target of interventions designed to prevent, delay, or attenuate the physical functional decline. Currently, low-cost, valid, and reliable methods to remotely assess physical performance tests that are self-administered by older adults in the home-setting do not exist, thus limiting the reach, scalability, and dissemination of interventions. Objective: This paper will describe the rationale and design for a study to evaluate the accuracy, reliability, safety, and acceptability of videoconferencing and self-administered tests of functional mobility and strength by older cancer survivors in their own homes. Methods: To enable remote assessment, participants receive a toolkit and instructions for setting up their test course and communicating with the investigator. Two standard gerontologic performance tests are being evaluated: the Timed Up and Go test and the 30-second chair stand test. Phase 1 of the study evaluates proof-of-concept that older cancer survivors (age ≥60 years) can follow the testing protocol and use a tablet PC to communicate with the study investigator. Phase 2 evaluates the criterion validity of videoconference compared to direct observation of the two physical performance tests. Phase 3 evaluates reliability by enrolling 5-10 participants who agree to repeat the remote assessment (without direct observation). Phase 4 enrolls 5-10 new study participants to complete the remote assessment test protocol. Feedback from participants in each phase is used to refine the test protocol and instructions. Results: Enrollment began in December 2019. Ten participants completed the Phase 1 proof-of-concept. The study was paused in mid-March 2020 due to the COVID-19 pandemic. The study is expected to be completed by the end of 2020. Conclusions: This validity and reliability study will provide important information on the acceptability and safety of using videoconferencing to remotely assess two tests of functional mobility and strength, self-administered by older adults in their homes. Videoconferencing has the potential to expand the reach, scalability, and dissemination of interventions to older cancer survivors, and potentially other older adults, especially in rural areas. Trial Registration: ClinicalTrials.gov NCT04339959; https://clinicaltrials.gov/ct2/show/NCT04339959 International Registered Report Identifier (IRRID): DERR1-10.2196/20834 %M 32769075 %R 10.2196/20834 %U https://www.researchprotocols.org/2020/9/e20834 %U https://doi.org/10.2196/20834 %U http://www.ncbi.nlm.nih.gov/pubmed/32769075 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 8 %P e15335 %T Cancer Survivors’ Receptiveness to Digital Technology–Supported Physical Rehabilitation and the Implications for Design: Qualitative Study %A Rossen,Sine %A Kayser,Lars %A Vibe-Petersen,Jette %A Christensen,Jesper Frank %A Ried-Larsen,Mathias %+ Copenhagen Centre for Cancer and Health, Municipality of Copenhagen, Nørre Allé 45, Copenhagen, DK-2200, Denmark, 45 60298218, kg58@kk.dk %K cancer %K rehabilitation %K physical activity %K digital technology %D 2020 %7 5.8.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Physical activity is associated with a positive prognosis in cancer survivors and may decrease the risk of adverse effects of treatment. Accordingly, physical activity programs are recommended as a part of cancer rehabilitation services. Digital technology may support cancer survivors in increasing their level of physical activity and increase the reach or efficiency of cancer rehabilitation services, yet it also comes with a range of challenges. Objective: The aim of this qualitative study was to explore cancer survivors’ receptiveness to using digital technology as a mode of support to increase their physical activity in a municipality-based cancer rehabilitation setting. Methods: Semistructured interviews were conducted with 11 cancer survivors (3 males, 8 females, age range 32-82 years) who were referred for cancer rehabilitation and had participated in a questionnaire survey using the Readiness and Enablement Index for Health Technology (READHY) questionnaire. Data analysis was based on the content analysis method. Results: Two themes were identified as important for the interviewees’ receptiveness to using digital technology services in connection with their physical activity during rehabilitation: their attitude toward physical activity and their attitude toward digital technology–assisted physical activity. Our results indicated that it is important to address the cancer survivors’ motivation for using technology for physical activity and their individual preferences in terms of the following: (1) incidental or structured (eg, cardiovascular and strength exercises or disease-specific rehabilitative exercises) physical activity; (2) social or individual context; and (3) instruction (know-how) or information (know-why). Conclusions: The identified preferences provide new insight that complements the cancer survivors’ readiness level and can likely help designers, service providers, and caregivers provide solutions that increase patient receptiveness toward technology-assisted physical activity. Combining digital technology informed by cancer survivors’ needs, preferences, and readiness with the capacity building of the workforce can aid in tailoring digital solutions to suit not only individuals who are receptive to using such technologies but also those reluctant to do so. %M 32755892 %R 10.2196/15335 %U https://www.jmir.org/2020/8/e15335 %U https://doi.org/10.2196/15335 %U http://www.ncbi.nlm.nih.gov/pubmed/32755892 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 9 %N 7 %P e18420 %T A Remotely Delivered, Peer-Led Physical Activity Intervention for Younger Breast Cancer Survivors (Pink Body Spirit): Protocol for a Feasibility Study and Mixed Methods Process Evaluation %A Weiner,Lauren S %A Nagel,Stori %A Su,H Irene %A Hurst,Samantha %A Hartman,Sheri J %+ Moores Cancer Center, University of California, San Diego, 3855 Health Sciences Drive, Mail Code: 0901, La Jolla, CA, 92093, United States, 1 8585349235, sjhartman@ucsd.edu %K physical activity %K cancer survivors %K peer mentors %K quality of life %K pilot study %K breast cancer %K fitness trackers %K mobile phone %D 2020 %7 8.7.2020 %9 Original Paper %J JMIR Res Protoc %G English %X Background: Younger breast cancer survivors consistently report a greater impact of their cancer experience on quality of life compared with older survivors, including higher rates of body image disturbances, sexual dysfunction, and fatigue. One potential strategy to improve quality of life is through physical activity, but this has been understudied in younger breast cancer survivors, who often decrease their activity during and after cancer treatment. Objective: The aim of this study is to explore the feasibility and acceptability of a technology-based, remotely delivered, peer-led physical activity intervention for younger breast cancer survivors. We will also assess the preliminary impact of the intervention on changes in physical activity and multiple aspects of quality of life. Methods: This study is a community-academic partnership between University of California, San Diego and Haus of Volta, a nonprofit organization that promotes positive self-image in younger breast cancer survivors. This ongoing pilot study aims to recruit 30 younger breast cancer survivors across the United States (<55 years old, >6 months post primary cancer treatment, self-report <60 min of moderate-to-vigorous-intensity physical activity [MVPA]) into a 3-month peer-delivered, fully remote exercise program. Participants will complete 6 biweekly video chat sessions with a trained peer mentor, a fellow younger breast cancer survivor. Participants will receive a Fitbit Charge 3; weekly feedback on Fitbit data from their peer mentor; and access to a private, in-app Fitbit Community to provide and receive support from other participants and all peer mentors. At baseline, 3 months, and 6 months, participants will complete quality of life questionnaires, and MVPA will be measured using the ActiGraph accelerometer. Feasibility and acceptability will be explored through a mixed methods approach (ie, quantitative questionnaires and qualitative interviews). Intervention delivery and adaptations by peer mentors will be tracked through peer mentor self-evaluations and reflections, review of video-recorded mentoring sessions, and monthly templated reflections by the research team. Results: Recruitment began in September 2019. As of February 2020, the physical activity intervention is ongoing. Final measures are expected to occur in summer 2020. Conclusions: This study explores the potential for physical activity to improve sexual function, body image, and fatigue, key quality of life issues in younger breast cancer survivors. Using peer mentors extends our reach into the young survivor community. The detailed process evaluation of intervention delivery and adaptations by mentors could inform a future hybrid-effectiveness implementation trial. Finally, remote delivery with commercially available technology could promote broader dissemination. Trial Registration: ClinicalTrials.gov NCT04064892; https://clinicaltrials.gov/ct2/show/NCT04064892 International Registered Report Identifier (IRRID): DERR1-10.2196/18420 %M 32673270 %R 10.2196/18420 %U https://www.researchprotocols.org/2020/7/e18420 %U https://doi.org/10.2196/18420 %U http://www.ncbi.nlm.nih.gov/pubmed/32673270 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 8 %N 6 %P e18781 %T A Web-Based Mobile App (INTERACCT App) for Adolescents Undergoing Cancer and Hematopoietic Stem Cell Transplantation Aftercare to Improve the Quality of Medical Information for Clinicians: Observational Study %A Lawitschka,Anita %A Buehrer,Stephanie %A Bauer,Dorothea %A Peters,Konrad %A Silbernagl,Marisa %A Zubarovskaya,Natalia %A Brunmair,Barbara %A Kayali,Fares %A Hlavacs,Helmut %A Mateus-Berr,Ruth %A Riedl,David %A Rumpold,Gerhard %A Peters,Christina %+ Stem Cell Transplantation-Outpatient and Aftercare Clinic, St. Anna Children’s Hospital, Medical University Vienna, Kinderspitalgasse 15, 1090 Vienna, Vienna, Austria, 43 1 40 170 ext 2900, anita.lawitschka@stanna.at %K mobile app %K adolescents %K cancer %K stem cell transplant %K self-reported heath status %K medical information exchange %K mobile phone %D 2020 %7 30.6.2020 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: A growing number of cancer and hematopoietic stem cell transplant (HSCT) survivors require long-term follow-up with optimal communication schemes, and patients' compliance is crucial. Adolescents have various unmet needs. Regarding self-report of symptoms and health status, users of mobile apps showed enhanced compliance. Currently, HSCT aftercare at the HSCT outpatient clinic of the St. Anna Children’s Hospital in Vienna, Austria, is based on handwritten diaries, carrying various disadvantages. Recently, we developed the prototype of a web-based, self-monitoring gamified mobile app tailored for adolescents: the INTERACCT (Integrating Entertainment and Reaction Assessment into Child Cancer Therapy) app. Objective: This observational, prospective study evaluated the usability of the INTERACCT app for tracking real-time self-reported symptoms and health status data in adolescent HSCT patients and a healthy matched control group. The primary outcome of the study was the quality of the self-reported medical information. We hypothesized that the mobile app would provide superior medical information for the clinicians than would the handwritten diaries. Methods: Health data were reported via paper diary and mobile app for 5 consecutive days each. The quality of medical information was rated on a 5-point scale independently and blinded by two HSCT clinicians, and the duration of use was evaluated. A total of 52 participant questionnaires were assessed for gaming patterns and device preferences, self-efficacy, users’ satisfaction, acceptability, and suggestions for improvement of the mobile app. Interrater reliability was calculated with the intraclass correlation coefficient, based on a two-way mixed model; one-way repeated-measures analysis of variance and t tests were conducted post hoc. Descriptive methods were used for correlation with participants’ demographics. For users’ satisfaction and acceptability of the mobile app, the median and the IQR were calculated. Results: Data from 42 participants—15 patients and 27 healthy students—with comparable demographics were evaluated. The results of our study indicated a superiority of the quality of self-reported medical data in the INTERACCT app over traditional paper-and-pencil assessment (mobile app: 4.14 points, vs paper-based diary: 3.77 points, P=.02). The mobile app outperformed paper-and-pencil assessments mainly among the patients, in particular among patients with treatment-associated complications (mobile app: 4.43 points, vs paper-based diary: 3.73 points, P=.01). The mobile app was used significantly longer by adolescents (≥14 years: 4.57 days, vs ≤13 years: 3.14 days, P=.03) and females (4.76 days for females vs 2.95 days for males, P=.004). This corresponds with a longer duration of use among impaired patients with comorbidities. User satisfaction and acceptability ratings for the mobile app were high across all groups, but adherence to entering a large amount of data decreased over time. Based on our results, we developed a case vignette of the target group. Conclusions: Our study was the first to show that the quality of patient-reported medical information submitted via the INTERACCT app embedded in a serious game is superior to that submitted via a handwritten diary. In light of these results, a refinement of the mobile app supported by a machine learning approach is planned within an international research project. %M 32602847 %R 10.2196/18781 %U http://mhealth.jmir.org/2020/6/e18781/ %U https://doi.org/10.2196/18781 %U http://www.ncbi.nlm.nih.gov/pubmed/32602847 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 9 %N 6 %P e17724 %T Diagnosing Preclinical Cardiac Dysfunction in Swiss Childhood Cancer Survivors: Protocol for a Single-Center Cohort Study %A Schindera,Christina %A Kuehni,Claudia Elisabeth %A Pavlovic,Mladen %A Haegler-Laube,Eva Simona %A Rhyner,Daniel %A Waespe,Nicolas %A Roessler,Jochen %A Suter,Thomas %A von der Weid,Nicolas Xavier %+ Childhood Cancer Registry, Institute of Social and Preventive Medicine, University of Bern, Mittelstrasse 43, Bern, 3012, Switzerland, 41 31631 ext 3771, christina.schindera@ispm.unibe.ch %K cardiotoxicity %K Switzerland %K echocardiography %K speckle tracking %K strain %K anthracyclines %K alkylating agents %K steroids %K cardiac radiation %D 2020 %7 10.6.2020 %9 Protocol %J JMIR Res Protoc %G English %X Background: Cardiovascular disease is the leading nonmalignant cause of late deaths in childhood cancer survivors. Cardiovascular disease and cardiac dysfunction can remain asymptomatic for many years, but eventually lead to progressive disease with high morbidity and mortality. Early detection and intervention are therefore crucial to improve outcomes. Objective: In our study, we aim to assess the prevalence of preclinical cardiac dysfunction in adult childhood cancer survivors using conventional and speckle tracking echocardiography; determine the association between cardiac dysfunction and treatment-related risk factors (anthracyclines, alkylating agents, steroids, cardiac radiation) and modifiable cardiovascular risk factors (abdominal obesity, hypertension); investigate the development of cardiac dysfunction longitudinally in a defined cohort; study the association between cardiac dysfunction and other health outcomes like pulmonary disease, endocrine disease, renal disease, quality of life, fatigue, strength and endurance, and physical activity; and gain experience conducting a clinical study of childhood cancer survivors that will be extended to a national, multicenter study of cardiac complications. Methods: For this retrospective cohort study, we will invite ≥5-year childhood cancer survivors who were treated at the University Children's Hospital Bern, Switzerland with any chemotherapy or cardiac radiation since 1976 and who are ≥18 years of age at the time of the study for a cardiac assessment at the University Hospital Bern. This includes 544 childhood cancer survivors, of whom about half were treated with anthracyclines and/or cardiac radiation and half with any other chemotherapy. The standardized cardiac assessment includes a medical history focusing on signs of cardiovascular disease and its risk factors, a physical examination, anthropometry, vital parameters, the 1-minute sit-to-stand test, and echocardiography including 2-dimensional speckle tracking. Results: We will invite 544 eligible childhood cancer survivors (median age at the time of the study, 32.5 years; median length of time since diagnosis, 25.0 years) for a cardiac assessment. Of these survivors, 300 (55%) are at high risk, and 244 (45%) are at standard risk of cardiac dysfunction. Conclusions: This study will determine the prevalence of preclinical cardiac dysfunction in Swiss childhood cancer survivors, inform whether speckle tracking echocardiography is more sensitive to cardiac dysfunction than conventional echocardiography, and give a detailed picture of risk factors for cardiac dysfunction. The results will help improve primary treatment and follow-up care of children with cancer. Trial Registration: ClinicalTrials.gov NCT03790943; https://clinicaltrials.gov/ct2/show/NCT03790943 International Registered Report Identifier (IRRID): DERR1-10.2196/17724 %M 32269016 %R 10.2196/17724 %U http://www.researchprotocols.org/2020/6/e17724/ %U https://doi.org/10.2196/17724 %U http://www.ncbi.nlm.nih.gov/pubmed/32269016 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 9 %N 5 %P e17078 %T A Web-Based, Positive Emotion Skills Intervention for Enhancing Posttreatment Psychological Well-Being in Young Adult Cancer Survivors (EMPOWER): Protocol for a Single-Arm Feasibility Trial %A Salsman,John M %A McLouth,Laurie E %A Cohn,Michael %A Tooze,Janet A %A Sorkin,Mia %A Moskowitz,Judith T %+ Department of Social Sciences and Health Policy, Wake Forest Baptist Comprehensive Cancer Center, Wake Forest School of Medicine, Medical Center Boulevard, Winston Salem, NC, 27157, United States, 1 336 713 3613, jsalsman@wakehealth.edu %K emotions %K telemedicine %K happiness %K eHealth %K cancer %K young adult %K internet %K mobile phone %D 2020 %7 28.5.2020 %9 Protocol %J JMIR Res Protoc %G English %X Background: Adolescent and young adult cancer survivors (AYAs) experience clinically significant distress and have limited access to supportive care services. Interventions to enhance psychological well-being have improved positive affect and reduced depression in clinical and healthy populations but have not been routinely tested in AYAs. Objective: The aim of this protocol is to (1) test the feasibility and acceptability of a Web-based positive emotion skills intervention for posttreatment AYAs called Enhancing Management of Psychological Outcomes With Emotion Regulation (EMPOWER) and (2) examine proof of concept for reducing psychological distress and enhancing psychological well-being. Methods: The intervention development and testing are taking place in 3 phases. In phase 1, we adapted the content of an existing, Web-based positive emotion intervention so that it would be suitable for AYAs. EMPOWER targets 8 skills (noticing positive events, capitalizing, gratitude, mindfulness, positive reappraisal, goal setting, personal strengths, and acts of kindness) and is delivered remotely as a 5-week, Web-based intervention. Phase 2 consisted of a pilot test of EMPOWER in a single-arm trial to evaluate feasibility, acceptability, retention, and adherence and to collect data on psychosocial outcomes for proof of concept. In phase 3, we are refining study procedures and conducting a second pilot test. Results: The project was part of a career development award. Pilot work began in June 2015, and data collection was completed in March 2019. The analysis is ongoing, and results will be submitted for publication by May 2020. Conclusions: If this intervention proves feasible and acceptable, EMPOWER will be primed for a subsequent large, multisite randomized controlled trial. As a scalable intervention, it will be ideally suited for AYA survivors who would otherwise not have access to supportive care interventions to help manage posttreatment distress and enhance well-being. Trial Registration: ClinicalTrials.gov NCT02832154, https://clinicaltrials.gov/ct2/show/NCT02832154. International Registered Report Identifier (IRRID): DERR1-10.2196/17078 %M 32463014 %R 10.2196/17078 %U http://www.researchprotocols.org/2020/5/e17078/ %U https://doi.org/10.2196/17078 %U http://www.ncbi.nlm.nih.gov/pubmed/32463014 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 6 %N 1 %P e15859 %T Assessing Breast Cancer Survivors’ Perceptions of Using Voice-Activated Technology to Address Insomnia: Feasibility Study Featuring Focus Groups and In-Depth Interviews %A Arem,Hannah %A Scott,Remle %A Greenberg,Daniel %A Kaltman,Rebecca %A Lieberman,Daniel %A Lewin,Daniel %+ Department of Epidemiology, Milken Institute School of Public Health, George Washington University, 950 New Hampshire Ave NW, Rm 514, Washington, DC, 20052, United States, 1 2029944676, hannaharem@gwu.edu %K artificial intelligence %K breast neoplasms %K survivors %K insomnia %K cognitive behavioral therapy %K mobile phones %D 2020 %7 26.5.2020 %9 Original Paper %J JMIR Cancer %G English %X Background: Breast cancer survivors (BCSs) are a growing population with a higher prevalence of insomnia than women of the same age without a history of cancer. Cognitive behavioral therapy for insomnia (CBT-I) has been shown to be effective in this population, but it is not widely available to those who need it. Objective: This study aimed to better understand BCSs’ experiences with insomnia and to explore the feasibility and acceptability of delivering CBT-I using a virtual assistant (Amazon Alexa). Methods: We first conducted a formative phase with 2 focus groups and 3 in-depth interviews to understand BCSs’ perceptions of insomnia as well as their interest in and comfort with using a virtual assistant to learn about CBT-I. We then developed a prototype incorporating participant preferences and CBT-I components and demonstrated it in group and individual settings to BCSs to evaluate acceptability, interest, perceived feasibility, educational potential, and usability of the prototype. We also collected open-ended feedback on the content and used frequencies to describe the quantitative data. Results: We recruited 11 BCSs with insomnia in the formative phase and 14 BCSs in the prototype demonstration. In formative work, anxiety, fear, and hot flashes were identified as causes of insomnia. After prototype demonstration, nearly 79% (11/14) of participants reported an interest in and perceived feasibility of using the virtual assistant to record sleep patterns. Approximately two-thirds of the participants thought lifestyle modification (9/14, 64%) and sleep restriction (9/14, 64%) would be feasible and were interested in this feature of the program (10/14, 71% and 9/14, 64%, respectively). Relaxation exercises were rated as interesting and feasible using the virtual assistant by 71% (10/14) of the participants. Usability was rated as better than average, and all women reported that they would recommend the program to friends and family. Conclusions: This virtual assistant prototype delivering CBT-I components by using a smart speaker was rated as feasible and acceptable, suggesting that this prototype should be fully developed and tested for efficacy in the BCS population. If efficacy is shown in this population, the prototype should also be adapted for other high-risk populations. %M 32348274 %R 10.2196/15859 %U http://cancer.jmir.org/2020/1/e15859/ %U https://doi.org/10.2196/15859 %U http://www.ncbi.nlm.nih.gov/pubmed/32348274 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 5 %P e16902 %T Exploring Strategies for Using Social Media to Self-Manage Health Care When Living With and Beyond Breast Cancer: In-Depth Qualitative Study %A Ure,Cathy %A Cooper-Ryan,Anna Mary %A Condie,Jenna %A Galpin,Adam %+ Directorate of Allied and Public Health, School of Health and Society, University of Salford, Allerton Building, Salford, Manchester, M6 6PU, United Kingdom, 44 (0)161 295 5094, c.m.ure1@salford.ac.uk %K breast cancer %K social media %K internet %K self-management %K psychosocial health %K survivorship %D 2020 %7 25.5.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: As breast cancer survival rates improve and structural health resources are increasingly being stretched, health providers require people living with and beyond breast cancer (LwBBC) to self-manage aspects of their care. Objective: This study aimed to explore how women use and experience social media to self-manage their psychosocial needs and support self-management across the breast cancer continuum. Methods: The experiences of 21 women (age range 27-64 years) were explored using an in-depth qualitative approach. The women varied in the duration of their experiences of LwBBC, which facilitated insights into how they evolve and change their self-management strategies over time. Semistructured interviews were analyzed inductively using a thematic analysis, a polytextual analysis, and voice-centered relational methods. Results: The use of multiple social media platforms, such as YouTube, Facebook, WhatsApp, and Twitter, enabled women to self-manage aspects of their care by satisfying needs for timely, relevant, and appropriate support, by navigating identities disrupted by diagnosis and treatment and by allowing them to (re)gain a sense of control. Women described extending their everyday use of multiple platforms to self-manage their care. However, women experienced social media as both empowering and dislocating, as their engagement was impacted by their everyday experiences of LwBBC. Conclusions: Health care professionals (HCPs) need to be more aware, and open to the possibilities, of women using multiple social media resources as self-management tools. It is important for HCPs to initiate value-free discussions and create the space necessary for women to share how social media resources support a tailored and timely self-managed approach to their unique psychosocial needs. %M 32364510 %R 10.2196/16902 %U http://www.jmir.org/2020/5/e16902/ %U https://doi.org/10.2196/16902 %U http://www.ncbi.nlm.nih.gov/pubmed/32364510 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 5 %P e17824 %T Help to Overcome Problems Effectively for Cancer Survivors: Development and Evaluation of a Digital Self-Management Program %A Martin,Faith %A Wright,Hayley %A Moody,Louise %A Whiteman,Becky %A McGillion,Michael %A Clyne,Wendy %A Pearce,Gemma %A Turner,Andy %+ Faculty Research Centre for Intelligent Healthcare, Faculty of Health and Life Sciences, Coventry University, Priory Street, Coventry, CV1 5FB, United Kingdom, 44 02477657498, hsx116@coventry.ac.uk %K positive psychology %K self-management %K hope %K quality of life %K survivorship %K cancer %D 2020 %7 19.5.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: People living with cancer face numerous psychosocial challenges, including cancer-related fatigue, fear of recurrence, and depression. There is a lack of digital interventions tailored to the needs of people living with all types of cancer. We developed a 6-week, digital, peer-delivered, self-management program: iHOPE (Help to Overcome Problems Effectively; where ‘i’ indicates the digital version of the program). The program is underpinned by positive psychology and cognitive behavioral therapy to meet these psychosocial challenges. Objective: This study aimed to assess the feasibility of the iHOPE program among people living with cancer. Program adherence and satisfaction along with changes in psychological distress and positive well-being were measured. Methods: A pre-post, acceptability, and feasibility design was used. People living with cancer (N=114) were recruited via a national cancer charity in the United Kingdom and were given access to the iHOPE program. Demographic and other participant characteristics were recorded. Participants completed digital measures at baseline and the end of the 6-week program for depression, anxiety, cancer-related fatigue, cancer worry or fear of cancer recurrence, positive mental well-being, hope, gratitude, and health status. The website’s system recorded data on the usage of the program. Satisfaction with the program was also measured. Results: A total of 114 participants completed the baseline questionnaires. Of these, 70 people (61.4%) participated in all 6 sessions. The mean number of sessions undertaken was 5.0 (SD 1.5). Moreover, 44.7% (51/114) of participants completed at least three sessions and end-of-program outcome measures. A total of 59 participants completed the satisfaction questionnaire, where ≥90% (54/58) of participants reported that the program was easy to navigate and was well managed by the peer facilitators, and that they found the social networking tools useful. Preliminary efficacy testing among the 51 participants who completed baseline and postprogram outcome measures showed that postprogram scores decreased for depression, anxiety, cancer-related fatigue, and fear of recurrence (all P<.001) and increased for positive mental well-being (P<.001), hope (both P<.001), and gratitude (P=.02). Conclusions: The feasibility evidence is promising, showing that the peer-delivered digital iHOPE program is acceptable and practical. Implementation of the iHOPE program on a wider scale will incorporate further research and development to maximize the completion rates of the measures. Initial effectiveness data suggest positive impacts on important cancer-related quality of life and mental well-being outcomes. A randomized controlled trial design with a longer follow-up is needed to confirm the potential of the iHOPE program for improving mental and physical health outcomes for cancer survivors. %M 32209529 %R 10.2196/17824 %U http://www.jmir.org/2020/5/e17824/ %U https://doi.org/10.2196/17824 %U http://www.ncbi.nlm.nih.gov/pubmed/32209529 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 9 %N 5 %P e15178 %T A Smartphone App–Based Mindfulness Intervention for Cancer Survivors: Protocol for a Randomized Controlled Trial %A Subnis,Utkarsh B %A Farb,Norman AS %A Piedalue,Katherine-Ann Laura %A Speca,Michael %A Lupichuk,Sasha %A Tang,Patricia A %A Faris,Peter %A Thoburn,Mark %A Saab,Bechara J %A Carlson,Linda E %+ Department of Oncology, University of Calgary, 2202 2 Street SW, Calgary, AB, T2S 3C1, Canada, 1 4034762465, utkarsh.subnis@ucalgary.ca %K mobile health %K psycho-oncology %K mindfulness %K mind-body therapies %D 2020 %7 11.5.2020 %9 Protocol %J JMIR Res Protoc %G English %X Background: Cancer patients transitioning to survivorship after completing cancer treatments need psychosocial interventions to manage stressors such as anxiety, depression, and fear of cancer recurrence. Mindfulness-based interventions (MBIs) are effective for treating these symptoms; however, cancer survivors are often unable to participate in face-to-face interventions because of difficulties such as work and family commitments, treatment-related side-effects, scheduling conflicts, and geography. Smartphone app–based MBIs are an innovative way to deliver psychosocial cancer care and can overcome several such difficulties, since patients can participate at their own convenience. Objective: The SEAMLESS (Smartphone App–Based Mindfulness Intervention for Cancer Survivors) study aims to evaluate the efficacy of a tailored app-based mindfulness intervention for cancer survivors (the Am Mindfulness-Based Cancer Survivorship—MBCS—Journey) for treating (1) symptoms of stress (primary outcome), as well as (2) fear of cancer recurrence, anxiety, depression, fatigue, and overall physical functioning (secondary outcomes). This is the first Canadian efficacy trial of a tailored mindfulness app intervention in cancer survivors. Methods: This is a randomized waitlist-controlled trial, which will evaluate the effectiveness of Am MBCS for impacting the primary and secondary outcomes in cancer survivors who have completed all their cancer treatments. Outcomes will be assessed using web-based surveys with validated psychometric instruments at (1) baseline, (2) mid-intervention (2 weeks later), (3) immediately postintervention (4 weeks), (4) 3 months postbaseline, (5) 6 months postbaseline, and (6) 12 months postbaseline. The waitlist group will complete all assessments and will cross over to the intervention condition after the 3-month assessment. In addition, data will be obtained by the smartphone app itself, which includes users’ engagement with the app-based intervention, their emotional state (eg, angry and elated) from a user-inputted digital emotion-mapping board, and psychobiometric data using photoplethysmography technology. Results: The study received ethics approval in September 2018 and recruitment commenced in January 2019. Participants are being recruited through a provincial cancer registry, and the majority of participants currently enrolled are breast (44/83, 53%) or colorectal (17/83, 20%) cancer survivors, although some survivors of other cancer are also present. Data collection for analysis of the primary outcome time-point will be complete by September 2019, and the follow-up data will be collected and analyzed by September 2020. Data will be analyzed to determine group differences using linear mixed modelling statistical techniques. Conclusions: Cancer care providers are uncertain about the efficacy of app-based mindfulness interventions for patients, which are available in great supply in today’s digital world. This study will provide rigorously evaluated efficacy data for an app-based mindfulness intervention for cancer survivors, which if helpful, could be made available for psychosocial care at cancer centers worldwide. Trial Registration: ClinicalTrials.gov NCT03484000; https://clinicaltrials.gov/ct2/show/NCT03484000 International Registered Report Identifier (IRRID): DERR1-10.2196/15178 %M 32390591 %R 10.2196/15178 %U https://www.researchprotocols.org/2020/5/e15178 %U https://doi.org/10.2196/15178 %U http://www.ncbi.nlm.nih.gov/pubmed/32390591 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 5 %P e16084 %T A User-Friendly, Web-Based Integrative Tool (ESurv) for Survival Analysis: Development and Validation Study %A Pak,Kyoungjune %A Oh,Sae-Ock %A Goh,Tae Sik %A Heo,Hye Jin %A Han,Myoung-Eun %A Jeong,Dae Cheon %A Lee,Chi-Seung %A Sun,Hokeun %A Kang,Junho %A Choi,Suji %A Lee,Soohwan %A Kwon,Eun Jung %A Kang,Ji Wan %A Kim,Yun Hak %+ Department of Anatomy, School of Medicine, Pusan National University, 49 Busandaehak-ro, Yangsan, 50612, Republic of Korea, 82 515108091, yunhak10510@pusan.ac.kr %K survival analysis %K grouped variable selection %K The Cancer Genome Atlas %K web-based tool %K user service %D 2020 %7 5.5.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Prognostic genes or gene signatures have been widely used to predict patient survival and aid in making decisions pertaining to therapeutic actions. Although some web-based survival analysis tools have been developed, they have several limitations. Objective: Taking these limitations into account, we developed ESurv (Easy, Effective, and Excellent Survival analysis tool), a web-based tool that can perform advanced survival analyses using user-derived data or data from The Cancer Genome Atlas (TCGA). Users can conduct univariate analyses and grouped variable selections using multiomics data from TCGA. Methods: We used R to code survival analyses based on multiomics data from TCGA. To perform these analyses, we excluded patients and genes that had insufficient information. Clinical variables were classified as 0 and 1 when there were two categories (for example, chemotherapy: no or yes), and dummy variables were used where features had 3 or more outcomes (for example, with respect to laterality: right, left, or bilateral). Results: Through univariate analyses, ESurv can identify the prognostic significance for single genes using the survival curve (median or optimal cutoff), area under the curve (AUC) with C statistics, and receiver operating characteristics (ROC). Users can obtain prognostic variable signatures based on multiomics data from clinical variables or grouped variable selections (lasso, elastic net regularization, and network-regularized high-dimensional Cox-regression) and select the same outputs as above. In addition, users can create custom gene signatures for specific cancers using various genes of interest. One of the most important functions of ESurv is that users can perform all survival analyses using their own data. Conclusions: Using advanced statistical techniques suitable for high-dimensional data, including genetic data, and integrated survival analysis, ESurv overcomes the limitations of previous web-based tools and will help biomedical researchers easily perform complex survival analyses. %M 32369034 %R 10.2196/16084 %U https://www.jmir.org/2020/5/e16084 %U https://doi.org/10.2196/16084 %U http://www.ncbi.nlm.nih.gov/pubmed/32369034 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 6 %N 1 %P e15750 %T A Novel Mobile Phone App Intervention With Phone Coaching to Reduce Symptoms of Depression in Survivors of Women’s Cancer: Pre-Post Pilot Study %A Chow,Philip I %A Drago,Fabrizio %A Kennedy,Erin M %A Cohn,Wendy F %+ University of Virginia, 560 Ray C Hunt Dr, Charlottesville, VA, 22903, United States, 1 9244345401, philip.i.chow@gmail.com %K mobile apps %K mental health %K mHealth %K women %K cancer survivors %D 2020 %7 6.2.2020 %9 Original Paper %J JMIR Cancer %G English %X Background: Psychological distress is a major issue among survivors of women’s cancer who face numerous barriers to accessing in-person mental health treatments. Mobile phone app–based interventions are scalable and have the potential to increase access to mental health care among survivors of women’s cancer worldwide. Objective: This study aimed to evaluate the acceptability and preliminary efficacy of a novel app-based intervention with phone coaching in a sample of survivors of women’s cancer. Methods: In a single-group, pre-post, 6-week pilot study in the United States, 28 survivors of women’s cancer used iCanThrive, a novel app intervention that teaches skills for coping with stress and enhancing well-being, with added phone coaching. The primary outcome was self-reported symptoms of depression (Center for Epidemiologic Studies Depression Scale). Emotional self-efficacy and sleep disruption were also assessed at baseline, 6-week postintervention, and 4 weeks after the intervention period. Feedback obtained at the end of the study focused on user experience of the intervention. Results: There were significant decreases in symptoms of depression and sleep disruption from baseline to postintervention. Sleep disruption remained significantly lower at 4-week postintervention compared with baseline. The iCanThrive app was launched a median of 20.5 times over the intervention period. The median length of use was 2.1 min. Of the individuals who initiated the intervention, 87% (20/23) completed the 6-week intervention. Conclusions: This pilot study provides support for the acceptability and preliminary efficacy of the iCanThrive intervention. Future work should validate the intervention in a larger randomized controlled study. It is important to develop scalable interventions that meet the psychosocial needs of different cancer populations. The modular structure of the iCanThrive app and phone coaching could impact a large population of survivors of women’s cancer. %R 10.2196/15750 %U http://cancer.jmir.org/2020/1/e15750/ %U https://doi.org/10.2196/15750 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 9 %N 1 %P e14544 %T Development of a Core Set of Patient-Reported Outcomes for Population-Based Cancer Survivorship Research: Protocol for an Australian Consensus Study %A Ramsey,Imogen %A Corsini,Nadia %A Hutchinson,Amanda D %A Marker,Julie %A Eckert,Marion %+ Rosemary Bryant AO Research Centre, School of Nursing and Midwifery and UniSA Cancer Research Institute, University of South Australia, City East Campus, North Terrace, Adelaide, 5001, Australia, 61 883022129, imogen.ramsey@unisa.edu.au %K cancer survivorship %K quality of life %K patient-reported outcomes %K core outcome set %K Delphi study %K consensus %D 2020 %7 28.1.2020 %9 Protocol %J JMIR Res Protoc %G English %X Background: Core outcome sets seek to improve the consistency and quality of research by providing agreed-upon recommendations regarding what outcomes should be measured as a minimum for a population and setting. The problems arising from a lack of outcome standardization in population-based cancer survivorship research indicate the need for agreement on a core set of patient-reported outcomes (PROs) to enhance data quality, consistency, and comparability. Objective: This study aims to identify a core set of PROs, representing the most important issues impacting on cancer survivors' long-term health, functioning and quality of life, to inform population-based research on cancer survivorship. Methods: In Phase I, a list of all potentially important outcomes will be generated through focus group discussions with cancer survivors and a review of measures for assessing quality of life in cancer survivorship. The consolidated list will be advanced to Phase II, where a stakeholder consensus process will be conducted with national experts in cancer survivorship to refine and prioritize the outcomes into a core outcome set. The process will consist of a two-round Delphi survey and a consensus meeting. Cancer survivors, oncology health care professionals, and potential end users of the core outcome set with expertise in cancer survivorship research or policy will be invited to participate. In Phase III, recommended measures for assessment of the core outcome set will be selected with advice from experts on the assessment, analysis, and interpretation of PROs. Results: As of April 2019, data collection for Phase I is complete and data analysis is underway. These data will inform the list of outcomes to be advanced into Phase II. Recruitment for Phase II will commence in June 2019, and it is anticipated that it will take 6 months to complete the three-step consensus process and identify a provisional core outcome set. The study results are expected to be published in early 2020. Conclusions: Expert consensus-driven recommendations on outcome measurement will facilitate the inclusion of survivorship outcomes considered important by cancer survivors and health professionals in future research. Adoption of the core outcome set will enable comparison and synthesis of evidence across studies and enhance the quality of PRO data collected in cancer survivorship research, particularly when applied to address macro-level questions. International Registered Report Identifier (IRRID): DERR1-10.2196/14544 %M 32012089 %R 10.2196/14544 %U http://www.researchprotocols.org/2020/1/e14544/ %U https://doi.org/10.2196/14544 %U http://www.ncbi.nlm.nih.gov/pubmed/32012089 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 5 %N 2 %P e12090 %T Evaluation of a Technology-Based Survivor Care Plan for Breast Cancer Survivors: Pre-Post Pilot Study %A Laufer,Talya %A Lerner,Bryan %A Petrich,Anett %A Quinn,Anna M %A Ernst,Leah %A Roop,Alicin %A Knoblauch,Janet %A Leasure,Nick C %A Jaslow,Rebecca J %A Hegarty,Sarah %A Leader,Amy %A Barsevick,Andrea %+ Division of Population Science, Department of Medical Oncology, Thomas Jefferson University, 834 Chestnut Street, Suite 314, Philadelphia, PA, 19107, United States, 1 215 955 7739, amy.leader@jefferson.edu %K cancer survivor %K care plan %K technology %K patient activation %D 2019 %7 20.12.2019 %9 Original Paper %J JMIR Cancer %G English %X Background: As of 2016, almost 16 million individuals were cancer survivors, including over 3.5 million survivors of breast cancer. Because cancer survivors are living longer and have unique health care needs, the Institute of Medicine proposed a survivor care plan as a way to alleviate the many medical, emotional, and care coordination problems of survivors. Objective: This pilot study for breast cancer survivors was undertaken to: (1) examine self-reported changes in knowledge, confidence, and activation from before receipt to after receipt of a survivor care plan; and (2) describe survivor preferences for, and satisfaction with, a technology-based survivor care plan. Methods: A single group pretest-posttest design was used to study breast cancer survivors in an academic cancer center and a community cancer center during their medical visit after they completed chemotherapy. The intervention was a technology-based survivor care plan. Measures were taken before, immediately after, and 1 month after receipt of the survivor care plan. Results: A total of 38 breast cancer survivors agreed to participate in the study. Compared to baseline levels before receipt of the survivor care plan, participants reported increased knowledge both immediately after its receipt at the academic center (P<.001) and the community center (P<.001) as well as one month later at the academic center (P=.002) and the community center (P<.001). Participants also reported increased confidence immediately following receipt of the survivor care plan at the academic center (P=.63) and the community center (P=.003) and one month later at both the academic center (P=.63) and the community center (P<.001). Activation was increased from baseline to post-survivor care plan at both the academic center (P=.05) and community center (P<.001) as well as from baseline to 1-month follow-up at the academic center (P=.56) and the community center (P<.001). Overall, community center participants had lower knowledge, confidence, and activation at baseline compared with academic center participants. Overall, 22/38 (58%) participants chose the fully functional electronic survivor care plan. However, 12/23 (52%) in the community center group chose the paper version compared to 4/15 (27%) in the academic center group. Satisfaction with the format (38/38 participants) and the content (37/38 participants) of the survivor care plan was high for both groups. Conclusions: This study provides evidence that knowledge, confidence, and activation of survivors were associated with implementation of the survivor care plan. This research agrees with previous research showing that cancer survivors found the technology-based survivor care plan to be acceptable. More research is needed to determine the optimal approach to survivor care planning to ensure that all cancer survivors can benefit from it. %M 31859683 %R 10.2196/12090 %U http://cancer.jmir.org/2019/2/e12090/ %U https://doi.org/10.2196/12090 %U http://www.ncbi.nlm.nih.gov/pubmed/31859683 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 12 %P e13929 %T Investigating How Bowel Cancer Survivors Discuss Exercise and Physical Activity Within Web-Based Discussion Forums: Qualitative Analysis %A Olsen,Alicia %A Keogh,Justin %A Sargeant,Sally %+ Faculty of Health Sciences and Medicine, Bond University, University Drive, Robina, 4226, Australia, 61 0449821196, aolsen@bond.edu.au %K exercise %K physical activity %K cancer %K qualitative research %K patient portals %K internet %D 2019 %7 16.12.2019 %9 Original Paper %J J Med Internet Res %G English %X Background: Online cancer support group discussions enable patients to share their illness experience with others. The sharing of technical and emotional support information and the ability to ask for advice are some of the primary discussions shared online. People with bowel cancer can also use these forums to support each other by sharing information based on personal experiences. This type of support provides newly diagnosed patients with advice about several topics, including exercise from those who have been there. Information gathered from online discussion boards may complement the advice received by health professionals. Objective: This study aimed to explore the nature of information related to exercise and physical activity exchanged online for cancer survivors. Methods: A public open access bowel cancer discussion board was searched for threads containing information related to physical activity or exercise. Keywords such as exercise, physical activity, moving, walking, lifting, weights training, and resistance were used to search for threads (online conversations) related to exercise or physical activity. Only threads initiated by bowel cancer patients or survivors were included. From more than 6000 posts, the inclusion criteria yielded 75 threads for analysis. Inductive thematic analysis was conducted across all included threads. Results: Analysis yielded 3 main themes: level of exercise competence, beneficial dimensions of exercise, and faith in the knowledge. Level of exercise competence illustrated the varying definitions of exercise that members of the forum discussed in the forum. Beneficial dimensions of exercise revealed that forum members shared both the spiritual benefits associated with exercise as well as the physical benefits or goodness that they feel exercise or physical activity provides them. Faith in the knowledge of exercise demonstrated that forum members were aware of the general benefits of exercise but felt disappointed that it did not keep the cancer at bay. However, members also had faith that exercise would keep them healthy after diagnosis and treatment. Conclusions: The analysis revealed that people with bowel cancer discuss exercise and physical activity online and that they view exercise as having a mostly positive influence on their cancer journey. However, personal definitions of exercise became a source of conflict within the group. People with bowel cancer seeking information about exercise may benefit from participating in online support groups as it appears that there are many similar others willing to share their personal experiences with exercise. In addition, health care professionals responsible for caring for people with bowel cancer may use these findings to discuss exercise with their patients while being mindful of how they may view exercise. %M 31841117 %R 10.2196/13929 %U https://www.jmir.org/2019/12/e13929 %U https://doi.org/10.2196/13929 %U http://www.ncbi.nlm.nih.gov/pubmed/31841117 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 11 %P e17045 %T Gimme My Damn Data (and Let Patients Help!): The #GimmeMyDamnData Manifesto %A deBronkart,Dave %A Eysenbach,Gunther %+ JMIR Publications, 130 Queens Quay E, Ste. 1100, Toronto, ON, Canada, 1 416 583 2040, editor@jmir.org %K data %K participatory medicine %K ehealth %D 2019 %7 22.11.2019 %9 Discussion Paper %J J Med Internet Res %G English %X Ten years ago, in 2009, “e-Patient Dave” deBronkart delivered an influential keynote speech at the Medicine 2.0 conference in Toronto, organized by the Journal of Medical Internet Research’s (JMIR’s) editor-in-chief Gunther Eysenbach, who themed the conference around the topics of participation, openness, collaboration, apomediation, and social networking to improve health care for the 21st century—with patient participation being a major component. Many see this as a defining event within the participatory medicine movement, perhaps the beginning of a social movement, similar to the women’s rights movement, with the title of Dave’s keynote “Gimme my damn data” becoming a rallying cry and hashtag for patients demanding more access to their electronic health records. On the occasion of the 20th anniversary of JMIR (and 10 years after the keynote), we are celebrating the impact of the keynote for the participatory medicine movement and #gimmemydamndata (also #GMDD) by publishing the transcript of these initial conversations as a manifesto of patients’ rights to access their data and their right to save their lives. %M 31755873 %R 10.2196/17045 %U http://www.jmir.org/2019/11/e17045/ %U https://doi.org/10.2196/17045 %U http://www.ncbi.nlm.nih.gov/pubmed/31755873 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 8 %N 11 %P e14427 %T Nutritional Assessment of Childhood Cancer Survivors (the Swiss Childhood Cancer Survivor Study-Nutrition): Protocol for a Multicenter Observational Study %A Belle,Fabiën Naomi %A Beck Popovic,Maja %A Ansari,Marc %A Otth,Maria %A Kuehni,Claudia Elisabeth %A Bochud,Murielle %+ Institute of Social and Preventive Medicine, University of Bern, Mittelstrasse 43, Bern, 3012, Switzerland, 41 31 631 33 47, fabien.belle@ispm.unibe.ch %K child %K cancer survivors %K urine specimen collection %K diet surveys %K food frequency questionnaire %K Swiss Childhood Cancer Registry %K Switzerland %D 2019 %7 18.11.2019 %9 Original Paper %J JMIR Res Protoc %G English %X Background: Childhood cancer survivors are at high risk of developing adverse late health effects. Poor nutritional intake may contribute to this risk, but information about dietary intake is limited. Objective: This study will assess childhood cancer survivors’ dietary intake and compare two dietary assessment tools: a self-reported food frequency questionnaire, and dietary measurements from urine spot samples. Methods: In a substudy of the Swiss Childhood Cancer Survivor Study (SCCSS), SCCSS-Nutrition, we assessed childhood cancer survivors’ dietary intake via a validated food frequency questionnaire. We sent a urine spot collection kit to a subset of 212 childhood cancer survivors from the French-speaking region of Switzerland to analyze urinary sodium, potassium, urea, urate, creatinine, and phosphate content. We will compare the food frequency questionnaire results with the urine spot analyses to quantify childhood cancer survivors’ intake of various nutrients. We collected data between March 2016 and March 2018. Results: We contacted 1599 childhood cancer survivors, of whom 919 (57.47%) returned a food frequency questionnaire. We excluded 11 childhood cancer survivors who were pregnant or were breastfeeding, 35 with missing dietary data, and 71 who had unreliable food frequency questionnaire data, resulting in 802 childhood cancer survivors available for food frequency questionnaire analyses. To a subset of 212 childhood cancer survivors in French-speaking Switzerland we sent a urine spot collection kit, and 111 (52.4%) returned a urine sample. We expect to have the results from analyses of these samples in mid-2019. Conclusions: The SCCSS-Nutrition study has collected in-depth dietary data that will allow us to assess dietary intake and quality and compare two dietary assessment tools. This study will contribute to the knowledge of nutrition among childhood cancer survivors and is a step toward surveillance guidelines and targeted nutritional recommendations for childhood cancer survivors in Switzerland. Trial Registration: ClinicalTrials.gov NCT03297034; https://clinicaltrials.gov/ct2/show/NCT03297034 International Registered Report Identifier (IRRID): DERR1-10.2196/14427 %M 31738177 %R 10.2196/14427 %U http://www.researchprotocols.org/2019/11/e14427/ %U https://doi.org/10.2196/14427 %U http://www.ncbi.nlm.nih.gov/pubmed/31738177 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 10 %P e14360 %T A Research Roadmap: Connected Health as an Enabler of Cancer Patient Support %A Signorelli,Gabriel Ruiz %A Lehocki,Fedor %A Mora Fernández,Matilde %A O'Neill,Gillian %A O'Connor,Dominic %A Brennan,Louise %A Monteiro-Guerra,Francisco %A Rivero-Rodriguez,Alejandro %A Hors-Fraile,Santiago %A Munoz-Penas,Juan %A Bonjorn Dalmau,Mercè %A Mota,Jorge %A Oliveira,Ricardo B %A Mrinakova,Bela %A Putekova,Silvia %A Muro,Naiara %A Zambrana,Francisco %A Garcia-Gomez,Juan M %+ Oncoavanze, Calle Presidente Cardenas, 8 Local Oncoavanze, Seville, 41013, Spain, 34 954 231 459, gasignorelli@gmail.com %K cancer %K Connected Health %K mHealth %K eHealth %K mental health %K physical activity %K rehabilitation %K wearable %K Internet of Things %K quality of life %D 2019 %7 29.10.2019 %9 Viewpoint %J J Med Internet Res %G English %X The evidence that quality of life is a positive variable for the survival of cancer patients has prompted the interest of the health and pharmaceutical industry in considering that variable as a final clinical outcome. Sustained improvements in cancer care in recent years have resulted in increased numbers of people living with and beyond cancer, with increased attention being placed on improving quality of life for those individuals. Connected Health provides the foundations for the transformation of cancer care into a patient-centric model, focused on providing fully connected, personalized support and therapy for the unique needs of each patient. Connected Health creates an opportunity to overcome barriers to health care support among patients diagnosed with chronic conditions. This paper provides an overview of important areas for the foundations of the creation of a new Connected Health paradigm in cancer care. Here we discuss the capabilities of mobile and wearable technologies; we also discuss pervasive and persuasive strategies and device systems to provide multidisciplinary and inclusive approaches for cancer patients for mental well-being, physical activity promotion, and rehabilitation. Several examples already show that there is enthusiasm in strengthening the possibilities offered by Connected Health in persuasive and pervasive technology in cancer care. Developments harnessing the Internet of Things, personalization, patient-centered design, and artificial intelligence help to monitor and assess the health status of cancer patients. Furthermore, this paper analyses the data infrastructure ecosystem for Connected Health and its semantic interoperability with the Connected Health economy ecosystem and its associated barriers. Interoperability is essential when developing Connected Health solutions that integrate with health systems and electronic health records. Given the exponential business growth of the Connected Health economy, there is an urgent need to develop mHealth (mobile health) exponentially, making it both an attractive and challenging market. In conclusion, there is a need for user-centered and multidisciplinary standards of practice to the design, development, evaluation, and implementation of Connected Health interventions in cancer care to ensure their acceptability, practicality, feasibility, effectiveness, affordability, safety, and equity. %M 31663861 %R 10.2196/14360 %U http://www.jmir.org/2019/10/e14360/ %U https://doi.org/10.2196/14360 %U http://www.ncbi.nlm.nih.gov/pubmed/31663861 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 5 %N 2 %P e13150 %T Mediators of a Physical Activity Intervention on Cognition in Breast Cancer Survivors: Evidence From a Randomized Controlled Trial %A Hartman,Sheri J %A Weiner,Lauren S %A Nelson,Sandahl H %A Natarajan,Loki %A Patterson,Ruth E %A Palmer,Barton W %A Parker,Barbara A %A Sears,Dorothy D %+ Department of Family Medicine and Public Health, University of California, San Diego, 3855 Health Sciences Drive, #0901, La Jolla, CA, 92037, United States, 1 8585349235, sjhartman@ucsd.edu %K cognitive function %K exercise %K anxiety %K neoplasms %D 2019 %7 11.10.2019 %9 Original Paper %J JMIR Cancer %G English %X Background: Emerging research suggests that increasing physical activity can help improve cognition among breast cancer survivors. However, little is known about the mechanism through which physical activity impacts cancer survivors’ cognition. Objective: The objective of this secondary analysis examined physical and psychological function potentially linking physical activity with changes in cognition among breast cancer survivors in a randomized controlled trial where the exercise arm had greater improvements in cognition than the control arm. Methods: A total of 87 sedentary breast cancer survivors were randomized to a 12-week physical activity intervention (n=43) or control condition (n=44). Objectively measured processing speed (National Institutes of Health Toolbox Oral Symbol Digit), self-reported cognition (patient-reported outcomes measurement information system [PROMIS] cognitive abilities), PROMIS measures of physical and psychological function (depression, anxiety, fatigue, and physical functioning), and plasma biomarkers (brain-derived neurotrophic factor, homeostatic model assessment 2 of insulin resistance, and C-reactive protein [CRP]) were collected at baseline and 12 weeks. Linear mixed-effects models tested intervention effects on changes in physical and psychological function variables and biomarkers. Bootstrapping was used to assess mediation. Exploratory analyses examined self-reported cognitive abilities and processing speed as mediators of the intervention effect on physical functioning. Results: Participants in the exercise arm had significantly greater improvements in physical functioning (beta=1.23; 95% CI 2.42 to 0.03; P=.049) and reductions in anxiety (beta=−1.50; 95% CI −0.07 to −2.94; P=.04) than those in the control arm. Anxiety significantly mediated the intervention effect on cognitive abilities (bootstrap 95% CI −1.96 to −0.06), whereas physical functioning did not (bootstrap 95% CI −1.12 to 0.10). Neither anxiety (bootstrap 95% CI −1.18 to 0.74) nor physical functioning (bootstrap 95% CI −2.34 to 0.15) mediated the intervention effect on processing speed. Of the biomarkers, only CRP had greater changes in the exercise arm than the control arm (beta=.253; 95% CI −0.04 to 0.57; P=.09), but CRP was not associated with cognition; therefore, none of the biomarker measures mediated the intervention effect on cognition. Neither cognitive abilities (bootstrap 95% CI −0.06 to 0.68) nor processing speed (bootstrap 95% CI −0.15 to 0.63) mediated the intervention effect on physical function. Conclusions: Physical activity interventions may improve self-reported cognition by decreasing anxiety. If supported by larger studies, reducing anxiety may be an important target for improving self-reported cognition among cancer survivors. Trial Registration: ClinicalTrials.gov NCT02332876; https://clinicaltrials.gov/ct2/show/NCT02332876 %M 31605514 %R 10.2196/13150 %U https://cancer.jmir.org/2019/2/e13150 %U https://doi.org/10.2196/13150 %U http://www.ncbi.nlm.nih.gov/pubmed/31605514 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 9 %P e13463 %T An Assessment of Physical Activity Data Collected via a Smartphone App and a Smart Band in Breast Cancer Survivors: Observational Study %A Chung,Il Yong %A Jung,Miyeon %A Lee,Sae Byul %A Lee,Jong Won %A Park,Yu Rang %A Cho,Daegon %A Chung,Haekwon %A Youn,Soyoung %A Min,Yul Ha %A Park,Hye Jin %A Lee,Minsun %A Chung,Seockhoon %A Son,Byung Ho %A Ahn,Sei-Hyun %+ Department of Surgery, Asan Medical Center, University of Ulsan College of Medicine, 88, Olympic-ro 43-gil, Songpa-gu, 05505, Seoul,, Republic of Korea, 82 10 7209 4620, newstar153@hanmail.net %K telemedicine %K breast neoplasms %K mobile apps %K quality of life %K stress, psychological %K patient compliance %K smartphone %K mobile phone %K wearable electronic devices %K survivorship %D 2019 %7 06.09.2019 %9 Original Paper %J J Med Internet Res %G English %X Background: Although distress screening is crucial for cancer survivors, it is not easy for clinicians to recognize distress. Physical activity (PA) data collected by mobile devices such as smart bands and smartphone apps have the potential to be used to screen distress in breast cancer survivors. Objective: The aim of this study was to assess data collection rates of smartphone apps and smart bands in terms of PA data, investigate the correlation between PA data from mobile devices and distress-related questionnaires from smartphone apps, and demonstrate factors associated with data collection with smart bands and smartphone apps in breast cancer survivors. Methods: In this prospective observational study, patients who underwent surgery for breast cancer at Asan Medical Center, Seoul, Republic of Korea, between June 2017 and March 2018 were enrolled and asked to use both a smartphone app and smart band for 6 months. The overall compliance rates of the daily PA data collection via the smartphone walking apps and wearable smart bands were analyzed in a within-subject manner. The longitudinal daily collection rates were calculated to examine the dropout pattern. We also performed multivariate linear regression analysis to examine factors associated with compliance with daily collection. Finally, we tested the correlation between the count of daily average steps and distress level using Pearson correlation analysis. Results: A total of 160 female patients who underwent breast cancer surgeries were enrolled. The overall compliance rates for using a smartphone app and smart bands were 88.0% (24,224/27,513) and 52.5% (14,431/27,513), respectively. The longitudinal compliance rate for smartphone apps was 77.8% at day 180, while the longitudinal compliance rate for smart bands rapidly decreased over time, reaching 17.5% at day 180. Subjects who were young, with other comorbidities, or receiving antihormonal therapy or targeted therapy showed significantly higher compliance rates to the smartphone app. However, no factor was associated with the compliance rate to the smart band. In terms of the correlation between the count of daily steps and distress level, step counts collected via smart band showed a significant correlation with distress level. Conclusions: Smartphone apps or smart bands are feasible tools to collect data on the physical activity of breast cancer survivors. PA data from mobile devices are correlated with participants’ distress data, which suggests the potential role of mobile devices in the management of distress in breast cancer survivors. Trial Registration: ClinicalTrials.gov NCT03072966; https://clinicaltrials.gov/ct2/show/NCT03072966 %M 31493319 %R 10.2196/13463 %U https://www.jmir.org/2019/9/e13463 %U https://doi.org/10.2196/13463 %U http://www.ncbi.nlm.nih.gov/pubmed/31493319 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 5 %N 2 %P e10692 %T Usefulness and Usability of a Personal Health Record and Survivorship Care Plan for Colorectal Cancer Survivors: Survey Study %A Tarver,Will L %A Robb,Bruce W %A Haggstrom,David A %+ VA Health Services Research and Development, Center for Health Information & Communication, Richard L Roudebush VA Medical Center, 1481 W 10th St, Indianapolis, IN, 46202, United States, 1 3179882616, willi.tarver@va.gov %K personal health record %K colorectal cancer %K survivorship %K digital health %K digital medicine %D 2019 %7 20.08.2019 %9 Original Paper %J JMIR Cancer %G English %X 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. %M 31432780 %R 10.2196/10692 %U https://cancer.jmir.org/2019/2/e10692/ %U https://doi.org/10.2196/10692 %U http://www.ncbi.nlm.nih.gov/pubmed/31432780 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 5 %N 2 %P e13543 %T Feasibility of a Mobile Phone App and Telephone Coaching Survivorship Care Planning Program Among Spanish-Speaking Breast Cancer Survivors %A Nápoles,Anna María %A Santoyo-Olsson,Jasmine %A Chacón,Liliana %A Stewart,Anita L %A Dixit,Niharika %A Ortiz,Carmen %+ Division of Intramural Research, National Institute on Minority Health and Health Disparities, National Institutes of Health, 9000 Rockville Pike, Bldg 3, 5/E08, Bethesda, MD, 20892-0001, United States, 1 301 496 3348, anna.napoles@nih.gov %K Hispanic Americans %K cancer survivors %K mobile apps %K feasibility studies %D 2019 %7 09.07.2019 %9 Original Paper %J JMIR Cancer %G English %X 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. %M 31290395 %R 10.2196/13543 %U http://cancer.jmir.org/2019/2/e13543/ %U https://doi.org/10.2196/13543 %U http://www.ncbi.nlm.nih.gov/pubmed/31290395 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 7 %N 6 %P e14136 %T A Mobile System to Improve Quality of Life Via Energy Balance in Breast Cancer Survivors (BENECA mHealth): Prospective Test-Retest Quasiexperimental Feasibility Study %A Lozano-Lozano,Mario %A Cantarero-Villanueva,Irene %A Martin-Martin,Lydia %A Galiano-Castillo,Noelia %A Sanchez,Maria-José %A Fernández-Lao,Carolina %A Postigo-Martin,Paula %A Arroyo-Morales,Manuel %+ Department of Physical Therapy, Faculty of Health Sciences, University of Granada, Avda de la Ilustración, 60, Granada,, Spain, 34 958248764, irenecantarero@ugr.es %K mHealth %K energy balance %K monitoring %K breast cancer %K survivors %K quality of life %D 2019 %7 25.06.2019 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: Energy balance is defined as the difference between energy expenditure and energy intake. The current state of knowledge supports the need to better integrate mechanistic approaches through effective studies of energy balance in the cancer population because of an observed significant lack of adherence to healthy lifestyle recommendations. To stimulate changes in breast cancer survivors’ lifestyles based on energy balance, our group developed the BENECA (Energy Balance on Cancer) mHealth app. BENECA has been previously validated as a reliable energy balance monitoring system. Objective: Based on our previous results, the goal of this study was to investigate the feasibility of BENECA mHealth in an ecological clinical setting with breast cancer survivors, by studying (1) its feasibility and (2) pretest-posttest differences with regard to breast cancer survivor lifestyles, quality of life (QoL), and physical activity (PA) motivation. Methods: Eighty breast cancer survivors diagnosed with stage I to IIIA and with a body mass index over 25 kg/m2 were enrolled in this prospective test-retest quasi-experimental study. Patients used BENECA mHealth for 8 weeks and were assessed at baseline and the postintervention period. Feasibility main outcomes included percentage of adoption, usage, and attrition; user app quality perception measured with the Mobile App Rating Scale (MARS); satisfaction with the Net Promoter Score (NPS); and barriers and facilitators of its use. Clinical main outcomes included measuring QoL with the European Organization for Research and Treatment of Cancer QoL Questionnaire Core 30 (EORT QLQ-C30), PA assessment with accelerometry, PA motivation measure with a Spanish self-efficacy scale for physical activity (EAF), and body composition with dual-energy x-ray absorptiometry. Statistical tests (using paired-sample t tests) and Kaplan-Meier survival curves were analyzed. Results: BENECA was considered feasible by the breast cancer survivors in terms of use (76%, 58/76), adoption (69%, 80/116), and satisfaction (positive NPS). The app quality score did not make it one of the best-rated apps (mean 3.71, SD 0.47 points out of 5). BENECA mHealth improved the QoL of participants (global health mean difference [MD] 12.83, 95% CI 8.95-16.71, P<.001), and EAF score (global MD 36.99, 95% CI 25.52-48.46, P<.001), daily moderate-to-vigorous PA (MD 7.38, 95% CI 0.39-14.37, P=.04), and reduced body weight (MD −1.42, 95% CI −1.97 to −0.87, P<.001). Conclusions: BENECA mHealth can be considered feasible in a real clinical context to promote behavioral changes in the lifestyles of breast cancer survivors, but it needs to be enhanced to improve user satisfaction with use and functionality. This study highlights the importance of the use of mobile apps based on energy balance and how the QoL of breast cancer survivors can be improved via monitoring. %M 31237570 %R 10.2196/14136 %U http://mhealth.jmir.org/2019/6/e14136/ %U https://doi.org/10.2196/14136 %U http://www.ncbi.nlm.nih.gov/pubmed/31237570 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 5 %N 2 %P e12603 %T Pneumococcal Vaccination Utilization Among Hispanic Long-Term Colorectal Cancer Survivors: Cross-Sectional Assessment of Claims %A Moran,Ryan J %A Waalen,Jill %A Murphy,James %A Nalawade,Vinit %A Schiaffino,Melody %+ Department of Family Medicine and Public Health, University of California San Diego, 9500 Gilman Drive, Mail Code #0811, La Jolla, CA, 92093, United States, 1 8582258535, rjmoran@ucsd.edu %K Hispanic Americans %K cancer survivors %K medicare %K preventive medicine %K pneumococcal vaccines %D 2019 %7 13.05.2019 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: Colorectal cancer (CRC) is the second leading cancer-related cause of death in the United States. However, survivorship has been increasing. Both cancer survivors and underserved populations experience unique health-related challenges and disparities that may exist among long-term CRC survivors as it relates to routine preventive care, specifically pneumococcal (PNM) vaccination. Objective: The aim of this study was to explore the relationship between long-term CRC survival and the receipt of PNM vaccine among Hispanic Medicare recipients compared with non-Hispanic populations. Methods: This study is a cross-sectional analysis of the Surveillance, Epidemiology, and End Results (SEER)-Medicare claims data examining ethnic differences in the receipt of PNM vaccination among long-term CRC survivors. Multivariable logistic regression models considered Hispanic ethnicity while controlling for sociodemographic characteristics, comorbidity score, age, tumor stage, and SEER registry. Results: Our sample revealed 32,501 long-term CRC survivors, and 1509 identified as Hispanic (4.64%) based on an established SEER algorithm. In total, 16,252 CRC survivors, or 50.00% of our sample, received a PNM vaccination. We found that Hispanic CRC survivors had 10% decreased odds of having received a PNM vaccine compared with non-Hispanic survivors (P=.03). Conclusions: Disparities likely exist in the utilization of PNM vaccination among long-term CRC survivors. Among Medicare beneficiaries, the use of claims data regarding PNM vaccination highlights the relatively poor utilization of guideline-directed preventive care. %M 31094341 %R 10.2196/12603 %U http://publichealth.jmir.org/2019/2/e12603/ %U https://doi.org/10.2196/12603 %U http://www.ncbi.nlm.nih.gov/pubmed/31094341 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 5 %P e11855 %T Predictors of Postal or Online Response Mode and Associations With Patient Experience and Satisfaction in the English Cancer Patient Experience Survey %A Pham,Tra My %A Abel,Gary A %A Gomez-Cano,Mayam %A Lyratzopoulos,Georgios %+ Epidemiology of Cancer Healthcare and Outcomes Group, Department of Behavioural Science and Health, University College London, , London,, United Kingdom, 44 2076791719, y.lyratzopoulos@ucl.ac.uk %K cancer %K patient survey %K satisfaction %K experience %K online response %K Web %K internet %D 2019 %7 02.05.2019 %9 Original Paper %J J Med Internet Res %G English %X Background: Patient experience surveys are important tools for improving the quality of cancer services, but the representativeness of responders is a concern. Increasingly, patient surveys that traditionally used postal questionnaires are incorporating an online response option. However, the characteristics and experience ratings of online responders are poorly understood. Objective: We sought to examine predictors of postal or online response mode, and associations with patient experience in the (English) Cancer Patient Experience Survey. Methods: We analyzed data from 71,186 patients with cancer recently treated in National Health Service hospitals who responded to the Cancer Patient Experience Survey 2015. Using logistic regression, we explored patient characteristics associated with greater probability of online response and whether, after adjustment for patient characteristics, the online response was associated with a more or less critical evaluation of cancer care compared to the postal response. Results: Of the 63,134 patients included in the analysis, 4635 (7.34%) responded online. In an adjusted analysis, male (women vs men: odds ratio [OR] 0.50, 95% confidence interval [CI] 0.46-0.54), younger (<55 vs 65-74 years: OR 3.49, 95% CI 3.21-3.80), least deprived (most vs least deprived quintile: OR 0.57, 95% CI 0.51-0.64), and nonwhite (nonwhite vs white ethnic group: OR 1.37, 95% CI 1.24-1.51) patients were more likely to respond online. Compared to postal responders, after adjustment for patient characteristics, online responders had a higher likelihood of reporting an overall satisfied experience of care (OR 1.24, 95% CI 1.16-1.32). For 34 of 49 other items, online responders more frequently reported a less than positive experience of care (8 reached statistical significance), and the associations were positive for the remaining 15 of 49 items (2 reached statistical significance). Conclusions: In the context of a national survey of patients with cancer, online and postal responders tend to differ in their characteristics and rating of satisfaction. Associations between online response and reported experience were generally small and mostly nonsignificant, but with a tendency toward less than positive ratings, although not consistently. Whether the observed associations between response mode and reported experience were causal needs to be examined using experimental survey designs. %M 31045503 %R 10.2196/11855 %U https://www.jmir.org/2019/5/e11855/ %U https://doi.org/10.2196/11855 %U http://www.ncbi.nlm.nih.gov/pubmed/31045503 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 7 %N 4 %P e12547 %T Text Message Responsivity in a 2-Way Short Message Service Pilot Intervention With Adolescent and Young Adult Survivors of Cancer %A Psihogios,Alexandra M %A Li,Yimei %A Butler,Eliana %A Hamilton,Jessica %A Daniel,Lauren C %A Barakat,Lamia P %A Bonafide,Christopher P %A Schwartz,Lisa A %+ The Children's Hospital of Philadelphia, 3501 Civic Center Boulevard, Philadelphia, PA, 19104, United States, 1 267 314 0164, psihogiosa@email.chop.edu %K mHealth %K adolescents %K young adults %K cancer %K chronic illness %K self-management %D 2019 %7 18.04.2019 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: Text message interventions hold promise for adolescents and young adults (AYAs) with chronic health conditions, including childhood cancer survivors; however, engagement is often suboptimal. Limited research has studied mobile health intervention outcomes beyond efficacy. Understanding responsivity to different types of text messages (ie, when a participant texts back) can provide practical, actionable information to optimize engagement in future projects.Objective: Within a 2-way text messaging study in AYAs who recently completed treatment for cancer, we sought to evaluate text message responsivity across different types of text messages. Methods: AYAs who recently completed treatment for cancer (n=26; mean age=16 years; 62% female, 16/26 participants) received 2-way text messages about survivorship health topics over a 16-week period. Using participants’ text message log data, we coded responsivity to text messages and evaluated trends in responsivity to unprompted text messages and prompted text messages of varying content (eg, medication reminders, appointment reminders, and texts about personal experiences as a cancer survivor). Results: Across prompted and unprompted text messages, responsivity rapidly decreased (P ≤.001 and =.01, respectively) and plateaued by the third week of the intervention. However, participants were more responsive to prompted text messages (mean responsivity=46% by week 16) than unprompted messages (mean responsivity=10% by week 16). They also demonstrated stable responsivity to certain prompted content: medication reminders, appointment reminders, goal motivation, goal progress, and patient experience texts. Conclusions: Our methodology of evaluating text message responsivity revealed important patterns of engagement in a 2-way text message intervention for AYA cancer survivors. %M 30998225 %R 10.2196/12547 %U http://mhealth.jmir.org/2019/4/e12547/ %U https://doi.org/10.2196/12547 %U http://www.ncbi.nlm.nih.gov/pubmed/30998225 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 7 %N 1 %P e10918 %T Breast, Prostate, and Colorectal Cancer Survivors’ Experiences of Using Publicly Available Physical Activity Mobile Apps: Qualitative Study %A Roberts,Anna L %A Potts,Henry WW %A Koutoukidis,Dimitrios A %A Smith,Lee %A Fisher,Abigail %+ Research Department of Behavioural Science & Health, University College London, Gower Street, London, WC1E 6BT, United Kingdom, 44 02076791723, anna.roberts.15@ucl.ac.uk %K physical activity %K health behavior %K cancer survivors %K mobile apps %K mHealth %K digital health %D 2019 %7 04.01.2019 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: Physical activity (PA) can improve a range of outcomes following a cancer diagnosis. These include an improvement in experience of side effects of treatment (eg, fatigue) and management of comorbid conditions. PA might also increase survival and reduce recurrence. Digital interventions have shown potential for PA promotion among cancer survivors, but most in a previous review were Web-based, and few studies used mobile apps. There are many PA apps available for general public use, but it is unclear whether these are suitable as a PA intervention after a cancer diagnosis. Objective: This study sought posttreatment nonmetastatic breast, prostate, and colorectal cancer survivors’ opinions of using smartphone apps to promote PA and gathered their views on existing publicly available PA apps to inform a future intervention. Methods: Each participant was randomly assigned to download 2 of 4 apps (Human, The Walk, The Johnson & Johnson Official 7 Minute Workout, and Gorilla Workout). Participants used each app for 1 week consecutively. In-depth semistructured telephone interviews were then conducted to understand participants’ experiences of using the apps and how app-based PA interventions could be developed for cancer survivors. The interviews were analyzed using thematic analysis. Results: Thirty-two participants took part: 50% (16/32) had prostate cancer, 25% (8/32) had breast cancer, and 25% (8/32) had colorectal cancer. Three core themes were identified. The first theme was that multiple factors affect engagement with PA apps and this is highly personalized. Factors affecting engagement included participants’ perceptions of (1) the advantages and disadvantages of using apps to support PA, (2) the relevance of the app to the user (eg, in terms of cancer-related factors, their PA goals, the difficulty level of the app, the way in which they interact with their mobile phone, and the extent to which the app fits with their self-identity), (3) the quality of the app (eg, usability, accuracy, quality of production, and scientific evidence-base), and (4) the behavior change techniques used to promote PA. In the second theme, participants recommended that apps that promote walking are most appealing, as walking removes many barriers to PA. Finally, the participants suggested that PA apps should be integrated into cancer care, as they valued guidance and recommendations from health care professionals. Conclusions: This sample of breast, prostate, and colorectal cancer survivors was receptive to the use of apps to promote PA. Although no publicly available PA app was deemed wholly suitable, many suggestions for adaptation and intervention development were provided. The results can inform the development of an app-based PA intervention for cancer survivors. They also highlight the wide-ranging and dynamic influences on engagement with digital interventions, which can be applied to other evaluations of mobile health products in other health conditions and other health behaviors. %M 30609982 %R 10.2196/10918 %U http://mhealth.jmir.org/2019/1/e10918/ %U https://doi.org/10.2196/10918 %U http://www.ncbi.nlm.nih.gov/pubmed/30609982 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 2 %N 2 %P e19 %T A Stress Management App Intervention for Cancer Survivors: Design, Development, and Usability Testing %A Børøsund,Elin %A Mirkovic,Jelena %A Clark,Matthew M %A Ehlers,Shawna L %A Andrykowski,Michael A %A Bergland,Anne %A Westeng,Marianne %A Solberg Nes,Lise %+ Center for Shared Decision Making and Collaborative Care Research, Division of Medicine, Oslo University Hospital, PO Box 4950 Nydalen, Oslo, 0424, Norway, 47 92667262, elin.borosund@rr-research.no %K stress management %K mindfulness %K cancer %K eHealth %K mHealth %K mobile apps %K development %K usability %K user-centered design %K mobile phones %D 2018 %7 06.09.2018 %9 Original Paper %J JMIR Formativ Res %G English %X Background: Distress is prevalent in cancer survivors. Stress management interventions can reduce distress and improve quality of life for cancer patients, but many people with cancer are unfortunately not offered or able to attend such in-person stress management interventions. Objective: The objective of this study was to develop an evidence-based stress management intervention for patients living with cancer that can be delivered electronically with wide reach and dissemination. This paper describes the design and development process of a technology-based stress management intervention for cancer survivors, including the exploration phase, intervention content development, iterative software development (including design, development, and formative evaluation of low- and high-level prototypes), and security and privacy considerations. Methods: Design and development processes were iterative and performed in close collaboration with key stakeholders (N=48). In the exploration phase, identifying needs and requirements for the intervention, 28 participants gave input, including male and female cancer survivors (n=11) representing a wide age range (31-81 years) and cancer diagnoses, healthcare providers (n=8) including psychosocial oncology experts, and eHealth experts (n=9) including information technology design and developers. To ensure user involvement in each phase various user-centered design and service design methods were included, such as interviews, usability testing, and think aloud processes. Overall, participants were involved usability testing in the software development and formative evaluation phase, including cancer survivors (n=6), healthy volunteers (n=7), health care providers (n=2), and eHealth experts (n=5). Intervention content was developed by stress management experts based on well-known cognitive behavioral stress management strategies and adjusted to electronic format through multiple iterations with stakeholders. Privacy and security issues were considered throughout. Results: The design and development process identified a variety of stakeholder requirements. Cancer survivors preferred stress management through a mobile app rather than through a personal computer (PC) and identified usefulness, easy access, user friendliness, use of easily understandable language, and many brief sections rather than longer ones as important components of the intervention. These requirements were also supported by recommendations from health care providers and eHealth experts. The final intervention was named StressProffen and the hospital Privacy and Security Protection Committee was part of the final intervention approval to also ensure anchoring in the hospital organization. Conclusions: Interventions, even evidence-based, have little impact if not actively used. This study illustrates how user-centered design and service design can be applied to identify and incorporate essential stakeholder aspects in the entire design and development process. In combination with evidence-based concepts, this process facilitated development of a stress management intervention truly designed for the end users, in this case, cancer survivors. Trial Registration: ClinicalTrials.gov NCT02939612; https://clinicaltrials.gov/ct2/show/NCT02939612 (Archived at WebCite at http://www.webcitation.org/71l9HcfcB) %M 30684438 %R 10.2196/formative.9954 %U http://formative.jmir.org/2018/2/e19/ %U https://doi.org/10.2196/formative.9954 %U http://www.ncbi.nlm.nih.gov/pubmed/30684438 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 4 %N 1 %P e10 %T Assessing Unmet Information Needs of Breast Cancer Survivors: Exploratory Study of Online Health Forums Using Text Classification and Retrieval %A McRoy,Susan %A Rastegar-Mojarad,Majid %A Wang,Yanshan %A Ruddy,Kathryn J %A Haddad,Tufia C %A Liu,Hongfang %+ Department of Electrical Engineering and Computer Science, University of Wisconsin-Milwaukee, College of Engineering & Applied Science, PO Box 784, Milwaukee, WI, 53201, United States, 1 414 229 6695, mcroy@uwm.edu %K online health forum %K automated content analysis %K text retrieval %K text classification %D 2018 %7 15.05.2018 %9 Original Paper %J JMIR Cancer %G English %X Background: Patient education materials given to breast cancer survivors may not be a good fit for their information needs. Needs may change over time, be forgotten, or be misreported, for a variety of reasons. An automated content analysis of survivors' postings to online health forums can identify expressed information needs over a span of time and be repeated regularly at low cost. Identifying these unmet needs can guide improvements to existing education materials and the creation of new resources. Objective: The primary goals of this project are to assess the unmet information needs of breast cancer survivors from their own perspectives and to identify gaps between information needs and current education materials. Methods: This approach employs computational methods for content modeling and supervised text classification to data from online health forums to identify explicit and implicit requests for health-related information. Potential gaps between needs and education materials are identified using techniques from information retrieval. Results: We provide a new taxonomy for the classification of sentences in online health forum data. 260 postings from two online health forums were selected, yielding 4179 sentences for coding. After annotation of data and training alternative one-versus-others classifiers, a random forest-based approach achieved F1 scores from 66% (Other, dataset2) to 90% (Medical, dataset1) on the primary information types. 136 expressions of need were used to generate queries to indexed education materials. Upon examination of the best two pages retrieved for each query, 12% (17/136) of queries were found to have relevant content by all coders, and 33% (45/136) were judged to have relevant content by at least one. Conclusions: Text from online health forums can be analyzed effectively using automated methods. Our analysis confirms that breast cancer survivors have many information needs that are not covered by the written documents they typically receive, as our results suggest that at most a third of breast cancer survivors’ questions would be addressed by the materials currently provided to them. %M 29764801 %R 10.2196/cancer.9050 %U http://cancer.jmir.org/2018/1/e10/ %U https://doi.org/10.2196/cancer.9050 %U http://www.ncbi.nlm.nih.gov/pubmed/29764801 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 6 %N 3 %P e67 %T Monitoring Energy Balance in Breast Cancer Survivors Using a Mobile App: Reliability Study %A Lozano-Lozano,Mario %A Galiano-Castillo,Noelia %A Martín-Martín,Lydia %A Pace-Bedetti,Nicolás %A Fernández-Lao,Carolina %A Arroyo-Morales,Manuel %A Cantarero-Villanueva,Irene %+ Department of Physical Therapy, University of Granada, Avenida de la Ilustración, 60, Granada, 18016, Spain, 34 958248765, marroyo@ugr.es %K telemedicine %K breast neoplasms %K survivors %K life style %K exercise %K diet %K mhealth %D 2018 %7 27.03.2018 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: The majority of breast cancer survivors do not meet recommendations in terms of diet and physical activity. To address this problem, we developed a mobile health (mHealth) app for assessing and monitoring healthy lifestyles in breast cancer survivors, called the Energy Balance on Cancer (BENECA) mHealth system. The BENECA mHealth system is a novel and interactive mHealth app, which allows breast cancer survivors to engage themselves in their energy balance monitoring. BENECA was designed to facilitate adherence to healthy lifestyles in an easy and intuitive way. Objective: The objective of the study was to assess the concurrent validity and test-retest reliability between the BENECA mHealth system and the gold standard assessment methods for diet and physical activity. Methods: A reliability study was conducted with 20 breast cancer survivors. In the study, tri-axial accelerometers (ActiGraphGT3X+) were used as gold standard for 8 consecutive days, in addition to 2, 24-hour dietary recalls, 4 dietary records, and sociodemographic questionnaires. Two-way random effect intraclass correlation coefficients, a linear regression-analysis, and a Passing-Bablok regression were calculated. Results: The reliability estimates were very high for all variables (alpha≥.90). The lowest reliability was found in fruit and vegetable intakes (alpha=.94). The reliability between the accelerometer and the dietary assessment instruments against the BENECA system was very high (intraclass correlation coefficient=.90). We found a mean match rate of 93.51% between instruments and a mean phantom rate of 3.35%. The Passing-Bablok regression analysis did not show considerable bias in fat percentage, portions of fruits and vegetables, or minutes of moderate to vigorous physical activity. Conclusions: The BENECA mHealth app could be a new tool to measure energy balance in breast cancer survivors in a reliable and simple way. Our results support the use of this technology to not only to encourage changes in breast cancer survivors' lifestyles, but also to remotely monitor energy balance. Trial Registration: ClinicalTrials.gov NCT02817724; https://clinicaltrials.gov/ct2/show/NCT02817724 (Archived by WebCite at http://www.webcitation.org/6xVY1buCc) %M 29588273 %R 10.2196/mhealth.9669 %U http://mhealth.jmir.org/2018/3/e67/ %U https://doi.org/10.2196/mhealth.9669 %U http://www.ncbi.nlm.nih.gov/pubmed/29588273 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 7 %N 2 %P e51 %T Enhancing Survivorship Care Planning for Patients With Localized Prostate Cancer Using a Couple-Focused mHealth Symptom Self-Management Program: Protocol for a Feasibility Study %A Song,Lixin %A Dunlap,Kaitlyn L %A Tan,Xianming %A Chen,Ronald C %A Nielsen,Matthew E %A Rabenberg,Rebecca L %A Asafu-Adjei,Josephine K %A Koontz,Bridget F %A Birken,Sarah A %A Northouse,Laurel L %A Mayer,Deborah K %+ School of Nursing, University of North Carolina, Carrington Hall, Chapel Hill, NC, 27599, United States, 1 9199663612, lsong@unc.edu %K survivorship %K prostate cancer %K symptom, randomized trial %K mHealth %K caregiver %K Patient Reported Outcome Measures %D 2018 %7 26.02.2018 %9 Protocol %J JMIR Res Protoc %G English %X Background: This project explores a new model of care that enhances survivorship care planning and promotes health for men with localized prostate cancer transitioning to posttreatment self-management. Survivorship care planning is important for patients with prostate cancer because of its high incidence rate in the United States, the frequent occurrence of treatment-related side effects, and reduced quality of life (QOL) for both men and their partners. A key component of comprehensive survivorship care planning is survivorship care plans (SCPs), documents that summarize cancer diagnosis, treatment, and plans for follow-up care. However, research concerning the effectiveness of SCPs on patient outcomes or health service use has thus far been inconclusive. SCPs that are tailored to individual patients’ needs for information and care may improve effectiveness. Objective: This study aims to examine the feasibility of an enhanced survivorship care plan (ESCP) that integrates a symptom self-management mHealth program called Prostate Cancer Education and Resources for Couples (PERC) into the existing standardized SCP. The specific aims are to (1) examine the feasibility of delivering ESCPs and (2) to estimate the magnitude of benefit of ESCPs. Methods: We will use a two-group randomized controlled pretest-posttest design and collect data at baseline (T1) and 4 months later (T2) among 50 patients completing initial treatment for localized prostate cancer and their partners. First, we will assess the feasibility of ESCP by recruitment, enrollment, and retention rates; program satisfaction with the ESCP; and perceived ease of use of the ESCP. To achieve the secondary aim, we will compare the ESCP users with the standardized SCP users and assess their primary outcomes of QOL (overall, physical, emotional, and social QOL); secondary outcomes (reduction in negative appraisals and improvement in self-efficacy, social support, and health behaviors to manage symptoms); and number of visits to posttreatment care services between T1 and T2. We will assess the primary and secondary outcomes using measurements with sound psychometrical properties. We will use a qualitative and quantitative mixed methods approach to achieve the research aims. Results: This project is ongoing and will be completed by the end of 2018. Conclusions: The results from this study will help design a definitive randomized trial to test the efficacy of the ESCPs, a potentially scalable program, to enhance supportive care for prostate cancer patients and their families. %M 29483070 %R 10.2196/resprot.9118 %U http://www.researchprotocols.org/2018/2/e51/ %U https://doi.org/10.2196/resprot.9118 %U http://www.ncbi.nlm.nih.gov/pubmed/29483070 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 7 %N 2 %P e27 %T Increasing Physical Activity Amongst Overweight and Obese Cancer Survivors Using an Alexa-Based Intelligent Agent for Patient Coaching: Protocol for the Physical Activity by Technology Help (PATH) Trial %A Hassoon,Ahmed %A Schrack,Jennifer %A Naiman,Daniel %A Lansey,Dina %A Baig,Yasmin %A Stearns,Vered %A Celentano,David %A Martin,Seth %A Appel,Lawrence %+ Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Johns Hopkins University, 615 N Wolfe Street, E6035, Baltimore, MD, 21205, United States, 1 443 287 2775, ahassoo1@jhu.edu %D 2018 %7 12.02.2018 %9 Protocol %J JMIR Res Protoc %G English %X Background: Physical activity has established health benefits, but motivation and adherence remain challenging. Objective: We designed and launched a three-arm randomized trial to test artificial intelligence technology solutions to increase daily physical activity in cancer survivors. Methods: A single-center, three-arm randomized clinical trial with an allocation ration of 1:1:1: (A) control, in which participants are provided written materials about the benefits of physical activity; (B) text intervention, where participants receive daily motivation from a fully automated, data-driven algorithmic text message via mobile phone (Coachtext); and (C) Voice Assist intervention, where participants are provided with an in-home on demand autonomous Intelligent Agent using data driven Interactive Digital Voice Assist on the Amazon Alexa/Echo (MyCoach). Results: The study runs for 5 weeks: a one-week run-in to establish baseline, followed by 4 weeks of intervention. Data for study outcomes is collected automatically through a wearable sensor, and data are transferred in real-time to the study server. The recruitment goal is 42 participants, 14 in each arm. Electronic health records are used to prescreen candidates, with 39 participants recruited to date. Discussion: This study aims to investigate the effects of different types of intelligent technology solutions on promoting physical activity in cancer survivors. This innovative approach can easily be expanded and customized to other interventions. Early lessons from our initial participants are helping us develop additional advanced solutions to improve health outcomes. Trial Registration: Retrospectively registered on July 10, 2017 at ClinicalTrials.gov: NCT03212079; https://clinicaltrials.gov/ct2/show/NCT03212079 (Archived by WebCite at http://www.webcitation.org/6wgvqjTji) %M 29434016 %R 10.2196/resprot.9096 %U https://www.researchprotocols.org/2018/2/e27/ %U https://doi.org/10.2196/resprot.9096 %U http://www.ncbi.nlm.nih.gov/pubmed/29434016 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 7 %N 1 %P e14 %T Activating Technology for Connected Health in Cancer: Protocol for a Research and Training Program %A Mountford,Nicola %A Dorronzoro Zubiete,Enrique %A Kessie,Threase %A Garcia-Zapirain,Begonya %A Nuño-Solinís,Roberto %A Coyle,David %A Munksgaard,Kristin B %A Fernandez-Luque,Luis %A Rivera Romero,Octavio %A Mora Fernandez,Matilde %A Valero Jimenez,Pedro %A Daly,Ailish %A Whelan,Ruth %A Caulfield,Brian %+ Insight Centre, University College Dublin, 3rd Floor, Science Centre East, Belfield, Dublin, 4, Ireland, 353 17162526, nicola.mountford@ucd.ie %K eHealth %K mHealth %K consumer health informatics %K cancer %K cancer rehabilitation %D 2018 %7 24.01.2018 %9 Protocol %J JMIR Res Protoc %G English %X Background: As cancer survival rates increase, the challenge of ensuring that cancer survivors reclaim their quality of life (QoL) becomes more important. This paper outlines the research element of a research and training program that is designed to do just that. Objective: Bridging sectors, disciplines, and geographies, it brings together eight PhD projects and students from across Europe to identify the underlying barriers, test different technology-enabled rehabilitative approaches, propose a model to optimize the patient pathways, and examine the business models that might underpin a sustainable approach to cancer survivor reintegration using technology. Methods: The program, funded under the European Union's Horizon 2020 research and innovation program under the Marie Sklodowska-Curie grant agreement No 722012, includes deep disciplinary PhD projects, intersectoral and international secondments, interdisciplinary plenary training schools, and virtual subject-specific education modules. Results: The 8 students have now been recruited and are at the early stages of their projects. Conclusions: CATCH will provide a comprehensive training and research program by embracing all key elements—technical, social, and economic sciences—required to produce researchers and project outcomes that are capable of meeting existing and future needs in cancer rehabilitation. %M 29367184 %R 10.2196/resprot.8900 %U http://www.researchprotocols.org/2018/1/e14/ %U https://doi.org/10.2196/resprot.8900 %U http://www.ncbi.nlm.nih.gov/pubmed/29367184 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 4 %N 1 %P e1 %T Internet-Based Group Intervention for Ovarian Cancer Survivors: Feasibility and Preliminary Results %A Kinner,Ellen M %A Armer,Jessica S %A McGregor,Bonnie A %A Duffecy,Jennifer %A Leighton,Susan %A Corden,Marya E %A Gauthier Mullady,Janine %A Penedo,Frank J %A Lutgendorf,Susan K %+ Department of Psychological & Brain Sciences, University of Iowa, W322 Seashore Hall, Iowa City, IA, 52242, United States, 1 319 335 2432, susan-lutgendorf@uiowa.edu %K ovarian cancer %K quality of life %K feasibility studies %K eHealth %K psychological stress %D 2018 %7 15.01.2018 %9 Original Paper %J JMIR Cancer %G English %X Background: Development of psychosocial group interventions for ovarian cancer survivors has been limited. Drawing from elements of cognitive-behavioral stress management (CBSM), mindfulness-based stress reduction (MBSR), and acceptance and commitment therapy (ACT), we developed and conducted preliminary testing of an Internet-based group intervention tailored specifically to meet the needs of ovarian cancer survivors. The Internet-based platform facilitated home delivery of the psychosocial intervention to a group of cancer survivors for whom attending face-to-face programs could be difficult given their physical limitations and the small number of ovarian cancer survivors at any one treatment site. Objective: The aim of this study was to develop, optimize, and assess the usability, acceptability, feasibility, and preliminary intended effects of an Internet-based group stress management intervention for ovarian cancer survivors delivered via a tablet or laptop. Methods: In total, 9 ovarian cancer survivors provided feedback during usability testing. Subsequently, 19 survivors participated in 5 waves of field testing of the 10-week group intervention led by 2 psychologists. The group met weekly for 2 hours via an Internet-based videoconference platform. Structured interviews and weekly evaluations were used to elicit feedback on the website and intervention content. Before and after the intervention, measures of mood, quality of life (QOL), perceived stress, sleep, and social support were administered. Paired t tests were used to examine changes in psychosocial measures over time. Results: Usability results indicated that participants (n=9) performed basic tablet functions quickly with no errors and performed website functions easily with a low frequency of errors. In the field trial (n=19), across 5 groups, the 10-week intervention was well attended. Perceived stress (P=.03) and ovarian cancer-specific QOL (P=.01) both improved significantly during the course of the intervention. Trends toward decreased distress (P=.18) and greater physical (P=.05) and functional well-being (P=.06) were also observed. Qualitative interviews revealed that the most common obstacles participants experienced were technical issues and the time commitment for practicing the techniques taught in the program. Participants reported that the intervention helped them to overcome a sense of isolation and that they appreciated the ability to participate at home. Conclusions: An Internet-based group intervention tailored specifically for ovarian cancer survivors is highly usable and acceptable with moderate levels of feasibility. Preliminary psychosocial outcomes indicate decreases in perceived stress and improvements in ovarian cancer-specific QOL following the intervention. A randomized clinical trial is needed to demonstrate the efficacy of this promising intervention for ovarian cancer survivors. %M 29335233 %R 10.2196/cancer.8430 %U http://cancer.jmir.org/2018/1/e1/ %U https://doi.org/10.2196/cancer.8430 %U http://www.ncbi.nlm.nih.gov/pubmed/29335233 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 7 %N 1 %P e2 %T Research- and Practice-Based Nutrition Education and Cooking Workshops in Pediatric Oncology: Protocol for Implementation and Development of Curriculum %A Chaput,Cynthia %A Beaulieu-Gagnon,Sabrina %A Bélanger,Véronique %A Drouin,Simon %A Bertout,Laurence %A Lafrance,Lucie %A Olivier,Cinthia %A Robitaille,Marthe %A Laverdière,Caroline %A Sinnett,Daniel %A Marquis,Marie %A Marcil,Valérie %+ Research Center of Sainte-Justine University Health Center, 3175 Côte Ste-Catherine room 4.17.006, Montreal, QC, H3T 1C5, Canada, 1 514 345 4931 ext 3272, valerie.marcil@umontreal.ca %K child %K diet %K education %K neoplasms %K hospitals %K methods %D 2018 %7 09.01.2018 %9 Protocol %J JMIR Res Protoc %G English %X Background: Progresses in childhood cancer treatment, diagnosis, and management have resulted in childhood cancer survival rates of over 80%. However, this therapeutic success comes with a heavy price: two-thirds of childhood cancer survivors will be affected by further complications, including cardiovascular and metabolic diseases. Adequate nutrition during cancer treatment is essential to ensure the child’s optimal development, improve tolerance to treatments, and can contribute to lower the risk of developing cardiometabolic diseases. Side effects of cancer treatments can negatively impact children’s nutritional intake and eating behaviors. Involving the families of childhood cancer patients in educational workshops could be a promising avenue to promote healthy eating during and after cancer treatment. Objective: The objectives of this study were to develop, validate, and implement a family-based nutrition education and cooking workshop curriculum in a pediatric oncology setting that addresses the nutritional issues encountered during treatments while promoting the adoption of healthy eating habits for the prevention of long-term cardiometabolic effects. Methods: The workshops were developed and validated following an 8-step iterative process, including a review of the literature and consultations with a steering committee. An evaluation tool was also developed. A nonrandomized study protocol was elaborated to implement the workshops and measure their impact. The themes of the 6 research- and practice-based lessons are as follows: meal fortification during cancer treatment, changes in taste during cancer therapy and their impact on children, adapting diet to eating-related side effects of treatments, nutritional support during cancer treatment, Mediterranean diet and health, and planning quick and economic meals. The validation process included consultations with the institution’s clinical nutrition professionals. Self-administered post questionnaires were developed according to the content of each workshop to measure short-term outcomes, namely, participants’ perception of knowledge acquisition, behavioral intention, and satisfaction. Medium-term outcomes that will be evaluated are participants’ anthropometric profile, quality of the diet, and circulating biomarkers of metabolic health. Results: The project was funded in 2016 and enrollment will be completed in 2021. Data analysis is currently under way and the first results are expected to be submitted for publication in 2019. Conclusions: This research- and practice-based nutrition education and cooking demonstration curriculum could be a valuable complement to a multidisciplinary lifestyle intervention for the prevention of long-term cardiometabolic complications in childhood cancer. %M 29317383 %R 10.2196/resprot.8302 %U http://www.researchprotocols.org/2018/1/e2/ %U https://doi.org/10.2196/resprot.8302 %U http://www.ncbi.nlm.nih.gov/pubmed/29317383 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 6 %N 12 %P e238 %T Exploring Advance Care Planning in Taiwanese Indigenous Cancer Survivors: Proposal for a Pilot Case-Control Study %A Li,In-Fun %A Hsiung,Yvonne %+ Department of Nursing, Mackay Medical College, No 46, Sec 3, Zhongzheng Rd, Sanzhi District, New Taipei City, 252, Taiwan, 886 226360303 ext 1318, yvonnebear@mmc.edu.tw %K Taiwanese indigenous peoples %K advance care planning %K cancer survivors %D 2017 %7 21.12.2017 %9 Proposal %J JMIR Res Protoc %G English %X Background: Research on Taiwanese indigenous cancer survivors’ end-of-life (EOL) planning is still in its infancy, despite recent government and societal efforts to promote quality EOL care. Previous national studies in Taiwan have characterized indigenous peoples as a socioeconomically disadvantaged minority group. Compared with their mainstream cohorts, these remote residents are vulnerable to multiple social welfare problems, receiving and accessing little in the way of health care in rural mountain areas. Although advance care planning (ACP) has been shown to help patients achieve better quality of dying, very little is known about indigenous intentions for such interventions. Relevant studies are scarce in Taiwan, and programs for cancer survivors have been based almost entirely on nonindigenous populations. Since there has been no research on Taiwanese indigenous people’s aims for ACP, there is a need to understand the impact of survivorship on ACP readiness among those who are currently living with, through, and beyond cancer. Objective: We aim to identify differences in ACP intent and readiness among indigenous peoples with and without cancer diagnoses. We will identify the impact of factors such as tribal cultural beliefs and quality of life along with cancer exposure on the outcome of ACP readiness differences. In particular, we will examine the effects of ACP knowledge from previous ACP participation, EOL care experiences, and personal registry status of Do-Not-Resuscitate (DNR) in the national database. A secondary objective is to describe indigenous people’s intent to participate in public education related to EOL planning. Methods: A descriptive case-control study (N=200) is proposed where controls are matched to cases’ attributes of age, gender, and cancer diagnosis. This matching analysis allows assessment of cancer as an exposure while taking into account age and gender as confounding variables. We are currently in the process of training personnel and extracting clinical and administrative information from the health care system of collaborating facilities. This carefully designed study provides a unique opportunity because for the first time in Taiwan, cancer survivorship and ACP readiness for EOL planning will be examined among difficult-to-reach indigenous peoples. Results: We plan to complete this study in approximately 3 years. Conclusions: In this study, we expect to survey palliative care usage in the remote indigenous group, understand factors that influence ACP readiness, and later foster culturally appropriate ACP public participation and policies in order to facilitate collaboration between cancer health care providers in various Taiwanese subcultures. %M 29269340 %R 10.2196/resprot.5428 %U http://www.researchprotocols.org/2017/12/e238/ %U https://doi.org/10.2196/resprot.5428 %U http://www.ncbi.nlm.nih.gov/pubmed/29269340 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 6 %N 10 %P e197 %T Adoption, Acceptability, and Effectiveness of a Mobile Health App for Personalized Prostate Cancer Survivorship Care: Protocol for a Realist Case Study of the Ned App %A Pham,Quynh %A Cafazzo,Joseph A %A Feifer,Andrew %+ Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Health Sciences Building, 4th Floor, 155 College St, Toronto, ON, M5T 3M6, Canada, 1 647 667 2573, q.pham@mail.utoronto.ca %K prostate-specific antigen %K prostate cancer survivorship %K prostate cancer %K patient-centered care %K mobile health %K mHealth %K telemedicine %K mobile health app %K realist evaluation %K case study %D 2017 %7 12.10.2017 %9 Protocol %J JMIR Res Protoc %G English %X Background: By 2030, prostate cancer will be the most commonly diagnosed cancer in North America. To mitigate this impending challenge, comprehensive support mechanisms for disease- and treatment-specific changes in health and well-being must be proactively designed and thoughtfully implemented for streamlined survivorship care. mHealth apps have been lauded as a promising complement to current outpatient treatment and monitoring strategies, but have not yet been widely used to support prostate cancer survivorship needs. A realist evaluation is needed to examine the impact of such apps on the prostate cancer survivorship experience. Objective: We seek to gain an understanding of how an mHealth app for prostate cancer survivorship care called Ned (No Evident Disease) is adopted and accepted by patients, caregivers, and clinicians. We also aim to determine the effect of Ned on health-related quality of life, satisfaction with cancer care, unmet needs, self-efficacy, and prostate cancer-related levels of anxiety. Methods: The Ned case study is a 12-month mixed-methods embedded single-case study with a nested within-group pre-post comparison of health outcomes. We will give 400 patients, 200 caregivers, and 10 clinicians access to Ned. Participants will be asked to complete study assessments at baseline, 2 months, 6 months, and 12 months. We will conduct 30 semistructured qualitative interviews with patients (n=20) and their caregivers (n=10) poststudy to gain insight into their experience with the app. Results: We recruited our first survivor in October 2017 and anticipate completing this study by May 2019. Conclusions: This will, to our knowledge, be the first realist case study to evaluate an app for prostate cancer survivorship care. Prostate cancer survivors are set to increase in number and longevity, heightening the need for integrated survivorship solutions to provide them with optimal and durable outcomes. The knowledge gained from this study will comprehensively inform how and why Ned works, for whom, and in what circumstances. Understanding the impact of digital health interventions such as Ned on how survivors care for themselves is critical to realizing patient-centered care. %M 29025699 %R 10.2196/resprot.8051 %U http://www.researchprotocols.org/2017/10/e197/ %U https://doi.org/10.2196/resprot.8051 %U http://www.ncbi.nlm.nih.gov/pubmed/29025699 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 3 %N 2 %P e14 %T A Mobile Breast Cancer Survivorship Care App: Pilot Study %A Baseman,Janet %A Revere,Debra %A Baldwin,Laura-Mae %+ Department of Epidemiology, University of Washington, 1105 NE 45th Street Suite 400, Seattle, WA, 98105, United States, 1 206 616 1495, jbaseman@uw.edu %K breast neoplasms %K data collection %K feasibility studies %K mobile apps %K survivors %K telemedicine %D 2017 %7 26.09.2017 %9 Original Paper %J JMIR Cancer %G English %X Background: Cancer survivors living in rural areas experience unique challenges due to additional burdens, such as travel and limited access to specialists. Rural survivors of breast cancer have reported poorer outcomes, poorer mental health and physical functioning, and lower-than-average quality of life compared to urban survivors. Objective: To explore the feasibility and acceptability of developing a mobile health survivorship care app to facilitate care coordination; support medical, psychosocial, and practical needs; and improve survivors' long-term health outcomes. Methods: An interactive prototype app, SmartSurvivor, was developed that included recommended survivorship care plan components. The prototype's feasibility and acceptability were tested by a sample of breast cancer survivors (n=6), primary care providers (n=4), and an oncologist (n=1). Results: Overall, both survivors and providers felt that SmartSurvivor was a potentially valuable tool to support long-term survivorship care plan objectives. Portability, accessibility, and having one place for all contact, treatment, symptom tracking, and medication summaries was highly valued. Conclusions: Our pilot study indicates that SmartSurvivor is a feasible and acceptable approach to meeting survivorship care objectives and the needs of both breast cancer survivors and their health care providers. Exploration of mobile health options for supporting survivorship care plan needs is a promising area of research. %M 28951383 %R 10.2196/cancer.8192 %U http://cancer.jmir.org/2017/2/e14/ %U https://doi.org/10.2196/cancer.8192 %U http://www.ncbi.nlm.nih.gov/pubmed/28951383 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 3 %N 2 %P e13 %T A Lifestyle Intervention via Email in Minority Breast Cancer Survivors: Randomized Parallel-Group Feasibility Study %A Paxton,Raheem J %A Hajek,Richard %A Newcomb,Patricia %A Dobhal,Megha %A Borra,Sujana %A Taylor,Wendell C %A Parra-Medina,Deborah %A Chang,Shine %A Courneya,Kerry S %A Block,Gladys %A Block,Torin %A Jones,Lovell A %+ Department of Community Medicine and Population Health, The University of Alabama, 1132 Northeast Medical Bldg, Tuscaloosa, AL, 35401, United States, 1 205 348 6857, rpaxton@ua.edu %K breast neoplasm %K African Americans %K diet %K feasibility study %K physical activity %K posture %K program evaluation %K Internet %K computer tailoring %K email %D 2017 %7 21.09.2017 %9 Original Paper %J JMIR Cancer %G English %X Background: Our data have indicated that minority breast cancer survivors are receptive to participating in lifestyle interventions delivered via email or the Web, yet few Web-based studies exist in this population. Objective: The aim of this study was to examine the feasibility and preliminary results of an email-delivered diet and activity intervention program, “A Lifestyle Intervention Via Email (ALIVE),” delivered to a sample of racial and ethnic minority breast cancer survivors. Methods: Survivors (mean age: 52 years, 83% [59/71] African American) were recruited and randomized to receive either the ALIVE program’s 3-month physical activity track or its 3-month dietary track. The fully automated system provided tools for self-monitoring and goal setting, tailored content, and automated phone calls. Descriptive statistics and mixed-effects models were computed to examine the outcomes of the study. Results: Upon completion, 44 of 71 survivors completed the study. Our “intention-to-treat” analysis revealed that participants in the physical activity track made greater improvements in moderate to vigorous activity than those in the dietary track (+97 vs. +49 min/week, P<.001). Similarly, reductions in total sedentary time among those in the physical activity track (−304 vs. −59 min/week, P<.001) was nearly 5 times greater than that for participants in the dietary track. Our completers case analysis indicated that participants in the dietary track made improvements in the intake of fiber (+4.4 g/day), fruits and vegetables (+1.0 cup equivalents/day), and reductions in saturated fat (−2.3 g/day) and trans fat (−0.3 g/day) (all P<.05). However, these improvements in dietary intake were not significantly different from the changes observed by participants in the physical activity track (all P>.05). Process evaluation data indicated that most survivors would recommend ALIVE to other cancer survivors (97%), were satisfied with ALIVE (82%), and felt that ALIVE was effective (73%). However, survivors expressed concerns about the functionality of the interactive emails. Conclusions: ALIVE appears to be feasible for racial and ethnic minority cancer survivors and showed promising results for larger implementation. Although survivors favored the educational content, a mobile phone app and interactive emails that work on multiple email domains may help to boost adherence rates and to improve satisfaction with the Web-based platform. Trial Registration: ClinicalTrials.gov NCT02722850; https://clinicaltrials.gov/ct2/show/NCT02722850 (Archived by WebCite at http://www.webcitation.org/6tHN9VsPh) %M 28935620 %R 10.2196/cancer.7495 %U http://cancer.jmir.org/2017/2/e13/ %U https://doi.org/10.2196/cancer.7495 %U http://www.ncbi.nlm.nih.gov/pubmed/28935620 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 6 %N 8 %P e165 %T Smartphone-Enabled Health Coaching Intervention (iMOVE) to Promote Long-Term Maintenance of Physical Activity in Breast Cancer Survivors: Protocol for a Feasibility Pilot Randomized Controlled Trial %A Ritvo,Paul %A Obadia,Maya %A Santa Mina,Daniel %A Alibhai,Shabbir %A Sabiston,Catherine %A Oh,Paul %A Campbell,Kristin %A McCready,David %A Auger,Leslie %A Jones,Jennifer Michelle %+ Cancer Rehabilitation and Survivorship Program, Princess Margaret Cancer Centre, University Health Network, PMB-B-148, 200 Elizabeth St, Toronto, ON, M5G 2C4, Canada, 1 416 581 8603, jennifer.jones@uhn.ca %K breast neoplasm %K exercise %K health coaching %K RCT %K telehealth %D 2017 %7 24.08.2017 %9 Protocol %J JMIR Res Protoc %G English %X Background: Although physical activity has been shown to contribute to long-term disease control and health in breast cancer survivors, a majority of breast cancer survivors do not meet physical activity guidelines. Past research has focused on promoting physical activity components for short-term breast cancer survivor benefits, but insufficient attention has been devoted to long-term outcomes and sustained exercise adherence. We are assessing a health coach intervention (iMOVE) that uses mobile technology to increase and sustain physical activity maintenance in initially inactive breast cancer survivors. Objective: This pilot randomized controlled trial (RCT) is an initial step in evaluating the iMOVE intervention and will inform development of a full-scale pragmatic RCT. Methods: We will enroll 107 physically inactive breast cancer survivors and randomly assign them to intervention or control groups at the University Health Network, a tertiary cancer care center in Toronto, Canada. Participants will be women (age 18 to 74 years) stratified by age (55 years and older/younger than 55 years) and adjuvant hormone therapy (AHT) exposure (AHT vs no AHT) following breast cancer treatment with no metastases or recurrence who report less than 60 minutes of preplanned physical activity per week. Both intervention and control groups receive the 12-week physical activity program with weekly group sessions and an individualized, progressive, home-based exercise program. The intervention group will additionally receive (1) 10 telephone-based health coaching sessions, (2) smartphone with data plan, if needed, (3) supportive health tracking software (Connected Wellness, NexJ Health Inc), and (4) a wearable step-counting device linked to a smartphone program. Results: We will be assessing recruitment rates; acceptability reflected in selective, semistructured interviews; and enrollment, retention, and adherence quantitative intervention markers as pilot outcome measures. The primary clinical outcome will be directly measured peak oxygen consumption. Secondary clinical outcomes include health-related quality of life and anthropometric measures. All outcome measures are administered at baseline, after exercise program (month 3), and 6 months after program (month 9). Conclusions: This pilot RCT will inform full-scale RCT planning. We will assess pilot procedures and interventions and collect preliminary effect estimates. Trial Registration: ClinicalTrials.gov NCT02620735; https://clinicaltrials.gov/ct2/show/NCT02620735 (Archived by WebCite at https://clinicaltrials.gov/ct2/show/NCT02620735) %M 28838886 %R 10.2196/resprot.6615 %U http://www.researchprotocols.org/2017/8/e165/ %U https://doi.org/10.2196/resprot.6615 %U http://www.ncbi.nlm.nih.gov/pubmed/28838886 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 8 %P e298 %T A Web-Based and Print-Based Computer-Tailored Physical Activity Intervention for Prostate and Colorectal Cancer Survivors: A Comparison of User Characteristics and Intervention Use %A Golsteijn,Rianne Henrica Johanna %A Bolman,Catherine %A Peels,Denise Astrid %A Volders,Esmee %A de Vries,Hein %A Lechner,Lilian %+ Department of Psychology and Educational Sciences, Open University of the Netherlands, PO Box 2960, Heerlen, 6401 DL, Netherlands, 31 455762539, rianne.golsteijn@ou.nl %K eHealth %K web-based intervention %K print-delivered intervention %K computer tailoring %K intervention usage %K physical activity %K prostate cancer %K colorectal cancer %K cancer survivorship %D 2017 %7 23.08.2017 %9 Original Paper %J J Med Internet Res %G English %X Background: Physical activity (PA) is beneficial in improving negative physical and psychological effects of cancer. The rapidly increasing number of cancer survivors, resulting from aging and improved cancer care, emphasizes the importance to develop and provide low cost, easy accessible PA programs. Such programs could be provided through the Internet, but that could result in the exclusion of cancer survivors not familiar with the Internet. Therefore, we developed a computer-tailored PA intervention for prostate and colorectal cancer survivors in which both Web-based and print materials are provided, and participants can choose their own preferred delivery mode. Objective: The aim of this study was to assess participants’ characteristics related to delivery mode and use of intervention materials. Methods: We studied characteristics of participants using Web-based and printed intervention materials in a randomized controlled trial (RCT). Prostate and colorectal cancer survivors recruited from hospitals were randomized to OncoActive (computer-tailored PA intervention) or a usual-care control group. OncoActive participants received both Web-based and printed materials. Participants were classified into initial print- or Web-based participants based on their preferred mode of completion of the first questionnaire, which was needed for the computer-tailored PA advice. Intervention material use during the remainder of the intervention was compared for initial print- or Web-based participants. Additionally, participants were classified into those using only print materials and those using Web-based materials. Differences in participant characteristics and intervention material use were studied through analysis of variance (ANOVAs), chi-square tests, and logistic regressions. Results: The majority of the participants in the intervention group were classified as initial Web-based participants (170/249, 68.3%), and 84.9% (191/249) used Web-based intervention materials. Dropout was low (15/249, 6.0%) and differed between initial Web-based (4/170, 2.4%) and print-based (11/79, 14%) participants. Participants were less likely to start Web-based with higher age (odds ratio [OR]=0.93), longer time since last treatment (OR=0.87), and higher fatigue (OR=0.96), and more likely with higher education (OR=4.08) and having completed treatments (OR=5.58). Those who were older (OR=0.93) and post treatment for a longer time (OR=0.86) were less likely to use Web-based intervention materials. Initial print-based participants predominantly used print-based materials, whereas initial Web-based participants used both print- and Web-based materials. Conclusions: To our knowledge, this is one of the first studies that assessed participant characteristics related to delivery mode in an intervention in which participants had a free choice of delivery modes. Use of print-based materials among the initial Web-based participants was substantial, indicating the importance of print-based materials. According to our findings, it may be important to offer Web- and print-based materials alongside each other. Providing Web-based materials only may exclude older, less educated, more fatigued, or currently treated participants; these groups are especially more vulnerable and could benefit most from PA interventions. %M 28835353 %R 10.2196/jmir.7838 %U http://www.jmir.org/2017/8/e298/ %U https://doi.org/10.2196/jmir.7838 %U http://www.ncbi.nlm.nih.gov/pubmed/28835353 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 3 %N 2 %P e8 %T Cancer-Related Fatigue in Post-Treatment Cancer Survivors: Theory-Based Development of a Web-Based Intervention %A Corbett,Teresa %A Walsh,Jane C %A Groarke,AnnMarie %A Moss-Morris,Rona %A Morrissey,Eimear %A McGuire,Brian E %+ Centre for Clinical and Community Applications of Health Psychology (CCCAHP), School of Psychology, Faculty of Social, Human and Mathematical Sciences, University of Southampton, Southampton, SO17 1BJ, United Kingdom, 44 238059 ext 7045, T.K.Corbett@soton.ac.uk %K cancer %K survivor %K design %K person-based approach %K theory %D 2017 %7 04.07.2017 %9 Original Paper %J JMIR Cancer %G English %X Background: Cancer-related fatigue (CrF) is the most common and disruptive symptom experienced by cancer survivors. We aimed to develop a theory-based, interactive Web-based intervention designed to facilitate self-management and enhance coping with CrF following cancer treatment. Objective: The aim of our study was to outline the rationale, decision-making processes, methods, and findings which led to the development of a Web-based intervention to be tested in a feasibility trial. This paper outlines the process and method of development of the intervention. Methods: An extensive review of the literature and qualitative research was conducted to establish a therapeutic approach for this intervention, based on theory. The psychological principles used in the development process are outlined, and we also clarify hypothesized causal mechanisms. We describe decision-making processes involved in the development of the content of the intervention, input from the target patient group and stakeholders, the design of the website features, and the initial user testing of the website. Results: The cocreation of the intervention with the experts and service users allowed the design team to ensure that an acceptable intervention was developed. This evidence-based Web-based program is the first intervention of its kind based on self-regulation model theory, with the primary aim of targeting the representations of fatigue and enhancing self-management of CrF, specifically. Conclusions: This research sought to integrate psychological theory, existing evidence of effective interventions, empirically derived principles of Web design, and the views of potential users into the systematic planning and design of the intervention of an easy-to-use website for cancer survivors. %M 28676465 %R 10.2196/cancer.6987 %U http://cancer.jmir.org/2017/2/e8/ %U https://doi.org/10.2196/cancer.6987 %U http://www.ncbi.nlm.nih.gov/pubmed/28676465 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 5 %P e161 %T Effects of Using Child Personas in the Development of a Digital Peer Support Service for Childhood Cancer Survivors %A Wärnestål,Pontus %A Svedberg,Petra %A Lindberg,Susanne %A Nygren,Jens M %+ School of Health and Welfare, Halmstad University, Box 823, Halmstad, 30118, Sweden, 46 35167863, jens.nygren@hh.se %K peer %K childhood %K cancer %K survivor %K participation %K user experience %K service design %D 2017 %7 18.05.2017 %9 Original Paper %J J Med Internet Res %G English %X Background: Peer support services have the potential to support children who survive cancer by handling the physical, mental, and social challenges associated with survival and return to everyday life. Involving the children themselves in the design process allows for adapting services to authentic user behaviors and goals. As there are several challenges that put critical requirements on a user-centered design process, we developed a design method based on personas adapted to the particular needs of children that promotes health and handles a sensitive design context. Objective: The purpose of this study was to evaluate the effects of using child personas in the development of a digital peer support service for childhood cancer survivors. Methods: The user group’s needs and behaviors were characterized based on cohort data and literature, focus group interviews with childhood cancer survivors (n=15, 8-12 years), stakeholder interviews with health care professionals and parents (n=13), user interviews, and observations. Data were interpreted and explained together with childhood cancer survivors (n=5) in three explorative design workshops and a validation workshop with children (n=7). Results: We present findings and insights on how to codesign child personas in the context of developing digital peer support services with childhood cancer survivors. The work resulted in three primary personas that model the behaviors, attitudes, and goals of three user archetypes tailored for developing health-promoting services in this particular use context. Additionally, we also report on the effects of using these personas in the design of a digital peer support service called Give Me a Break. Conclusions: By applying our progressive steps of data collection and analysis, we arrive at authentic child-personas that were successfully used to design and develop health-promoting services for children in vulnerable life stages. The child-personas serve as effective collaboration and communication aids for both internal and external purposes. %M 28526663 %R 10.2196/jmir.7175 %U http://www.jmir.org/2017/5/e161/ %U https://doi.org/10.2196/jmir.7175 %U http://www.ncbi.nlm.nih.gov/pubmed/28526663 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 4 %P e130 %T Analyzing and Predicting User Participations in Online Health Communities: A Social Support Perspective %A Wang,Xi %A Zhao,Kang %A Street,Nick %+ Department of Management Sciences, The University of Iowa, S224 PBB, Iowa City, IA, 52242, United States, 1 3193353831, kang-zhao@uiowa.edu %K social support %K machine learning %K community networks %K patient engagement %K prediction %D 2017 %7 24.04.2017 %9 Original Paper %J J Med Internet Res %G English %X Background: Online health communities (OHCs) have become a major source of social support for people with health problems. Members of OHCs interact online with similar peers to seek, receive, and provide different types of social support, such as informational support, emotional support, and companionship. As active participations in an OHC are beneficial to both the OHC and its users, it is important to understand factors related to users’ participations and predict user churn for user retention efforts. Objective: This study aimed to analyze OHC users’ Web-based interactions, reveal which types of social support activities are related to users’ participation, and predict whether and when a user will churn from the OHC. Methods: We collected a large-scale dataset from a popular OHC for cancer survivors. We used text mining techniques to decide what kinds of social support each post contained. We illustrated how we built text classifiers for 5 different social support categories: seeking informational support (SIS), providing informational support (PIS), seeking emotional support (SES), providing emotional support (PES), and companionship (COM). We conducted survival analysis to identify types of social support related to users’ continued participation. Using supervised machine learning methods, we developed a predictive model for user churn. Results: Users’ behaviors to PIS, SES, and COM had hazard ratios significantly lower than 1 (0.948, 0.972, and 0.919, respectively) and were indicative of continued participations in the OHC. The churn prediction model based on social support activities offers accurate predictions on whether and when a user will leave the OHC. Conclusions: Detecting different types of social support activities via text mining contributes to better understanding and prediction of users’ participations in an OHC. The outcome of this study can help the management and design of a sustainable OHC via more proactive and effective user retention strategies. %M 28438725 %R 10.2196/jmir.6834 %U http://www.jmir.org/2017/4/e130/ %U https://doi.org/10.2196/jmir.6834 %U http://www.ncbi.nlm.nih.gov/pubmed/28438725 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 3 %N 1 %P e4 %T An eHealth Intervention to Increase Physical Activity and Healthy Eating in Older Adult Cancer Survivors: Summative Evaluation Results %A Krebs,Paul %A Shtaynberger,Jonathan %A McCabe,Mary %A Iocolano,Michelle %A Williams,Katie %A Shuk,Elyse %A Ostroff,Jamie S %+ Department of Population Health, New York University School of Medicine, Translational Research Building, 7th Floor, 227 E 30th St, New York, NY, 10016, United States, 1 646 501 2637, Paul.Krebs@nyumc.org %K survivors %K diet %K food and nutrition %K breast neoplasms %K prostatic neoplasms %K eHealth %D 2017 %7 01.03.2017 %9 Original Paper %J JMIR Cancer %G English %X Background: A healthy lifestyle is associated with improved quality of life among cancer survivors, yet adherence to health behavior recommendations is low. Objective: This pilot trial developed and tested the feasibility of a tailored eHealth program to increase fruit and vegetable consumption and physical activity among older, long-term cancer survivors. Methods: American Cancer Society (ACS) guidelines for cancer survivors were translated into an interactive, tailored health behavior program on the basis of Social Cognitive Theory. Patients (N=86) with a history of breast (n=83) or prostate cancer (n=3) and less than 5 years from active treatment were randomized 1:1 to receive either provider advice, brief counseling, and the eHealth program (intervention) or advice and counseling alone (control). Primary outcomes were self-reported fruit and vegetable intake and physical activity. Results: About half (52.7%, 86/163) of the eligible patients consented to participate. The most common refusal reasons were lack of perceived time for the study (32/163) and lack of interest in changing health behaviors (29/163). Furthermore, 72% (23/32) of the intervention group reported using the program and most would recommend it to others (56%, 14/25). Qualitative results indicated that the intervention was highly acceptable for survivors. For behavioral outcomes, the intervention group reported increased fruit and vegetable consumption. Self-reported physical activity declined in both groups. Conclusions: The brief intervention showed promising results for increasing fruit and vegetable intake. Results and participant feedback suggest that providing the intervention in a mobile format with greater frequency of contact and more indepth information would strengthen treatment effects. %M 28410171 %R 10.2196/cancer.6435 %U http://cancer.jmir.org/2017/1/e4/ %U https://doi.org/10.2196/cancer.6435 %U http://www.ncbi.nlm.nih.gov/pubmed/28410171 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 3 %N 1 %P e3 %T Adolescent and Young Adult Cancer Survivorship Educational Programming: A Qualitative Evaluation %A Vollmer Dahlke,Deborah %A Fair,Kayla %A Hong,Yan Alicia %A Kellstedt,Debra %A Ory,Marcia G %+ Texas A&M School of Public Health, Health Promotion and Community Health Sciences, Texas A&M University, 8402 Silver Mountain Cove, Austin, TX,, United States, 1 512 699 4493, Deborahvd@gmail.com %K cancer survivorship %K adolescent and young adult %K qualitative %K mixed methods %K evaluation %D 2017 %7 10.02.2017 %9 Original Paper %J JMIR Cancer %G English %X Background: This program evaluation considers the need for increased professional and patient education for adolescent and young adult (AYA) cancer survivorship. Due to the high incidence of late effects of cancer treatment among AYA cancer survivors, knowledge sharing and communications are needed throughout the transition from cancer care into community care. AYA survivors are likely to need developmentally appropriate psychosocial care as well as extensive follow-on surveillance by physicians who are educated and aware of the likely chronic conditions and late effects that may occur in these patients. Objective: The objective of this study was to evaluate the outcomes of the After Cancer Care Ends, Survivorship Starts for Adolescent and Young Adults (ACCESS AYA) programming. The intent of the ACCESS AYA program was to build health literacy around AYA survivorship issues and to stimulate improved communications between survivors and health care providers. This paper addresses the central research question of “How did the ACCESS AYA program increase health literacy, communications, and understanding among AYA survivors and providers?” Methods: The primarily qualitative evaluation included a brief introductory survey of participant awareness and effectiveness of the ACCESS AYA project serving as a recruitment tool. Survey respondents were invited to participate in in-depth interviews based on interview guides tailored to the different stakeholder groups. The evaluation used the Atlas Ti qualitative database and software for coding and key word analyses. Interrater reliability analyses were assessed using Cohen kappa analysis with Stata 12.1 (StataCorp LLC) software. Results: The key themes, which included survivor wellbeing, health care professional education, cancer advocates role and education, hospital and community-based resources, and the role of societal support, are presented in a concept map. The interrater reliability scores (ranging from 1 to minus 1) were .893 for first cycle coding and .784 for the second cycle. In the brief quantitative survey based on a scale of 1 to 5 with 5 as high, the 22 respondents rated their level of awareness of the project with a mean 3.2 (CI 3.02-3.45) and project effectiveness with a mean of 4 (CI 3.72-4.27). Conclusions: This study contributes to understanding of the ACCESS AYA survivor community in central Texas and the health care professionals and advocates who aid them in their efforts to a new normal life and wellbeing in their survivorship. The results of the evaluation highlight the need to continue to build both survivor and professional resources to address the unique impact of cancer on AYA cancer survivors. %M 28410172 %R 10.2196/cancer.5821 %U http://cancer.jmir.org/2017/1/e3/ %U https://doi.org/10.2196/cancer.5821 %U http://www.ncbi.nlm.nih.gov/pubmed/28410172 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 3 %N 1 %P e2 %T Parent and Health Care Provider Perceptions for Development of a Web-Based Weight Management Program for Survivors of Pediatric Acute Lymphoblastic Leukemia: A Mixed Methods Study %A Folta,Sara %A Chang,Winnie %A Hill,Rachel %A Kelly,Michael %A Meagher,Susan %A Bowman,W Paul %A Zhang,Fang Fang %+ Friedman School of Nutrition Science and Policy, Tufts University, 150 Harrison Ave, Boston, MA,, United States, 1 617 636 3423, sara.folta@tufts.edu %K weight management %K childhood cancer survivors %K mixed methods %D 2017 %7 09.02.2017 %9 Original Paper %J JMIR Cancer %G English %X Background: Survivors of pediatric acute lymphoblastic leukemia (ALL) may experience unhealthy weight gain during treatment, which has been associated with higher risk for chronic health issues. Objective: The purpose of this study was to obtain feedback on weight management in pediatric ALL survivors and on the content and implementation of a Web-based weight management program. Methods: Study participants included 54 parent survey respondents and 19 pediatric oncology professionals in 4 focus groups. Survey questions included report of child weight status and interest in participating in weight management programming at various time points. Pediatric oncology professionals were asked about the preferred topics and timing, as well as their role. Focus group data were analyzed by a multidisciplinary research team for common themes. Results: The mean age of survivors was 6.5 years. By parent report, 19% of children were overweight and 25% were obese. Preferred timing for weight management program participation was within 3 months of starting maintenance chemotherapy (23/53, 43%) or within 12 months after completion of all cancer treatments (18/53, 34%). Pediatric oncology professionals likewise considered the maintenance phase appropriate. They considered parenting to be an important topic to include and indicated that their most appropriate roles would be promotion and support. Conclusions: Parents and pediatric oncology professionals are interested in and supportive of early weight management in pediatric ALL survivors. Future research needs to identify strategies to integrate this into pediatric cancer care and to evaluate the feasibility and efficacy of these strategies. %M 28410182 %R 10.2196/cancer.6680 %U http://cancer.jmir.org/2017/1/e2/ %U https://doi.org/10.2196/cancer.6680 %U http://www.ncbi.nlm.nih.gov/pubmed/28410182 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 6 %N 2 %P e19 %T Involving Children With Cancer in Health Promotive Research: A Case Study Describing Why, What, and How %A Nygren,Jens M %A Lindberg,Susanne %A Wärnestål,Pontus %A Svedberg,Petra %+ School of Health and Welfare, Halmstad University, Box 823, Halmstad,, Sweden, 46 35 16 78 63, jens.nygren@hh.se %K children %K participation %K involvement %K research %D 2017 %7 07.02.2017 %9 Original Paper %J JMIR Res Protoc %G English %X Background: Participatory research approaches have been introduced to meet end-users’ needs in the development of health promotion interventions among children. However, whereas children are increasingly involved as passive informants in particular parts of research, they are rarely involved as partners, equal to adult researchers, throughout the research process. This is especially prominent in the context of child health where the child is commonly considered to be vulnerable or when the research concerns sensitive situations. In these cases, researchers and gatekeepers to children’s involvement base their resistance to active involvement of children on potential adverse effects on the accuracy or quality of the research or on ethical or moral principles that participation might harm the child. Thus most research aimed at developing health promotion interventions for children in health care is primarily based on the involvement of parents, caregivers, and other stakeholders. Objective: The objective of this paper is to discuss reasons for involving children in health promotive research and to explore models for children’s participation in research as a basis for describing how researchers can use design methodology and participatory approaches to support the participation and contribution of children in a vulnerable context. Methods: We developed and applied a model for children's participation in research to the development of a digital peer support service for children cancer survivors. This guided the selection of appropriate research and design methodologies (such as interviews, focus groups, design sessions, and usability evaluation) for involving the children cancer survivors (8-12 years) in the design of a digital peer support service. Results: We present a model for what children’s participation in research means and describe how we practically implemented this model in a research project on children with cancer. This paper can inform researchers in their planning of strategies for children’s participation and ensure future development of health promotion interventions for children is based on their perspectives. Conclusions: Challenges in reaching a suitable degree of participation during a research project involve both creating opportunities for children to have genuine influence on the research process and organizing this involvement so that they feel they understand what they are involved in and why. To achieve this, it is essential to enable children to be involved in research over time to gain confidence in the researchers and to develop children’s abilities to make decisions throughout the research processes. %M 28174150 %R 10.2196/resprot.7094 %U http://www.researchprotocols.org/2017/2/e19/ %U https://doi.org/10.2196/resprot.7094 %U http://www.ncbi.nlm.nih.gov/pubmed/28174150 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 5 %N 1 %P e3 %T Mobile Health Physical Activity Intervention Preferences in Cancer Survivors: A Qualitative Study %A Robertson,Michael C %A Tsai,Edward %A Lyons,Elizabeth J %A Srinivasan,Sanjana %A Swartz,Maria C %A Baum,Miranda L %A Basen-Engquist,Karen M %+ Center for Energy Balance, Department of Behavioral Science, MD Anderson Cancer Center, Cancer Prevention Building, Unit 1330, 1155 Pressler St, Houston, TX, 77030, United States, 1 713 745 3123, kbasenen@mdanderson.org %K mHealth %K physical activity %K survivors %K technology %K focus groups %K smartphone %D 2017 %7 24.01.2017 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: Cancer survivors are at an elevated risk for several negative health outcomes, but physical activity (PA) can decrease those risks. Unfortunately, adherence to PA recommendations among survivors is low. Fitness mobile apps have been shown to facilitate the adoption of PA in the general population, but there are limited apps specifically designed for cancer survivors. This population has unique needs and barriers to PA, and most existing PA apps do not address these issues. Moreover, incorporating user preferences has been identified as an important priority for technology-based PA interventions, but at present there is limited literature that serves to establish these preferences in cancer survivors. This is especially problematic given the high cost of app development and because the majority of downloaded apps fail to engage users over the long term. Objective: The aim of this study was to take a qualitative approach to provide practical insight regarding this population’s preferences for the features and messages of an app to increase PA. Methods: A total of 35 cancer survivors each attended 2 focus groups; a moderator presented slide shows on potential app features and messages and asked open-ended questions to elicit participant preferences. All sessions were audio recorded and transcribed verbatim. Three reviewers independently conducted thematic content analysis on all transcripts, then organized and consolidated findings to identify salient themes. Results: Participants (mean age 63.7, SD 10.8, years) were mostly female (24/35, 69%) and mostly white (25/35, 71%). Participants generally had access to technology and were receptive to engaging with an app to increase PA. Themes identified included preferences for (1) a casual, concise, and positive tone, (2) tools for personal goal attainment, (3) a prescription for PA, and (4) an experience that is tailored to the user. Participants reported wanting extensive background data collection with low data entry burden and to have a trustworthy source translate their personal data into individualized PA recommendations. They expressed a desire for app functions that could facilitate goal achievement and articulated a preference for a more private social experience. Finally, results indicated that PA goals might be best established in the context of personally held priorities and values. Conclusions: Many of the desired features identified are compatible with both empirically supported methods of behavior change and the relative strengths of an app as a delivery vehicle for behavioral intervention. Participating cancer survivors’ preferences contrasted with many current standard practices for mobile app development, including value-based rather than numeric goals, private socialization in small groups rather than sharing with broader social networks, and interpretation of PA data rather than merely providing numerical data. Taken together, these insights may help increase the acceptability of theory-based mHealth PA interventions in cancer survivors. %M 28119278 %R 10.2196/mhealth.6970 %U http://mhealth.jmir.org/2017/1/e3/ %U https://doi.org/10.2196/mhealth.6970 %U http://www.ncbi.nlm.nih.gov/pubmed/28119278 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 1 %P e11 %T Cancer Survivors’ Experience With Telehealth: A Systematic Review and Thematic Synthesis %A Cox,Anna %A Lucas,Grace %A Marcu,Afrodita %A Piano,Marianne %A Grosvenor,Wendy %A Mold,Freda %A Maguire,Roma %A Ream,Emma %+ School of Health Sciences, Faculty of Health and Medical Sciences, University of Surrey, Duke of Kent Building, Guildford, GU2 7XH, United Kingdom, 44 1483684626, a.cox@surrey.ac.uk %K neoplasms %K telemedicine %K systematic review %K survival %K patient satisfaction %K patient preference %D 2017 %7 09.01.2017 %9 Review %J J Med Internet Res %G English %X Background: Net survival rates of cancer are increasing worldwide, placing a strain on health service provision. There is a drive to transfer the care of cancer survivors—individuals living with and beyond cancer—to the community and encourage them to play an active role in their own care. Telehealth, the use of technology in remote exchange of data and communication between patients and health care professionals (HCPs), is an important contributor to this evolving model of care. Telehealth interventions are “complex,” and understanding patient experiences of them is important in evaluating their impact. However, a wider view of patient experience is lacking as qualitative studies detailing cancer survivor engagement with telehealth are yet to be synthesized. Objective: To systematically identify, appraise, and synthesize qualitative research evidence on the experiences of adult cancer survivors participating in telehealth interventions, to characterize the patient experience of telehealth interventions for this group. Methods: Medline (PubMed), PsychINFO, Cumulative Index for Nursing and Allied Health Professionals (CINAHL), Embase, and Cochrane Central Register of Controlled Trials were searched on August 14, 2015, and March 8, 2016, for English-language papers published between 2006 and 2016. Inclusion criteria were as follows: adult cancer survivors aged 18 years and over, cancer diagnosis, experience of participating in a telehealth intervention (defined as remote communication or remote monitoring with an HCP delivered by telephone, Internet, or hand-held or mobile technology), and reporting qualitative data including verbatim quotes. An adapted Critical Appraisal Skill Programme (CASP) checklist for qualitative research was used to assess paper quality. The results section of each included article was coded line by line, and all papers underwent inductive analysis, involving comparison, reexamination, and grouping of codes to develop descriptive themes. Analytical themes were developed through an iterative process of reflection on, and interpretation of, the descriptive themes within and across studies. Results: Across the 22 included papers, 3 analytical themes emerged, each with 3 descriptive subthemes: (1) influence of telehealth on the disrupted lives of cancer survivors (convenience, independence, and burden); (2) personalized care across physical distance (time, space, and the human factor); and (3) remote reassurance—a safety net of health care professional connection (active connection, passive connection, and slipping through the net). Telehealth interventions represent a convenient approach, which can potentially minimize treatment burden and disruption to cancer survivors’ lives. Telehealth interventions can facilitate an experience of personalized care and reassurance for those living with and beyond cancer; however, it is important to consider individual factors when tailoring interventions to ensure engagement promotes benefit rather than burden. Conclusions: Telehealth interventions can provide cancer survivors with independence and reassurance. Future telehealth interventions need to be developed iteratively in collaboration with a broad range of cancer survivors to maximize engagement and benefit. %M 28069561 %R 10.2196/jmir.6575 %U http://www.jmir.org/2017/1/e11/ %U https://doi.org/10.2196/jmir.6575 %U http://www.ncbi.nlm.nih.gov/pubmed/28069561 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 5 %N 4 %P e214 %T Developing a Web-Based Weight Management Program for Childhood Cancer Survivors: Rationale and Methods %A Zhang,Fang Fang %A Meagher,Susan %A Scheurer,Michael %A Folta,Sara %A Finnan,Emily %A Criss,Kerry %A Economos,Christina %A Dreyer,ZoAnn %A Kelly,Michael %+ Friedman School of Nutrition Science and Policy, Tufts University, 150 Harrison Ave, Jaharis 235, Boston, MA, United States, 1 617 636 3704, fang_fang.zhang@tufts.edu %K weight management %K childhood cancer survivors %K obesity %K Web-based %K development %K nutrition %K physical activity %D 2016 %7 18.11.2016 %9 Original Paper %J JMIR Res Protoc %G English %X Background: Due to advances in the field of oncology, survival rates for children with cancer have improved significantly. However, these childhood cancer survivors are at a higher risk for obesity and cardiovascular diseases and for developing these conditions at an earlier age. Objective: In this paper, we describe the rationale, conceptual framework, development process, novel components, and delivery plan of a behavioral intervention program for preventing unhealthy weight gain in survivors of childhood acute lymphoblastic leukemia (ALL). Methods: A Web-based program, the Healthy Eating and Active Living (HEAL) program, was designed by a multidisciplinary team of researchers who first identified behaviors that are appropriate targets for weight management in childhood ALL survivors and subsequently developed the intervention components, following core behavioral change strategies grounded in social cognitive and self-determination theories. Results: The Web-based HEAL curriculum has 12 weekly self-guided sessions to increase parents’ awareness of the potential impact of cancer treatment on weight and lifestyle habits and the importance of weight management in survivors’ long-term health. It empowers parents with knowledge and skills on parenting, nutrition, and physical activity to help them facilitate healthy eating and active living soon after the child completes intensive cancer treatment. Based on social cognitive theory, the program is designed to increase behavioral skills (goal-setting, self-monitoring, and problem-solving) and self-efficacy and to provide positive reinforcement to sustain behavioral change. Conclusions: Lifestyle interventions are a priority for preventing the early onset of obesity and cardiovascular risk factors in childhood cancer survivors. Intervention programs need to meet survivors’ targeted behavioral needs, address specific barriers, and capture a sensitive window for behavioral change. In addition, they should be convenient, cost-effective and scalable. Future studies are needed to evaluate the feasibility of introducing weight management early in cancer care and the efficacy of early weight management on survivors’ health outcomes. %M 27864163 %R 10.2196/resprot.6381 %U http://www.researchprotocols.org/2016/4/e214/ %U https://doi.org/10.2196/resprot.6381 %U http://www.ncbi.nlm.nih.gov/pubmed/27864163 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 2 %N 2 %P e15 %T Alcohol Intake Among Breast Cancer Survivors: Change in Alcohol Use During a Weight Management Intervention %A Fazzino,Tera L %A Fleming,Kimberly %A Befort,Christie %+ Department of Preventive Medicine and Public Health, University of Kansas Medical Center, 3901 Rainbow Boulevard, Kansas City, KS, United States, 1 9135883030, tfazzino@kumc.edu %K alcohol drinking %K breast cancer %K weight loss %K weight reduction programs %K obesity %D 2016 %7 09.11.2016 %9 Original Paper %J JMIR Cancer %G English %X Background: Daily alcohol intake in quantities as small as half a drink/day significantly increases the risk of breast cancer recurrence for postmenopausal survivors. Interventions designed to modify alcohol use among survivors have not been studied; however, lifestyle interventions that target change in dietary intake may affect alcohol intake. Objective: To evaluate change in alcohol use during a weight loss intervention for obese, rural-dwelling breast cancer survivors. Methods: Data were derived from an 18-month trial that included a 6-month weight loss intervention delivered via group conference calls, followed by a 12-month randomized weight loss maintenance phase in which participants received continued group calls or mailed newsletters. Participants who reported regular alcohol use at baseline (N=37) were included in this study. Results: Mean daily alcohol intake significantly decreased from baseline to 6 months during the weight loss intervention (19.6-2.3 g; P=.001). Mean alcohol intake did not significantly increase (b=0.99, P=.12) during the weight loss maintenance phase (months 6-18) and did not depend on randomization group (b=0.32, P=.799). Conclusions: Findings provide preliminary evidence that a weight loss intervention may address obesity and alcohol use risk factors for cancer recurrence. Minimal mail-based contact post weight loss can maintain alcohol use reductions through 18 months, suggesting durability in these effects. These results highlight a possibility that lifestyle interventions for survivors may modify health behaviors that are not the main foci of an intervention but that coincide with intervention goals. Trial Registration: Clinicaltrials.gov NCT01441011; https://clinicaltrials.gov/ct2/show/NCT01441011 (Archived by WebCite at http://www.webcitation.org/6lsJ9dMa9) %M 28410181 %R 10.2196/cancer.6295 %U http://cancer.jmir.org/2016/2/e15/ %U https://doi.org/10.2196/cancer.6295 %U http://www.ncbi.nlm.nih.gov/pubmed/28410181 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 2 %N 2 %P e12 %T Comparing Web-Based Provider-Initiated and Patient-Initiated Survivorship Care Planning for Cancer Patients: A Randomized Controlled Trial %A Smith,Katherine Clegg %A Tolbert,Elliott %A Hannum,Susan M %A Radhakrishnan,Archana %A Zorn,Kelsey %A Blackford,Amanda %A Greco,Stephen %A Smith,Karen %A Snyder,Claire F %+ Johns Hopkins Bloomberg School of Public Health, 624 N Broadway, Baltimore, MD, 21205, United States, 1 410 502 0025, katecsmith@jhu.edu %K survivorship care plan %K mixed methods study %K randomized controlled trial %D 2016 %7 30.08.2016 %9 Original Paper %J JMIR Cancer %G English %X Background: Survivorship care plans (SCPs) are intended to facilitate communication and coordination between patients, oncologists, and primary care providers. Most SCP initiatives have focused on oncology providers initiating the SCP process, but time and resource barriers have limited uptake. Objective: This trial compares the feasibility and value of 2 Web-based SCP tools: provider-initiated versus patient-initiated. Methods: This mixed-methods study recruited clinicians from 2 academically-affiliated community oncology practices. Eligible patients were treated by a participating oncologist, had nonmetastatic cancer, completed acute treatment ≤ 2 months before enrollment, and had no evidence of disease. Patients were randomized 1:1 to either provider-initiated or patient-initiated SCPs—both are Web-based tools. We conducted qualitative interviews with providers at baseline and follow-up and with patients 2 months after enrollment. In addition, patients were administered the Preparing for Life as a (New) Survivor (PLANS) and Cancer Survivors’ Unmet Needs (CaSUN) surveys at baseline and 2 months. Results: A total of 40 providers were approached for the study, of whom 13 (33%) enrolled. Providers or clinic staff required researcher assistance to identify eligible patients; 41 patients were randomized, of whom 25 completed follow-up (61%; 13 provider-initiated, 12 patient-initiated). Of the 25, 11 (44%) had initiated the SCP; 5 (20%) provided the SCP to their primary care provider. On the Preparing for Life as a (New) Survivor and Cancer Survivors’ Unmet Needs, patients in both arms tended to report high knowledge and confidence and few unmet needs. In qualitative interviews, providers and patients discussed SCPs’ value. Conclusions: Regardless of patient- versus provider-initiated templates and the Web-based design of these tools, barriers to survivorship care planning persist. Further efforts should emphasize workflow functions for identifying and completing SCPs—regardless of the SCP form used. Trial Registration: ClinicalTrials.gov NCT02405819; https://clinicaltrials.gov/ct2/show/NCT02405819 (Archived by WebCite at http://www.webcitation.org/6jWqcWOvK) %M 28410187 %R 10.2196/cancer.5947 %U http://cancer.jmir.org/2016/2/e12/ %U https://doi.org/10.2196/cancer.5947 %U http://www.ncbi.nlm.nih.gov/pubmed/28410187 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 18 %N 8 %P e229 %T Use and Appreciation of a Tailored Self-Management eHealth Intervention for Early Cancer Survivors: Process Evaluation of a Randomized Controlled Trial %A Kanera,Iris Maria %A Willems,Roy A %A Bolman,Catherine A W %A Mesters,Ilse %A Zambon,Victor %A Gijsen,Brigitte CM %A Lechner,Lilian %+ Faculty of Psychology and Educational Sciences, Open University of the Netherlands, Valkenburgerweg 177, Heerlen, 6401 DL, Netherlands, 31 455762448, iris.kanera@ou.nl %K eHealth %K web-based intervention %K computer tailoring %K cancer survivorship %K intervention usage %K appreciation %K multiple behavior intervention %K process evaluation %K self-management %D 2016 %7 23.08.2016 %9 Original Paper %J J Med Internet Res %G English %X Background: A fully automated computer-tailored Web-based self-management intervention, Kanker Nazorg Wijzer (KNW [Cancer Aftercare Guide]), was developed to support early cancer survivors to adequately cope with psychosocial complaints and to promote a healthy lifestyle. The KNW self-management training modules target the following topics: return to work, fatigue, anxiety and depression, relationships, physical activity, diet, and smoking cessation. Participants were guided to relevant modules by personalized module referral advice that was based on participants’ current complaints and identified needs. Objective: The aim of this study was to evaluate the adherence to the module referral advice, examine the KNW module use and its predictors, and describe the appreciation of the KNW and its predictors. Additionally, we explored predictors of personal relevance. Methods: This process evaluation was conducted as part of a randomized controlled trial. Early cancer survivors with various types of cancer were recruited from 21 Dutch hospitals. Data from online self-report questionnaires and logging data were analyzed from participants allocated to the intervention condition. Chi-square tests were applied to assess the adherence to the module referral advice, negative binominal regression analysis was used to identify predictors of module use, multiple linear regression analysis was applied to identify predictors of the appreciation, and ordered logistic regression analysis was conducted to explore possible predictors of perceived personal relevance. Results: From the respondents (N=231; mean age 55.6, SD 11.5; 79.2% female [183/231]), 98.3% (227/231) were referred to one or more KNW modules (mean 2.9, SD 1.5), and 85.7% (198/231) of participants visited at least one module (mean 2.1, SD 1.6). Significant positive associations were found between the referral to specific modules (range 1-7) and the use of corresponding modules. The likelihoods of visiting modules were higher when respondents were referred to those modules by the module referral advice. Predictors of visiting a higher number of modules were a higher number of referrals by the module referral advice (β=.136, P=.009), and having a partner was significantly related with a lower number of modules used (β=-.256, P=.044). Overall appreciation was high (mean 7.5, SD 1.2; scale 1-10) and was significantly predicted by a higher perceived personal relevance (β=.623, P=.000). None of the demographic and cancer-related characteristics significantly predicted the perceived personal relevance. Conclusions: The KNW in general and more specifically the KNW modules were well used and highly appreciated by early cancer survivors. Indications were found that the module referral advice might be a meaningful intervention component to guide the users in following a preferred selection of modules. These results indicate that the fully automated Web-based KNW provides personal relevant and valuable information and support for early cancer survivors. Therefore, this intervention can complement usual cancer aftercare and may serve as a first step in a stepped-care approach. Trial Registration: Nederlands Trial Register: NTR3375; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=3375 (Archived by WebCite at http://www.webcitation.org/6jo4jO7kb) %M 27554525 %R 10.2196/jmir.5975 %U http://www.jmir.org/2016/8/e229/ %U https://doi.org/10.2196/jmir.5975 %U http://www.ncbi.nlm.nih.gov/pubmed/27554525 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 18 %N 7 %P e162 %T 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 %A Nicolaije,Kim AH %A Ezendam,Nicole PM %A Pijnenborg,Johanna MA %A Boll,Dorry %A Vos,Maria Caroline %A Kruitwagen,Roy FPM %A van de Poll-Franse,Lonneke V %+ Center of Research on Psychology in Somatic diseases (CoRPS), Department of Medical and Clinical Psychology, Tilburg University, Warandelaan 2, PO Box 90153, Tilburg, 5000 LE, Netherlands, 31 134663118, k.a.h.schellekens-nicolaije@uu.nl %K Survivorship Care Plan %K Internet use %K pragmatic cluster randomized trial %K endometrial neoplasms %K patient-reported outcomes %K information provision %D 2016 %7 08.07.2016 %9 Original Paper %J J Med Internet Res %G English %X 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) %M 27392550 %R 10.2196/jmir.4914 %U http://www.jmir.org/2016/7/e162/ %U https://doi.org/10.2196/jmir.4914 %U http://www.ncbi.nlm.nih.gov/pubmed/27392550 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 5 %N 2 %P e118 %T Enhancing the Return to Work of Cancer Survivors: Development and Feasibility of the Nurse-Led eHealth Intervention Cancer@Work %A Tamminga,Sietske J %A van Hezel,Sanne %A de Boer,Angela GEM %A Frings-Dresen,Monique HW %+ Coronel Institute of Occupational Health, Academic Medical Center, Meibergdreef 9 / K0-110, Amsterdam, 1105 AZ, Netherlands, 31 205663279, s.j.tamminga@amc.nl %K cancer %K return to work %K eHealth %K survivorship %K feasibility studies %K self-management %D 2016 %7 10.06.2016 %9 Original Paper %J JMIR Res Protoc %G English %X Background: It is important to enhance the return to work of cancer survivors with an appropriate intervention, as cancer survivors experience problems upon their return to work but consider it an essential part of their recovery. Objective: The objective of our study was to develop an eHealth intervention to enhance the return to work of cancer survivors and to test the feasibility of the eHealth intervention with end users. Methods: To develop the intervention we 1) searched the literature, 2) interviewed 7 eHealth experts, 3) interviewed 7 cancer survivors, 2 employers, and 7 occupational physicians, and 4) consulted experts. To test feasibility, we enrolled 39 cancer survivors, 9 supervisors, 7 occupational physicians, 9 general physicians and 2 social workers and gave them access to the eHealth intervention. We also interviewed participants, asked them to fill in a questionnaire, or both, to test which functionalities of the eHealth intervention were appropriate and which aspects needed improvement. Results: Cancer survivors particularly want information and support regarding the possibility of returning to work, and on financial and legal aspects of their situation. Furthermore, the use of blended care and the personalization of the eHealth intervention were preferred features for increasing compliance. The first version of the eHealth intervention consisted of access to a personal and secure website containing various functionalities for cancer survivors blended with support from their specialized nurse, and a public website for employers, occupational physicians, and general physicians. The eHealth intervention appeared feasible. We adapted it slightly by adding more information on different cancer types and their possible effects on return to work. Conclusions: A multistakeholder and mixed-method design appeared useful in the development of the eHealth intervention. It was challenging to meet all end user requirements due to legal and privacy constraints. The eHealth intervention appeared feasible, although implementation in daily practice needs to be subject of further research. ClinicalTrial: Dutch Trial Register number (NTR): 5190; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=5190 (Archived by WebCite at http://www.webcitation.org/6hm4WQJqC) %M 27286819 %R 10.2196/resprot.5565 %U http://www.researchprotocols.org/2016/2/e118/ %U https://doi.org/10.2196/resprot.5565 %U http://www.ncbi.nlm.nih.gov/pubmed/27286819 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 2 %N 1 %P e7 %T Assessment of Cancer Survivors’ Experiences of Using a Publicly Available Physical Activity Mobile Application %A Puszkiewicz,Patrycja %A Roberts,Anna L %A Smith,Lee %A Wardle,Jane %A Fisher,Abigail %+ Health Behaviour Research Centre, Department of Epidemiology & Public Health, University College London, Gower Street, London, WC1E 6BT, United Kingdom, 44 02076791723, anna.roberts.15@ucl.ac.uk %K cancer survivors %K mobile applications %K mHealth %K physical activity %K sleep %D 2016 %7 31.05.2016 %9 Original Paper %J JMIR Cancer %G English %X Background: Regular participation in physical activity (PA) is associated with improved physical and psychosocial outcomes in cancer survivors. However, PA levels are low during and after cancer treatment. Interventions to promote PA in this population are needed. PA mobile apps are popular and have potential to increase PA participation, but little is known about how appropriate or relevant they are for cancer survivors. Objective: This study aims to (1) assess recruitment, study uptake, and engagement for a publicly available PA mobile app (GAINFitness) intervention in cancer survivors; (2) assess cancer survivors’ attitudes towards the app; (3) understand how the app could be adapted to better meet the needs of cancer survivors; and (4) to determine the potential for change in PA participation and psychosocial outcomes over a 6-week period of using the app. Methods: The present study was a one-arm, pre-post design. Cancer survivors (N=11) aged 33 to 62 years with a mean (SD) age of 45 (9.4), and 82% (9/11) female, were recruited (via community/online convenience sampling to use the app for 6 weeks). Engagement with the app was measured using self-reported frequency and duration of usage. Qualitative semi-structured telephone interviews were conducted after the 6-week study period and were analyzed using thematic analysis. PA, well-being, fatigue, quality of life (QOL), sleep quality, and anxiety and depression were self-reported at baseline and at a 6-week follow-up using the Godin Leisure Time Exercise Questionnaire (GLTEQ), the Functional Assessment of Cancer Therapy-General (FACT-G), the Functional Assessment of Chronic Illness Therapy (FACIT)-Fatigue Scale Questionnaire, the Health and Quality of Life Outcomes (EQ5D) Questionnaire, the Pittsburgh Sleep Quality Index (PSQI), and the Hospital Anxiety and Depression Scale (HADS), respectively. Results: Of the people who responded to the study advertisement, 73% (16/22) agreed to participate and 100% (11/11) of the participants who started the study completed all baseline and follow-up outcome measures and the telephone interview. On average, participants used the app twice a week for 25 minutes per session. Four themes were identified from the qualitative interviews surrounding the suitability of the app for cancer survivors and how it could be adapted: (1) barriers to PA, (2) receiving advice about PA from reliable sources, (3) tailoring the application to one’s lifestyle, and (4) receiving social support from others. Pre-post comparison showed significant increases in strenuous PA, improvements in sleep quality, and reductions in mild PA. There were no significant changes in moderate PA or other psychosocial outcomes. Conclusions: All participants engaged with the app and qualitative interviews highlighted that the app was well-received. A generic PA mobile app could bring about positive improvements in PA participation and psychosocial outcomes among cancer survivors. However, a targeted PA app aimed specifically towards cancer survivors may increase the relevance and suitability of the app for this population. %M 28410168 %R 10.2196/cancer.5380 %U http://cancer.jmir.org/2016/1/e7/ %U https://doi.org/10.2196/cancer.5380 %U http://www.ncbi.nlm.nih.gov/pubmed/28410168 %0 Journal Article %@ 2369-1999 %I JMIR Publications Inc. %V 2 %N 1 %P e6 %T The Effects of Physical Activity on Health and Quality of Life in Adolescent Cancer Survivors: A Systematic Review %A Wurz,Amanda %A Brunet,Jennifer %+ School of Human Kinetics, Faculty of Health Sciences, University of Ottawa, Montpetit Hall, Room 339, 125 University Private, Ottawa, ON, K1N 6N5, Canada, 1 613 562 5800 ext 3068, jennifer.brunet@uottawa.ca %K exercise %K controlled clinical trial %K randomized controlled trial %K review %K treatment effectiveness %D 2016 %7 24.05.2016 %9 Original Paper %J JMIR Cancer %G English %X Background: There are numerous published controlled trials assessing the safety and the benefits of physical activity (PA) for child and adult cancer survivors. However, trials exclusively comprised of adolescent cancer survivors aged 13-19 years, who may experience different health and quality of life (QOL) effects as a function of their developmental status, are lacking. Rather, some trials have included both adolescent and child cancer survivors together. Objective: The aim of this systematic review was to synthesize the findings from randomized controlled trails (RCTs) and controlled clinical trials (CCTs) investigating the effects of PA on health and QOL outcomes in samples comprised of >50% adolescent cancer survivors to summarize the current state of evidence, identify knowledge gaps, and highlight areas in need of additional research within this population. Methods: Using a search strategy developed for this review, 10 electronic databases were searched for RCTs and CCTs that reported on the effects of PA on at least 1 health and/or QOL outcome in samples comprised of >50% adolescent cancer survivors. Results: From the 2249 articles identified, 2 CCTs met the predetermined eligibility criteria and were included in this review. Combined, 28 adolescents (of 41 participants) who were receiving active treatment participated in the 2 studies reviewed. A total of 4 health and QOL outcomes (ie, bone mass, fatigue, grip strength, QOL) were assessed pre- and post-PA intervention. Conclusions: On the basis of the 2 studies reviewed, PA appears to be safe and feasible. PA also shows promise to mitigate reductions in bone mass and might be a viable strategy to improve fatigue, grip strength, and QOL. High-quality controlled trials with larger samples exclusively comprised of adolescent cancer survivors that assess a wide range of outcomes are needed to determine the effects of PA on health and QOL outcomes in this population. %M 28410184 %R 10.2196/cancer.5431 %U http://cancer.jmir.org/2016/1/e6/ %U https://doi.org/10.2196/cancer.5431 %U http://www.ncbi.nlm.nih.gov/pubmed/28410184 %0 Journal Article %@ 2369-1999 %I JMIR Publications Inc. %V 2 %N 1 %P e4 %T Pilot and Feasibility Test of a Mobile Health-Supported Behavioral Counseling Intervention for Weight Management Among Breast Cancer Survivors %A M Quintiliani,Lisa %A Mann,Devin M %A Puputti,Marissa %A Quinn,Emily %A Bowen,Deborah J %+ Boston University, Department of Medicine, Section of General Internal Medicine, 801 Massachusetts Ave, Crosstown Center, Boston, MA, 02118, United States, 1 617 638 2777, lmquinti@bu.edu %K telemedicine %K survivors %K breast neoplasms %K health behavior %K body weight %D 2016 %7 09.05.2016 %9 Original Paper %J JMIR Cancer %G English %X Background: Health behavior and weight management interventions for cancer survivors have the potential to prevent future cancer recurrence and improve long-term health; however, their translation can be limited if the intervention is complex and involves high participant burden. Mobile health (mHealth) offers a delivery modality to integrate interventions into daily life routines. Objective: The objective of this study was to evaluate the effects of a one-group trial with a pre-post evaluation design on engagement (use and acceptability), physiological (weight), behavioral (diet and physical activity), and other secondary outcomes. Methods: The 10-week intervention consisted of mHealth components (self-monitoring of selected diet behaviors via daily text messages, wireless devices to automatically track weight and steps) and 4 motivational interviewing–based technology-assisted phone sessions with a nonprofessionally trained counselor. Participants were overweight breast cancer survivors who had completed treatment and owned a smartphone. Weight was measured objectively; diet and physical activity were measured with brief self-reported questionnaires. Results: Ten women participated; they had a mean age of 59 years (SD 6), 50% belonged to a racial or ethnic minority group, 50% had some college or less, and 40% reported using Medicaid health insurance. Engagement was high: out of 70 days in total, the mean number of days recording steps via the wristband pedometer was 64 (SD 7), recording a weight via the scale was 45 (SD 24), and responding to text messages was 60 (SD 13); 100% of participants completed all 4 calls with the counselor. Most (90%) were very likely to participate again and recommend the program to others. Mean weight in pounds decreased (182.5 to 179.1, mean change −3.38 [SD 7.67]), fruit and vegetable daily servings increased (2.89 to 4.42, mean change 1.53 [SD 2.82]), and self-reported moderate physical activity increased in metabolic equivalent of task (MET) minutes per week (2791 to 3336, mean change 545 [SD 1694]). Conclusions: Findings support the conduct of a fully powered trial to evaluate the efficacy of mHealth as a feasible intervention modality for breast cancer survivors. Future research should employ accelerometer-based physical activity assessment and consider development of an all-in-one app to integrate devices, messaging, and educational content and other mHealth approaches to support behavioral counselors conducting weight management interventions. Trial Registration: ClinicalTrials.gov NCT02387671; https://clinicaltrials.gov/ct2/show/NCT02387671 (Archived by WebCite at http://www.webcitation.org/6hGEuttbZ). %M 28410174 %R 10.2196/cancer.5305 %U http://cancer.jmir.org/2016/1/e4/ %U https://doi.org/10.2196/cancer.5305 %U http://www.ncbi.nlm.nih.gov/pubmed/28410174 %0 Journal Article %@ 1929-0748 %I JMIR Publications Inc. %V 5 %N 2 %P e75 %T A Guided Workbook Intervention (WorkPlan) to Support Work-Related Goals Among Cancer Survivors: Protocol of a Feasibility Randomized Controlled Trial %A Woods,Pernille Luxhøj %A Schumacher,Lauren %A Sadhra,Steven S %A Sutton,Andrew J %A Zarkar,Anjali %A Rolf,Pauline %A Grunfeld,Elizabeth A %+ Coventry University, Centre for Technology Enabled Health Research, Richard Crossman Building (4th Floor), Priory Street, Coventry,, United Kingdom, 44 247 765 9968, beth.grunfeld@coventry.ac.uk %K oncology %K cancer %K return to work %K intervention %K protocol %K RCT %D 2016 %7 03.05.2016 %9 Protocol %J JMIR Res Protoc %G English %X Background: Returning to and staying at work following illness is associated with better physical and psychological functioning. Not working has been shown to be associated with reduced self-esteem, lowered self-efficacy, and decreased belief in one's ability to return to the workplace. Although there is a growing body of research looking at what predicts return to work following cancer treatment, there are fewer studies examining interventions targeting return to work. Objective: The primary objective is to assess the feasibility and acceptability of a theoretically led workbook intervention designed to support cancer patients in returning to work to inform a fully powered randomized controlled trial (RCT). Methods: This is a multicenter feasibility RCT where the main analysis uses a qualitative approach. Sixty participants (aged 18-65 years) who have received a diagnosis of cancer and who intend to return to work will be randomized to either the WorkPlan intervention group or a usual care group (ratio 1:1). Participants in the intervention group will receive a guided workbook intervention (which contains activities aimed at eliciting thoughts and beliefs, identifying targets and actions, and concrete steps to achieve goals) and will receive telephone support over a 4-week period. The primary outcome measure is time taken to return to work (in days), and secondary outcome measures include mood, quality of life, illness perceptions, and job satisfaction. Data will be collected through postal questionnaires administered immediately postintervention and at 6- and 12-month follow-ups. In addition, interviews will be undertaken immediately postintervention (to explore acceptability of the intervention and materials) and at 12-month follow-up (to explore perceptions of participation in the trial and experiences of returning to work). Results: Enrollment for the study will be completed in May 2016. Data analysis will commence in April 2017, and the first results are expected to be submitted for publication in late 2017. Conclusions: Currently no standardized return-to-work intervention based on targeting cancer patient beliefs is in existence. If the intervention is shown to be feasible and acceptable, the results of this study will inform a future full RCT with the potential to provide a valuable and cost-efficient tool in supporting cancer survivors in the return-to-work process. Trial Registration: International Standard Randomized Controlled Trial Number (ISRCTN): ISRCTN56342476; http://www.isrctn.com/ISRCTN56342476 (Archived by WebCite at http://www.webcitation.org/6gblhEPXd). %M 27143229 %R 10.2196/resprot.5300 %U http://www.researchprotocols.org/2016/2/e75/ %U https://doi.org/10.2196/resprot.5300 %U http://www.ncbi.nlm.nih.gov/pubmed/27143229 %0 Journal Article %@ 1929-0748 %I JMIR Publications Inc. %V 5 %N 1 %P e54 %T A Systematic Review Protocol to Assess the Effects of Physical Activity on Health and Quality of Life Outcomes in Adolescent Cancer Survivors %A Wurz,Amanda %A Brunet,Jennifer %+ University of Ottawa, Faculty of Health Sciences, School of Human Kinetics, 339 MNT, 125 University Private, Ottawa, ON, K1N 6N5, Canada, 1 613 562 5800 ext 3068, jennifer.brunet@uottawa.ca %K controlled clinical trial %K randomized controlled trial %K adolescent %K oncology %K neoplasm %K exercise %K quality of life. %D 2016 %7 30.03.2016 %9 Original Paper %J JMIR Res Protoc %G English %X Background: The benefits of physical activity for child and adult cancer survivors have been summarized in previous systematic reviews. However, no review has summarized the evidence for adolescent cancer survivors. Objective: This paper describes the design of a protocol to conduct a systematic review of published studies examining the effects of physical activity on health and quality of life outcomes for adolescent cancer survivors. Methods: Several guidelines informed the development of this protocol. The Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols guidelines provided the structure by which to conduct and report the protocol; though some adaptations were made with regards to search terms, data synthesis, and evaluating the risk of bias. The Cochrane Handbook for Systematic Reviews of Interventions was used to guide research question development, search term selection, and the data extraction form. The Consolidated Standards of Reporting Trials guidelines helped inform the data extraction form. Lastly, the Guidance on the Conduct of Narrative Synthesis in Systematic Reviews informed the data synthesis. Ten electronic databases were identified and a search strategy was developed using a combination of Medical Subject Headings terms and keywords that were developed by the authors and peer reviewed by a university librarian. Both authors independently screened eligible studies for final inclusion, and data were abstracted using a form developed by the research team. A decision was made to synthesize all data narratively. Results: The review has now been completed, peer-reviewed, and accepted for publication in a forthcoming issue of JMIR Cancer. Conclusions: As this will be the first systematic review on this topic, outlining the protocol ensures transparency for the completed review. Further, this protocol illustrates how elements from several guidelines were incorporated to answer the research question (ie, what is the effect of physical activity on health and quality of life outcomes in adolescent cancer survivors). This flexible approach was necessary as a function of the paucity of available research on this topic. %M 27030210 %R 10.2196/resprot.5383 %U http://www.researchprotocols.org/2016/1/e54/ %U https://doi.org/10.2196/resprot.5383 %U http://www.ncbi.nlm.nih.gov/pubmed/27030210 %0 Journal Article %@ 1929-0748 %I JMIR Publications Inc. %V 5 %N 1 %P e34 %T A Community-Engaged Approach to Developing a Mobile Cancer Prevention App: The mCPA Study Protocol %A Smith,Selina Ann %A Whitehead,Mary Smith %A Sheats,Joyce %A Mastromonico,Jeff %A Yoo,Wonsuk %A Coughlin,Steven Scott %+ Institute of Public & Preventive Health, Department of Family Medicine Medical College of Georgia, Georgia Regents University, 1120 15th St., CJ2300, Augusta, GA, 30912, United States, 1 706 721 1104, SESMITH@gru.edu %K smartphone applications %K African Americans %K breast cancer survivors %K cancer prevention guidelines %K dietary intake %K physical activity %D 2016 %7 02.03.2016 %9 Original Paper %J JMIR Res Protoc %G English %X Background: Rapid growth of mobile technologies has resulted in a proliferation of lifestyle-oriented mobile phone apps. However, most do not have a theoretical framework and few have been developed using a community-based participatory research approach. A community academic team will develop a theory-based, culturally tailored, mobile-enabled, Web-based app—the Mobile Cancer Prevention App (mCPA)—to promote adherence to dietary and physical activity guidelines. Objective: The aim of this study is to develop mCPA content with input from breast cancer survivors. Methods: Members of SISTAAH (Survivors Involving Supporters to Take Action in Advancing Health) Talk (N=12), treated for Stages I-IIIc breast cancer for less than 1 year, 75 years of age or younger, and English-speaking and writing, will be recruited to participate in the study. To develop the app content, breast cancer survivors will engage with researchers in videotaped and audiotaped sessions, including (1) didactic instructions with goals for, benefits of, and strategies to enhance dietary intake and physical activity, (2) guided discussions for setting individualized goals, monitoring progress, and providing or receiving feedback, (3) experiential nutrition education through cooking demonstrations, and (4) interactive physical activity focused on walking, yoga, and strength training. Qualitative (focus group discussions and key informant interviews) and quantitative (sensory evaluation) methods will be used to evaluate the participatory process and outcomes. Results: Investigators and participants anticipate development of an acceptable (frequency and duration of usage) feasible (structure, ease of use, features), and accessible mobile app available for intervention testing in early 2017. Conclusions: Depending on the availability of research funding, mCPA testing, which will be initiated in Miami, will be extended to Chicago, Houston, Philadelphia, and Los Angeles. %M 26935995 %R 10.2196/resprot.5290 %U http://www.researchprotocols.org/2016/1/e34/ %U https://doi.org/10.2196/resprot.5290 %U http://www.ncbi.nlm.nih.gov/pubmed/26935995 %0 Journal Article %@ 2369-1999 %I JMIR Publications Inc. %V 2 %N 1 %P e1 %T Interest in Health Behavior Intervention Delivery Modalities Among Cancer Survivors: A Cross-Sectional Study %A Martin,Emily C %A Basen-Engquist,Karen %A Cox,Matthew G %A Lyons,Elizabeth J %A Carmack,Cindy L %A Blalock,Janice A %A Demark-Wahnefried,Wendy %+ University of Texas MD Anderson Cancer Center, Department of Behavioral Science, PO Box 301439, Unit 1330, Houston, TX, 77230-1439, United States, 1 713 745 0338, emilymar@gmail.com %K cancer survivor %K technology %K smartphone %K behavioral intervention %K physical activity %K diet %D 2016 %7 11.02.2016 %9 Original Paper %J JMIR Cancer %G English %X Background: Effective, broad-reaching channels are important for the delivery of health behavior interventions in order to meet the needs of the growing population of cancer survivors in the United States. New technology presents opportunities to increase the reach of health behavior change interventions and therefore their overall impact. However, evidence suggests that older adults may be slower in their adoption of these technologies than the general population. Survivors’ interest for more traditional channels of delivery (eg, clinic) versus new technology-based channels (eg, smartphones) may depend on a variety of factors, including demographics, current health status, and the behavior requiring intervention. Objective: The aim of this study was to determine the factors that predict cancer survivors’ interest in new technology-based health behavior intervention modalities versus traditional modalities. Methods: Surveys were mailed to 1871 survivors of breast, prostate, and colorectal cancer. Participants’ demographics, diet and physical activity behaviors, interest in health behavior interventions, and interest in intervention delivery modalities were collected. Using path analysis, we explored the relationship between four intervention modality variables (ie, clinic, telephone, computer, and smartphone) and potential predictors of modality interest. Results: In total, 1053 respondents to the survey (56.3% response rate); 847 provided complete data for this analysis. Delivery channel interest was highest for computer-based interventions (236/847, 27.9% very/extremely interested) and lowest for smartphone–based interventions (73/847, 8.6%), with interest in clinic-based (147/847, 17.3%) and telephone-delivered (143/847, 16.9%) falling in between. Use of other technology platforms, such as Web cameras and social networking sites, was positively predictive of interest in technology-based delivery channels. Older survivors were less likely to report interest in smartphone–based diet interventions. Physical activity, fruit and vegetable consumption, weight status, and age moderated relationships between interest in targeted intervention behavior and modality. Conclusions: This study identified several predictors of survivor interest in various health behavior intervention delivery modalities. Overall, computer-based interventions were found to be most acceptable, while smartphones were the least. Factors related to survivors’ current technology use and health status play a role in their interest for technology-based intervention versus more traditional delivery channels. Future health behavior change research in this population should consider participants’ demographic, clinical, and lifestyle characteristics when selecting a delivery channel. Furthermore, current health behavior interventions for older cancer survivors may be best delivered over the Internet. Smartphone interventions may be feasible in the future following further adoption and familiarization by this particular population. %M 28410164 %R 10.2196/cancer.5247 %U http://cancer.jmir.org/2016/1/e1/ %U https://doi.org/10.2196/cancer.5247 %U http://www.ncbi.nlm.nih.gov/pubmed/28410164 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 11 %P e270 %T Empowerment of Cancer Survivors Through Information Technology: An Integrative Review %A Groen,Wim G %A Kuijpers,Wilma %A Oldenburg,Hester SA %A Wouters,Michel WJM %A Aaronson,Neil K %A van Harten,Wim H %+ The Netherlands Cancer Institute, Division of Psychosocial Research and Epidemiology, Plesmanlaan 121, 1066 CX, Amsterdam, , Netherlands, 31 205122861, w.v.harten@nki.nl %K review %K neoplasms %K Internet %K technology %K health education %K chronic disease %K power (psychology) %D 2015 %7 27.11.2015 %9 Review %J J Med Internet Res %G English %X Background: Patient empowerment may be an effective approach to strengthen the role of cancer survivors and to reduce the burden on health care. However, it is not well conceptualized, notably in oncology. Furthermore, it is unclear to what extent information technology (IT) services can contribute to empowerment of cancer survivors. Objective: We aim to define the conceptual components of patient empowerment of chronic disease patients, especially cancer survivors, and to explore the contribution of existing and new IT services to promote empowerment. Methods: Electronic databases were searched to identify theoretical and empirical articles regarding empowerment. We extracted and synthesized conceptual components of patient empowerment (ie, attributes, antecedents, and consequences) according to the integrated review methodology. We identified recent IT services for cancer survivors by examining systematic reviews and a proposed inventory of new services, and we related their features and effects to the identified components of empowerment. Results: Based on 26 articles, we identified five main attributes of patient empowerment: (1) being autonomous and respected, (2) having knowledge, (3) having psychosocial and behavioral skills, (4) perceiving support from community, family, and friends, and (5) perceiving oneself to be useful. The latter two were specific for the cancer setting. Systematic reviews of IT services and our additional inventory helped us identify five main categories: (1) educational services, including electronic survivorship care plan services, (2) patient-to-patient services, (3) electronic patient-reported outcome (ePRO) services, (4) multicomponent services, and (5) portal services. Potential impact on empowerment included knowledge enhancement and, to a lesser extent, enhancing autonomy and skills. Newly developed services offer promising and exciting opportunities to empower cancer survivors, for instance, by providing tailored advice for supportive or follow-up care based on patients' input. Conclusions: We identified five main components of empowerment and showed that IT services may especially contribute to empowerment by providing knowledge. The components of empowerment could be used to develop IT services for cancer survivors. It is important to take into account patients’ needs, follow up on these needs, and create a service that is attractive and easy to use. %M 26614438 %R 10.2196/jmir.4818 %U http://www.jmir.org/2015/11/e270/ %U https://doi.org/10.2196/jmir.4818 %U http://www.ncbi.nlm.nih.gov/pubmed/26614438 %0 Journal Article %@ 2369-1999 %I JMIR Publications Inc. %V 1 %N 2 %P e12 %T Feasibility and Preliminary Efficacy of an Online Intervention to Increase Physical Activity in Nova Scotian Cancer Survivors: A Randomized Controlled Trial %A Forbes,Cynthia C %A Blanchard,Chris M %A Mummery,W Kerry %A Courneya,Kerry S %+ University of Alberta, Van Vliet Complex, University Hall, Edmonton, AB, , Canada, 1 780 492 2829, kerry.courneya@ualberta.ca %K Web-based %K survivorship %K home-based %K exercise %K efficacy %K feasibility %D 2015 %7 23.11.2015 %9 Original Paper %J JMIR Cancer %G English %X Background: Physical activity (PA) behavior change interventions among cancer survivors have used face-to-face, telephone, email, and print-based methods. However, computer-tailored, Internet-delivered programs may be a more viable option to achieve PA behavior change. Objective: The objective of this study is to test the feasibility and preliminary efficacy of a Web-based PA behavior change program among cancer survivors. Methods: Nova Scotian cancer survivors (N=415) who previously expressed interest in a research study were approached. Interested participants were asked to complete an online assessment of PA and quality of life (QOL) before being randomized to either a theory-based PA behavior change program using the PA tracking website UWALK (UCAN; n=48) or usual care (UC; n=47). After the intervention (9 weeks), participants completed another online assessment of PA and QOL as well as measures to evaluate the program and website. Descriptive analyses from surveys and Web analytic software were used to assess feasibility and mean change scores were used to test efficacy. Results: Of all contacted survivors, 95 (22.3%, 95/415) completed baseline measures and were randomized with 84 (88%, 84/95) completing the 9-week assessment. The behavior change program and website were rated highly on the satisfaction items. Average logins were 10.3 (1.1 per week) and 26.0% (111/432) of the weekly modules were completed. Most participants (71%, 29/41) indicated they were more aware of their daily PA levels and 68% (28/41) found the site easily navigable. Adjusted group differences in total exercise minutes favored the UCAN group by an increase of 42 minutes (95% CI -65 to 150; P=.44, d=0.17). Results were more pronounced, though still nonsignificant, among those not meeting guidelines at baseline where UCAN increased PA by 52 minutes compared to a decrease of 15 minutes in UC (adjusted between group difference=75, 95% CI -95 to 244; P=.38, d=0.27). Conclusions: We found that Internet-delivery may be a feasible alternative to more costly methods to promote PA among Nova Scotian cancer survivors. Moreover, there was a trend toward increased PA among those in the UCAN group, especially among those who were not meeting PA guidelines at baseline. Future research should focus on recruiting inactive cancer survivors and engaging them in the website to determine the optimal potential of Web-based interventions for promoting PA in cancer survivors. %M 28410166 %R 10.2196/cancer.4586 %U http://cancer.jmir.org/2015/2/e12/ %U https://doi.org/10.2196/cancer.4586 %U http://www.ncbi.nlm.nih.gov/pubmed/28410166 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 10 %P e235 %T An eHealth Application in Head and Neck Cancer Survivorship Care: Health Care Professionals' Perspectives %A Duman-Lubberding,Sanne %A van Uden-Kraan,Cornelia F %A Peek,Niels %A Cuijpers,Pim %A Leemans,C René %A Verdonck-de Leeuw,Irma M %+ Department of Otolaryngology / Head and Neck Surgery, VU University Medical Center, PO Box 7057, Amsterdam, 1007 MB, Netherlands, 31 20 444 0931, s.lubberding@vumc.nl %K cancer %K tertiary prevention %K participatory design approach %K follow-up care %K supportive care %D 2015 %7 21.10.2015 %9 Original Paper %J J Med Internet Res %G English %X Background: Although many cancer survivors could benefit from supportive care, they often do not utilize such services. Previous studies have shown that patient-reported outcomes (PROs) could be a solution to meet cancer survivors’ needs, for example through an eHealth application that monitors quality of life and provides personalized advice and supportive care options. In order to develop an effective application that can successfully be implemented in current health care, it is important to include health care professionals in the development process. Objective: The aim of this study was to investigate health care professionals’ perspectives toward follow-up care and an eHealth application, OncoKompas, in follow-up cancer care that monitors quality of life via PROs, followed by automatically generated tailored feedback and personalized advice on supportive care. Methods: Health care professionals involved in head and neck cancer care (N=11) were interviewed on current follow-up care and the anticipated value of the proposed eHealth application (Step 1). A prototype of the eHealth application, OncoKompas, was developed (Step 2). Cognitive walkthroughs were conducted among health care professionals (N=21) to investigate perceived usability (Step 3). Interviews were recorded, transcribed verbatim, and analyzed by 2 coders. Results: Health care professionals indicated several barriers in current follow-up care including difficulties in detecting symptoms, patients’ perceived need for supportive care, and a lack of time to encourage survivors to obtain supportive care. Health care professionals expected the eHealth application to be of added value. The cognitive walkthroughs demonstrated that health care professionals emphasized the importance of tailoring care. They considered the navigation structure of OncoKompas to be complex. Health care professionals differed in their opinion toward the best strategy to implement the application in clinical practice but indicated that it should be incorporated in the HNC cancer care pathway to ensure all survivors would benefit. Conclusions: Health care professionals experienced several barriers in directing patients to supportive care. They were positive toward the development and implementation of an eHealth application and expected it could support survivors in obtaining supportive care tailored to their needs. The cognitive walkthroughs revealed several points for optimizing the application prototype and developing an efficient implementation strategy. Including health care professionals in an early phase of a participatory design approach is valuable in developing an eHealth application and an implementation strategy meeting stakeholders’ needs. %M 26489918 %R 10.2196/jmir.4870 %U http://www.jmir.org/2015/10/e235/ %U https://doi.org/10.2196/jmir.4870 %U http://www.ncbi.nlm.nih.gov/pubmed/26489918 %0 Journal Article %@ 1929-0748 %I JMIR Publications Inc. %V 4 %N 3 %P e115 %T An Internet-Based Means of Monitoring Quality of Life in Post-Prostate Radiation Treatment: A Prospective Cohort Study %A Parker,Brent %A Rajapakshe,Rasika %A Moldovan,Andrew %A Araujo,Cynthia %A Crook,Juanita %+ British Columbia Cancer Agency, Sindi Ahluwalia Hawkins Centre for the Southern Interior, 399 Royal Avenue, Kelowna, BC, , Canada, 1 250 712 3966 ext 686912, brent.parker2@interiorhealth.ca %K prostate cancer %K radiation oncology %K quality of life %K patient-reported outcomes %K Internet survey %K prospective study %D 2015 %7 28.09.2015 %9 Original Paper %J JMIR Res Protoc %G English %X Background: Widespread integration of the Internet has resulted in an increase in the feasibility of using Web-based technologies as a means of communicating with patients. It may be possible to develop secure and standardized systems that facilitate Internet-based patient-reported outcomes which could be used to improve patient care. Objective: This study investigates patient interest in participating in an online post-treatment disease outcomes and quality of life monitoring program developed specifically for patients who have received radiation treatment for prostate cancer at a regional oncology center. Methods: Patients treated for prostate cancer between 2007 and 2011 (N=1113) at the British Columbia Cancer Agency, Centre for the Southern Interior were invited by mail to participate in a standardized questionnaire related to their post-treatment health. Overall participation rates were calculated. In addition, demographics, access to broadband Internet services, and treatment modalities were compared between participants and nonparticipants. Results: Of the 1030 eligible invitees, 358 (358/1030, 34.7%) completed the online questionnaire. Participation rates were higher in individuals younger than age 60 when compared to those age 60 or older (42% vs 31%) and also for those living in urban areas compared with rural (37% vs 29%) and in those who received brachytherapy versus external beam radiotherapy (EBRT) (41% vs 31%). Better participation rates were seen in individuals who had access to Internet connectivity based on the different types of broadband services (DSL 35% for those with DSL connectivity vs 29% for those without DSL connectivity; cable 35% vs 32%; wireless 38% vs 26%). After adjusting for age, the model indicates that lack of access to wireless broadband connectivity, living in a rural area, and receiving EBRT were significant predictors of lower participation. Conclusions: This study demonstrates that participation rates vary in patient populations within the interior region of British Columbia, especially with older patients, those in rural areas, and those with limited access to quality Internet services. %M 26416584 %R 10.2196/resprot.3974 %U http://www.researchprotocols.org/2015/3/e115/ %U https://doi.org/10.2196/resprot.3974 %U http://www.ncbi.nlm.nih.gov/pubmed/26416584 %0 Journal Article %@ 2369-1999 %I JMIR Publications Inc. %V 1 %N 2 %P e9 %T Lifestyle Modification Experiences of African American Breast Cancer Survivors: A Needs Assessment %A Smith,Selina A %A Claridy,Mechelle D %A Smith Whitehead,Mary %A Sheats,Joyce Q %A Yoo,Wonsuk %A Alema-Mensah,Ernest A %A Ansa,Benjamin E-O %A Coughlin,Steven S %+ Institute of Public & Preventive Health Georgia Regents University, Department of Family Medicine, Medical College of Georgia, 1120 15th Street, CJ2300, Augusta, GA, 30912, United States, 1 706 721 1104, SESMITH@gru.edu %K African Americans %K breast cancer %K cancer survivors %K nutrition %K physical activity %D 2015 %7 17.08.2015 %9 Original Paper %J JMIR Cancer %G English %X 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. %M 28410162 %R 10.2196/cancer.4892 %U http://cancer.jmir.org/2015/2/e9/ %U https://doi.org/10.2196/cancer.4892 %U http://www.ncbi.nlm.nih.gov/pubmed/28410162 %0 Journal Article %@ 2369-1999 %I JMIR Publications Inc. %V 1 %N 1 %P e7 %T Efficacy of a Mobile-Enabled Web App (iCanFit) in Promoting Physical Activity Among Older Cancer Survivors: A Pilot Study %A Hong,Yan Alicia %A Goldberg,Daniel %A Ory,Marcia G %A Towne Jr,Samuel D %A Forjuoh,Samuel N %A Kellstedt,Debra %A Wang,Suojin %+ School of Public Health, Texas A&M University, 1266 TAMU, College Station, TX, 77843, United States, 1 979 436 9343, yhong@srph.tamhsc.edu %K physical activity %K mobile health %K older adults %K cancer survivors %K iCanFit %K pilot %D 2015 %7 26.6.2015 %9 Original Paper %J JMIR Cancer %G English %X Background: The benefits of physical activity for cancer survivors are well documented. However, few older cancer survivors are engaged in regular physical activity. Mobile technologies may be an effective method to deliver physical activity promotion programs for older cancer survivors. iCanFit, a mobile-enabled Web-based app, was developed based on formative research and usability testing. This app includes interactive features of physical activity, goal setting and tracking, and receiving personalized visual feedback. Objective: The aim of this study is to pilot test the initial efficacy of iCanFit. Methods: Older cancer survivors (N=30) were recruited online through our collaborative partnership with a cancer survivor's organization. After the participants completed an online baseline survey, they were asked to use the iCanFit website. Instructional videos on how to use the web app were available on the website. Participants were asked to complete a follow-up survey 2-3 months later. Participants’ physical activity, quality of life, and their experience with iCanFit were measured. Results: A total of 30 participants completed the baseline survey, and 26 of them (87%, 26/30) also completed a follow-up survey 2-3 months later. The median age of participants was 69 years (range 60-78). Participants’ quality of life and engagement in regular physical activity improved significantly after the use of iCanFit. Participants indicated a general affinity towards the key function “Goals” in iCanFit, which motivated continued activity. They also provided suggestions to further improve the app (eg, adding a reminder functionality, easier or alternative ways of entering activities). Conclusion: The interactive Web-based app iCanFit has demonstrated initial efficacy. Even though our study was limited by a small sample size, convenience sampling, and a short follow-up period, results suggest that using mobile tools to promote physical activity and healthy living among older cancer survivors holds promise. Next steps include refining iCanFit based on users’ feedback and developing versatile functionality to allow easier physical activity goal setting and tracking. We also call for more studies on developing and evaluating mobile and web apps for older cancer survivors. %M 28410158 %R 10.2196/cancer.4389 %U http://cancer.jmir.org/2015/1/e7/ %U https://doi.org/10.2196/cancer.4389 %U http://www.ncbi.nlm.nih.gov/pubmed/28410158 %0 Journal Article %@ 1929-0748 %I JMIR Publications Inc. %V 4 %N 1 %P e37 %T Developing a Healthy Web-Based Cookbook for Pediatric Cancer Patients and Survivors: Rationale and Methods %A Li,Rhea %A Raber,Margaret %A Chandra,Joya %+ MD Anderson Children’s Cancer Hospital, Department of Pediatrics-Research, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Unit 853, Houston, TX, 77030, United States, 1 713 563 5405, jchandra@mdanderson.org %K obesity %K pediatric cancer %K survivorship %K nutrition %K cooking %D 2015 %7 31.03.2015 %9 Original Paper %J JMIR Res Protoc %G English %X Background: Obesity has been a growing problem among children and adolescents in the United States for a number of decades. Childhood cancer survivors (CCS) are more susceptible to the downstream health consequences of obesity such as cardiovascular disease, endocrine issues, and risk of cancer recurrence due to late effects of treatment and suboptimal dietary and physical activity habits. Objective: The objective of this study was to document the development of a Web-based cookbook of healthy recipes and nutrition resources to help enable pediatric cancer patients and survivors to lead healthier lifestyles. Methods: The Web-based cookbook, named “@TheTable”, was created by a committee of researchers, a registered dietitian, patients and family members, a hospital chef, and community advisors and donors. Recipes were collected from several sources including recipe contests and social media. We incorporated advice from current patients, parents, and CCS. Results: Over 400 recipes, searchable by several categories and with accompanying nutritional information, are currently available on the website. In addition to healthy recipes, social media functionality and cooking videos are integrated into the website. The website also features nutrition information resources including nutrition and cooking tip sheets available on several subjects. Conclusions: The “@TheTable” website is a unique resource for promoting healthy lifestyles spanning pediatric oncology prevention, treatment, and survivorship. Through evaluations of the website’s current and future use, as well as incorporation into interventions designed to promote energy balance, we will continue to adapt and build this unique resource to serve cancer patients, survivors, and the general public. %M 25840596 %R 10.2196/resprot.3777 %U http://www.jmir.org/2015/1/e37/ %U https://doi.org/10.2196/resprot.3777 %U http://www.ncbi.nlm.nih.gov/pubmed/25840596 %0 Journal Article %@ 2291-5222 %I JMIR Publications Inc. %V 3 %N 1 %P e31 %T Apps Seeking Theories: Results of a Study on the Use of Health Behavior Change Theories in Cancer Survivorship Mobile Apps %A Vollmer Dahlke,Deborah %A Fair,Kayla %A Hong,Y Alicia %A Beaudoin,Christopher E %A Pulczinski,Jairus %A Ory,Marcia G %+ Texas A&M School of Public Health, Health Promotion and Community Health Sciences, Texas A&M University, 1266 TAMU, College Station, TX, TX, 77843, United States, 1 512 699 4493, Deborahvd@gmail.com %K mobile apps %K health behavior %K survivorship %K health promotion %K eHealth %K mobile health %D 2015 %7 27.03.2015 %9 Original Paper %J JMIR mHealth uHealth %G English %X Background: Thousands of mobile health apps are now available for use on mobile phones for a variety of uses and conditions, including cancer survivorship. Many of these apps appear to deliver health behavior interventions but may fail to consider design considerations based in human computer interface and health behavior change theories. Objective: This study is designed to assess the presence of and manner in which health behavior change and health communication theories are applied in mobile phone cancer survivorship apps. Methods: The research team selected a set of criteria-based health apps for mobile phones and assessed each app using qualitative coding methods to assess the application of health behavior change and communication theories. Each app was assessed using a coding derived from the taxonomy of 26 health behavior change techniques by Abraham and Michie with a few important changes based on the characteristics of mHealth apps that are specific to information processing and human computer interaction such as control theory and feedback systems. Results: A total of 68 mobile phone apps and games built on the iOS and Android platforms were coded, with 65 being unique. Using a Cohen’s kappa analysis statistic, the inter-rater reliability for the iOS apps was 86.1 (P<.001) and for the Android apps, 77.4 (P<.001). For the most part, the scores for inclusion of theory-based health behavior change characteristics in the iOS platform cancer survivorship apps were consistently higher than those of the Android platform apps. For personalization and tailoring, 67% of the iOS apps (24/36) had these elements as compared to 38% of the Android apps (12/32). In the area of prompting for intention formation, 67% of the iOS apps (34/36) indicated these elements as compared to 16% (5/32) of the Android apps. Conclusions: Mobile apps are rapidly emerging as a way to deliver health behavior change interventions that can be tailored or personalized for individuals. As these apps and games continue to evolve and include interactive and adaptive sensors and other forms of dynamic feedback, their content and interventional elements need to be grounded in human computer interface design and health behavior and communication theory and practice. %M 25830810 %R 10.2196/mhealth.3861 %U http://mhealth.jmir.org/2015/1/e31/ %U https://doi.org/10.2196/mhealth.3861 %U http://www.ncbi.nlm.nih.gov/pubmed/25830810 %0 Journal Article %@ 2369-1999 %I JMIR Publications Inc. %V 1 %N 1 %P e2 %T Availability of Information About Lifestyle for Cancer Survivors in England: A Review of Statutory and Charitable Sector Organizations and Cancer Centers %A Williams,Kate %A Fisher,Abigail %A Beeken,Rebecca J %A Wardle,Jane %+ Health Behaviour Research Centre, Department of Epidemiology and Public Health, University College London, Gower Street, London, WC1E 6BT, United Kingdom, 44 20 7679 1720, j.wardle@ucl.ac.uk %K cancer %K survivorship %K guideline %K health behavior %K lifestyle %K diet %K physical activity %K body weight %K smoking %K alcohol drinking %D 2015 %7 09.03.2015 %9 Original Paper %J JMIR Cancer %G English %X Background: Health behavior change following a cancer diagnosis has the potential to improve long-term outcomes. However, many patients do not receive professional advice about lifestyle and are therefore increasingly using the Internet to seek further information. The statutory and charitable sectors and cancer centers all play an important role in the provision of information and have been found to be favored by cancer survivors searching for information. However, to date there has been no systematic evaluation of the lifestyle information available online for cancer survivors. Objective: The purpose of this review was to identify the lifestyle information provided for cancer survivors by statutory and charitable sector organizations and cancer centers in the United Kingdom. We aimed to identify information on tobacco, physical activity, diet, weight, and alcohol designed for people who have been diagnosed with breast, prostate, or colorectal cancer. Methods: The National Health Service (NHS) website was the focus of the search for information provided by the statutory sector. Cancer centers were identified from the Organization of European Cancer Institutes and an Internet search, and charitable sector organizations were identified by searching the Charity Commission database. The three largest generic, breast, prostate, and colorectal cancer charitable organizations were included. A systematic search of the organizations was conducted to identify lifestyle information for cancer survivors. Results: Ten organizations had some lifestyle information for cancer survivors on their websites. The Christie NHS Foundation Trust, Macmillan Cancer Support, and Prostate Cancer UK had the most comprehensive guides, covering physical activity, diet, weight management, smoking, and alcohol. The NHS website did not provide any information but had a link to Cancer Research UK’s information about diet. Eight organizations suggested talking to a health professional before making any changes. Conclusions: The majority of organizations included in this review would benefit from updating their websites to include adequate information and advice about lifestyle for cancer survivors, or they risk cancer survivors turning to less reliable sources of information. Health professionals should be appropriately trained to deal with questions about lifestyle and to advise cancer survivors about lifestyle changes following their diagnosis. %M 28410175 %R 10.2196/cancer.3521 %U http://cancer.jmir.org/2015/1/e2/ %U https://doi.org/10.2196/cancer.3521 %U http://www.ncbi.nlm.nih.gov/pubmed/28410175