JMIR Publications

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  Innovations and Technology in Cancer...

  Nov 12, 2018

  Barriers and Facilitators of Using Sensored Medication Adherence Devices in a Diverse Sample of Patients With Multiple Myeloma: Qualitative Study

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  Authors List:

  • Alemseged Ayele Asfaw  
  • Connie H Yan  
  • Karen Sweiss  
  • Scott Wirth  
  • Victor H Ramirez  
  • Pritesh R Patel  
  • Lisa K Sharp  

  Abstract:

  Background: Many recently approved medications to manage multiple myeloma (MM) are oral, require supportive medications to prevent adverse effects, and are taken under complex schedules. Medication adherence is a concern; however, little attention has been directed toward understanding adherence in MM or associated barriers and facilitators. Advanced sensored medication devices (SMDs) offer opportunities to intervene; however, acceptability among patients with MM, particularly African American patients, is untested. Objective: This study aimed to explore patients’ (1) perceptions of their health before MM including experiences with chronic medications, (2) perceptions of adherence barriers and facilitators, and (3) attitudes toward using SMDs. Methods: An in-person, semistructured, qualitative interview was conducted with a convenience sample of patients being treated for MM. Patients were recruited from within an urban, minority-serving, academic medical center that had an established cancer center. A standardized interview guide included questions targeting medication use, attitudes, adherence, barriers, and facilitators. Demographics included the use of cell phone technology. Patients were shown 2 different pill bottles with sensor technology—Medication Event Monitoring System and the SMRxT bottle. After receiving information on the transmission ability of the bottles, patients were asked to discuss their reactions and concerns with the idea of using such a device. Medical records were reviewed to capture information on medication and diagnoses. The interviews were audio-recorded and transcribed. Interviews were independently coded by 2 members of the team with a third member providing guidance. Results: A total of 20 patients with a mean age of 56 years (median=59 years; range=29-71 years) participated in this study and 80% (16/20) were African American. In addition, 18 (90%, 18/20) owned a smartphone and 85% (17/20) were comfortable using the internet, text messaging, and cell phone apps. The average number of medications reported per patient was 13 medications (median=10; range=3-24). Moreover, 14 (70%, 14/20) patients reported missed doses for a range of reasons such as fatigue, feeling ill, a busy schedule, forgetting, or side effects. Interest in using an SMD ranged from great interest to complete lack of interest. Examples of concerns related to the SMDs included privacy issues, potential added cost, and the size of the bottle (ie, too large). Despite the concerns, 60% (12/20) of the patients expressed interest in trying a bottle in the future. Conclusions: Results identified numerous patient-reported barriers and facilitators to missed doses of oral anticancer therapy. Many appear to be potentially mutable if uncovered and addressed. SMDs may allow for capture of these data. Although patients expressed concerns with SMDs, most remained willing to use one. A feasibility trial with SMDs is planned.

  • JMIR Cancer 2018;4(2):e12

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  Innovations and Technology for Cancer...

  Nov 1, 2018

  Association Between Adherence to Cancer Screening and Knowledge of Screening Guidelines: Feasibility Study Linking Self-Reported Survey Data With Medical...

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  Authors List:

  • Aisha K Lofters  
  • Deanna Telner  
  • Sumeet Kalia  
  • Morgan Slater  

  Abstract:

  Background: It is possible that patients who are more aware of cancer screening guidelines may be more likely to adhere to them. Objective: The aim of this study was to determine whether screening knowledge was associated with the documented screening participation. We also assessed the feasibility and acceptability of linking electronic survey data with clinical data in the primary care setting. Methods: We conducted an electronic survey at 2 sites in Toronto, Canada. At one site, eligible patients were approached in the waiting room to complete the survey; at the second site, eligible patients were sent an email inviting them to participate. All participants were asked to consent to the linkage of their survey results with their electronic medical record. Results: Overall, 1683 participants responded to the survey—247 responded in the waiting room (response rate, 247/366, 67.5%), whereas 1436 responded through email (response rate, 1436/5779, 24.8%). More than 80% (199/247 and 1245/1436) of participants consented to linking their survey data to their medical record. Knowledge of cancer screening guidelines was generally low. Although the majority of participants were able to identify the recommended tests for breast and cervical screening, very few participants correctly identified the recommended age and frequency of screening, with a maximum of 22% (21/95) of screen-eligible women correctly answering all 3 questions for breast cancer screening. However, this low level of knowledge among patients was not significantly associated with screening uptake, particularly after adjustment for sociodemographic characteristics. Conclusions: Although knowledge of screening guidelines was low among patients in our study, this was not associated with screening participation. Participants were willing to link self-reported data with their medical record data, which has substantial implications for future research.

  • JMIR Cancer 2018;4(2):e10529

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  Mobile Apps for Cancer Care and...

  Oct 29, 2018

  Novel mHealth App to Deliver Geriatric Assessment-Driven Interventions for Older Adults With Cancer: Pilot Feasibility and Usability Study

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  Authors List:

  • Kah Poh Loh  
  • Erika Ramsdale  
  • Eva Culakova  
  • Jason H Mendler  
  • Jane L Liesveld  
  • Kristen M O'Dwyer  
  • Colin McHugh  
  • Maxence Gilles  
  • Terri Lloyd  
  • Molly Goodman  
  • Heidi D Klepin  
  • Karen M Mustian  
  • Rebecca Schnall  
  • Supriya G Mohile  

  Abstract:

  Background: Older patients with cancer are at an increased risk of adverse outcomes. A geriatric assessment (GA) is a compilation of reliable and validated tools to assess domains that are predictors of morbidity and mortality, and it can be used to guide interventions. However, the implementation of GA and GA-driven interventions is low due to resource and time limitations. GA-driven interventions delivered through a mobile app may support the complex needs of older patients with cancer and their caregivers. Objective: We aimed to evaluate the feasibility and usability of a novel app (TouchStream) and to identify barriers to its use. As an exploratory aim, we gathered preliminary data on symptom burden, health care utilization, and satisfaction. Methods: In a single-site pilot study, we included patients aged ≥65 years undergoing treatment for systemic cancer and their caregivers. TouchStream consists of a mobile app and a Web portal. Patients underwent a GA at baseline with the study team (on paper), and the results were used to guide interventions delivered through the app. A tablet preloaded with the app was provided for use at home for 4 weeks. Feasibility metrics included usability (system usability scale of >68 is considered above average), recruitment, retention (number of subjects consented who completed postintervention assessments), and percentage of days subjects used the app. For the last 8 patients, we assessed their symptom burden (severity and interference with 17-items scored from 0-10 where a higher score indicates worse symptoms) using a clinical symptom inventory, health care utilization from the electronic medical records, and satisfaction (6 items scored on a 5-point Likert Scale for both patients and caregivers where a higher score indicates higher satisfaction) using a modified satisfaction survey. Barriers to use were elicited through interviews. Results: A total of 18 patients (mean age 76.8, range 68-87) and 13 caregivers (mean age 69.8, range 38-81) completed the baseline assessment. Recruitment and retention rates were 67% and 80%, respectively. The mean SUS score was 74.0 for patients and 72.2 for caregivers. Mean percentage of days the TouchStream app was used was 78.7%. Mean symptom severity and interference scores were 1.6 and 2.8 at preintervention, and 0.9 and 1.5 at postintervention, respectively. There was a total of 27 clinic calls during the intervention period and 15 during the postintervention period (week 5-8). One patient was hospitalized during the intervention period (week 1-4) and two patients during the postintervention period (week 5-8). Mean satisfaction scores of patients and caregivers with the mobile app were 20.4 and 23.4, respectively. Barriers fell into 3 themes: general experience, design, and functionality. Conclusions: TouchStream is feasible and usable for older patients on cancer treatment and their caregivers. Future studies should evaluate the effects of the TouchStream on symptoms and health care utilization in a randomized fashion.

  • JMIR Cancer 2018;4(2):e10296

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  Innovations and Technology for Cancer...

  Jul 4, 2018

  Online Decision Support Tool for Personalized Cancer Symptom Checking in the Community (REACT): Acceptability, Feasibility, and Usability Study

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  Authors List:

  • Marzena Ewa Nieroda  
  • Artitaya Lophatananon  
  • Brian McMillan  
  • Li-Chia Chen  
  • John Hughes  
  • Rona Daniels  
  • James Clark  
  • Simon Rogers  
  • Kenneth Ross Muir  

  Abstract:

  Background: Improving cancer survival in the UK, despite recent significant gains, remains a huge challenge. This can be attributed to, at least in part, patient and diagnostic delays, when patients are unaware they are suffering from a cancerous symptom and therefore do not visit a general practitioner promptly and/or when general practitioners fail to investigate the symptom or refer promptly. To raise awareness of symptoms that may potentially be indicative of underlying cancer among members of the public a symptom-based risk assessment model (developed for medical practitioner use and currently only used by some UK general practitioners) was utilized to develop a risk assessment tool to be offered to the public in community settings. Such a tool could help individuals recognize a symptom, which may potentially indicate cancer, faster and reduce the time taken to visit to their general practitioner. In this paper we report results about the design and development of the REACT (Risk Estimation for Additional Cancer Testing) website, a tool to be used in a community setting allowing users to complete an online questionnaire and obtain personalized cancer symptom-based risk estimation. Objective: The objectives of this study are to evaluate (1) the acceptability of REACT among the public and health care practitioners, (2) the usability of the REACT website, (3) the presentation of personalized cancer risk on the website, and (4) potential approaches to adopt REACT into community health care services in the UK. Methods: Our research consisted of multiple stages involving members of the public (n=39) and health care practitioners (n=20) in the UK. Data were collected between June 2017 and January 2018. User views were collected by (1) the “think-aloud” approach when participants using the website were asked to talk about their perceptions and feelings in relation to the website, and (2) self-reporting of website experiences through open-ended questionnaires. Data collection and data analysis continued simultaneously, allowing for website iterations between different points of data collection. Results: The results demonstrate the need for such a tool. Participants suggest the best way to offer REACT is through a guided approach, with a health care practitioner (eg, pharmacist or National Health Service Health Check nurse) present during the process of risk evaluation. User feedback, which was generally consistent across members of public and health care practitioners, has been used to inform the development of the website. The most important aspects were: simplicity, ability to evaluate multiple cancers, content emphasizing an inviting community “feel,” use (when possible) of layperson language in the symptom screening questionnaire, and a robust and positive approach to cancer communication relying on visual risk representation both with affected individuals and the entire population at risk. Conclusions: This study illustrates the benefits of involving public and stakeholders in developing and implementing a simple cancer symptom check tool within community. It also offers insights and design suggestions for user-friendly interfaces of similar health care Web-based services, especially those involving personalized risk estimation.

  • JMIR Cancer 2018;4(2):e10073

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  Cancer and Clinical Trials

  Jun 26, 2018

  YouTube Videos as a Source of Information About Clinical Trials: Observational Study

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  Authors List:

  • Grace Clarke Hillyer  
  • Sarah A MacLean  
  • Melissa Beauchemin  
  • Corey H Basch  
  • Karen M Schmitt  
  • Leslie Segall  
  • Moshe Kelsen  
  • Frances L Brogan  
  • Gary K Schwartz  

  Abstract:

  Background: Clinical trials are essential to the advancement of cancer treatment but fewer than 5% of adult cancer patients enroll in a trial. A commonly cited barrier to participation is the lack of understanding about clinical trials. Objective: Since the internet is a popular source of health-related information and YouTube is the second most visited website in the world, we examined the content of the top 115 YouTube videos about clinical trials to evaluate clinical trial information available through this medium. Methods: YouTube videos posted prior to March 2017 were searched using selected keywords. A snowballing technique was used to identify videos wherein sequential screening of the autofill search results for each set of keywords was conducted. Video characteristics (eg, number of views and video length) were recorded. The content was broadly grouped as related to purpose, phases, design, safety and ethics, and participant considerations. Stepwise multivariable logistic regression analysis was conducted to assess associations between video type (cancer vs noncancer) and video characteristics and content. Results: In total, 115 videos were reviewed. Of these, 46/115 (40.0%) were cancer clinical trials videos and 69/115 (60.0%) were noncancer/general clinical trial videos. Most videos were created by health care organizations/cancer centers (34/115, 29.6%), were oriented toward patients (67/115, 58.3%) and the general public (68/115, 59.1%), and were informational (79/115, 68.7%); altruism was a common theme (31/115, 27.0%). Compared with noncancer videos, cancer clinical trials videos more frequently used an affective communication style and mentioned the benefits of participation. Cancer clinical trial videos were also much more likely to raise the issue of costs associated with participation (odds ratio [OR] 5.93, 95% CI 1.15-29.46) and advise patients to communicate with their physician about cancer clinical trials (OR 4.94, 95% CI 1.39-17.56). Conclusions: Collectively, YouTube clinical trial videos provided information on many aspects of trials; however, individual videos tended to focus on selected topics with varying levels of detail. Cancer clinical trial videos were more emotional in style and positive in tone and provided information on the important topics of cost and communication. Patients are encouraged to verify and supplement YouTube video information in consultations with their health care professionals to obtain a full and accurate picture of cancer clinical trials to make an adequately informed decision about participation.

  • JMIR Cancer 2018;4(1):e10060

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  Reviews on Innovations in Cancer

  Jun 8, 2018

  Use of Social Media in the Assessment of Relative Effectiveness: Explorative Review With Examples From Oncology

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  Authors List:

  • Rachel R.J. Kalf  
  • Amr Makady  
  • Renske M.T. ten Ham  
  • Kim Meijboom  
  • Wim G. Goettsch  
  • On Behalf Of IMI-GetReal Workpackage 1

  Abstract:

  Background: An element of health technology assessment constitutes assessing the clinical effectiveness of drugs, generally called relative effectiveness assessment. Little real-world evidence is available directly after market access, therefore randomized controlled trials are used to obtain information for relative effectiveness assessment. However, there is growing interest in using real-world data for relative effectiveness assessment. Social media may provide a source of real-world data. Objective: We assessed the extent to which social media-generated health data has provided insights for relative effectiveness assessment. Methods: An explorative literature review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines to identify examples in oncology where health data were collected using social media. Scientific and grey literature published between January 2010 and June 2016 was identified by four reviewers, who independently screened studies for eligibility and extracted data. A descriptive qualitative analysis was performed. Results: Of 1032 articles identified, eight were included: four articles identified adverse events in response to cancer treatment, three articles disseminated quality of life surveys, and one study assessed the occurrence of disease-specific symptoms. Several strengths of social media-generated health data were highlighted in the articles, such as efficient collection of patient experiences and recruiting patients with rare diseases. Conversely, limitations included validation of authenticity and presence of information and selection bias. Conclusions: Social media may provide a potential source of real-world data for relative effectiveness assessment, particularly on aspects such as adverse events, symptom occurrence, quality of life, and adherence behavior. This potential has not yet been fully realized and the degree of usefulness for relative effectiveness assessment should be further explored.

  • JMIR Cancer 2018;4(1):e11

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  Cancer Survivorship

  May 15, 2018

  Assessing Unmet Information Needs of Breast Cancer Survivors: Exploratory Study of Online Health Forums Using Text Classification and Retrieval

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  Authors List:

  • Susan McRoy  
  • Majid Rastegar-Mojarad  
  • Yanshan Wang  
  • Kathryn J. Ruddy  
  • Tufia C. Haddad  
  • Hongfang Liu  

  Abstract:

  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.

  • JMIR Cancer 2018;4(1):e10

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  Mobile Apps for Cancer Care and...

  May 14, 2018

  Acceptability of a Mobile Phone App for Measuring Time Use in Breast Cancer Survivors (Life in a Day): Mixed-Methods Study

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  Authors List:

  • Matthew Cole Ainsworth  
  • Dori Pekmezi  
  • Heather Bowles  
  • Diane Ehlers  
  • Edward McAuley  
  • Kerry S Courneya  
  • Laura Q Rogers  

  Abstract:

  Background: Advancements in mobile technology allow innovative data collection techniques such as measuring time use (ie, how individuals structure their time) for the purpose of improving health behavior change interventions. Objective: The aim of this study was to examine the acceptability of a 5-day trial of the Life in a Day mobile phone app measuring time use in breast cancer survivors to advance technology-based measurement of time use. Methods: Acceptability data were collected from participants (N=40; 100% response rate) using a self-administered survey after 5 days of Life in a Day use. Results: Overall, participants had a mean age of 55 years (SD 8) and completed 16 years of school (SD 2). Participants generally agreed that learning to use Life in a Day was easy (83%, 33/40) and would prefer to log activities using Life in a Day over paper-and-pencil diary (73%, 29/40). A slight majority felt that completing Life in a Day for 5 consecutive days was not too much (60%, 24/40) or overly time-consuming (68%, 27/40). Life in a Day was rated as easy to read (88%, 35/40) and navigate (70%, 32/40). Participants also agreed that it was easy to log activities using the activity timer at the start and end of an activity (90%, 35/39). Only 13% (5/40) downloaded the app on their personal phone, whereas 63% (19/30) of the remaining participants would have preferred to use their personal phone. Overall, 77% (30/39) of participants felt that the Life in a Day app was good or very good. Those who agreed that it was easy to edit activities were significantly more likely to be younger when compared with those who disagreed (mean 53 vs 58 years, P=.04). Similarly, those who agreed that it was easy to remember to log activities were more likely to be younger (mean 52 vs 60 years, P<.001). Qualitative coding of 2 open-ended survey items yielded 3 common themes for Life in a Day improvement (ie, convenience, user interface, and reminders). Conclusions: A mobile phone app is an acceptable time-use measurement modality. Improving convenience, user interface, and memory prompts while addressing the needs of older participants is needed to enhance app utility. Trial Registration: ClinicalTrials.gov NCT00929617; https://clinicaltrials.gov/ct2/show/NCT00929617 (Archived by WebCite at http://www.webcitation.org/6z2bZ4P7X)

  • JMIR Cancer 2018;4(1):e9

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  Innovations and Technology in Cancer...

  May 11, 2018

  Patient-Centered Mobile Health Data Management Solution for the German Health Care System (The DataBox Project)

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  Authors List:

  • Titus Josef Brinker  
  • Stefanie Rudolph  
  • Daniela Richter  
  • Christof von Kalle  

  Abstract:

  This article describes the DataBox project which offers a perspective of a new health data management solution in Germany. DataBox was initially conceptualized as a repository of individual lung cancer patient data (structured and unstructured). The patient is the owner of the data and is able to share his or her data with different stakeholders. Data is transferred, displayed, and stored online, but not archived. In the long run, the project aims at replacing the conventional method of paper- and storage-device-based handling of data for all patients in Germany, leading to better organization and availability of data which reduces duplicate diagnostic procedures, treatment errors, and enables the training as well as usage of artificial intelligence algorithms on large datasets.

  • JMIR Cancer 2018;4(1):e10160

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  Emotional, Social, Psychological...

  Apr 30, 2018

  A Web-Based Intervention to Reduce Distress After Prostate Cancer Treatment: Development and Feasibility of the Getting Down to Coping Program in Two...

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  Authors List:

  • Jane Cockle-Hearne  
  • Deborah Barnett  
  • James Hicks  
  • Mhairi Simpson  
  • Isabel White  
  • Sara Faithfull  

  Abstract:

  Background: Distress after prostate cancer treatment is a substantial burden for up to one-third of men diagnosed. Physical and emotional symptoms and health service use can intensify, yet men are reticent to accept support. To provide accessible support that can be cost effectively integrated into care pathways, we developed a unique, Web-based, self-guided, cognitive-behavior program incorporating filmed and interactive peer support. Objective: To assess feasibility of the intervention among men experiencing distress after prostate cancer treatment. Demand, acceptability, change in distress and self-efficacy, and challenges for implementation in clinical practice were measured. Methods: A pre-post, within-participant comparison, mixed-methods research design was followed. Phase I and II were conducted in primary care psychological service and secondary care cancer service, respectively. Men received clinician-generated postal invitations: phase I, 432 men diagnosed <5 years; phase II, 606 men diagnosed <3.5 years. Consent was Web-based. Men with mild and moderate distress were enrolled. Web-based assessment included demographic, disease, treatment characteristics; distress (General Health Questionnaire-28); depression (Patient Health Questionnaire-9); anxiety (General Anxiety Disorder Scale-7); self-efficacy (Self-Efficacy for Symptom Control Inventory); satisfaction (author-generated, Likert-type questionnaire). Uptake and adherence were assessed with reference to the persuasive systems design model. Telephone interviews explored participant experience (phase II, n=10); interviews with health care professionals (n=3) explored implementation issues. Results: A total of 135 men consented (phase I, 61/432, 14.1%; phase II, 74/606, 12.2%); from 96 eligible men screened for distress, 32% (30/96) entered the intervention (phase I, n=10; phase II, n=20). Twenty-four completed the Web-based program and assessments (phase I, n=8; phase II, n=16). Adherence for phase I and II was module completion rate 63% (mean 2.5, SD 1.9) versus 92% (mean 3.7, SD 1.0); rate of completing cognitive behavior therapy exercises 77% (mean 16.1, SD 6.2) versus 88% (mean 18.6, SD 3.9). Chat room activity occurred among 63% (5/8) and 75% (12/16) of men, respectively. In phase I, 75% (6/8) of men viewed all the films; in phase II, the total number of unique views weekly was 16, 11, 11, and 10, respectively. The phase II mood diary was completed by 100% (16/16) of men. Satisfaction was high for the program and films. Limited efficacy testing indicated improvement in distress baseline to post intervention: phase I, P=.03, r=−.55; phase II, P=.001, r=−.59. Self-efficacy improved for coping P=.02, r=−.41. Service assessment confirmed ease of assimilation into clinical practice and clarified health care practitioner roles. Conclusions: The Web-based program is acceptable and innovative in clinical practice. It was endorsed by patients and has potential to positively impact the experience of men with distress after prostate cancer treatment. It can potentially be delivered in a stepped model of psychological support in primary or secondary care. Feasibility evidence is compelling, supporting further evaluative research to determine clinical and cost effectiveness.

  • JMIR Cancer 2018;4(1):e8

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  Breast Cancer

  Apr 13, 2018

  Development of a Web-based Family Intervention for BRCA Carriers and Their Biological Relatives: Acceptability, Feasibility, and Usability Study

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  Authors List:

  • Maria C Katapodi  
  • Miyeon Jung  
  • Ann M Schafenacker  
  • Kara J Milliron  
  • Kari E Mendelsohn-Victor  
  • Sofia D Merajver  
  • Laurel L Northouse  

  Abstract:

  Background: Carriers of breast cancer gene (BRCA) mutations are asked to communicate genetic test results to their biological relatives to increase awareness of cancer risk and promote use of genetic services. This process is highly variable from family to family. Interventions that support communication of genetic test results, coping, and offer decision support in families harboring a pathogenic variant may contribute to effective management of hereditary cancer. Objective: The aim of this paper was to describe the development of the Family Gene Toolkit, a Web-based intervention targeting BRCA carriers and untested blood relatives, designed to enhance coping, family communication, and decision making. Methods: We present findings from focus groups regarding intervention acceptability and participant satisfaction and from a pre-post pilot study with random allocation to a wait-listed control group regarding intervention feasibility and usability. Results: The Family Gene Toolkit was developed by a multidisciplinary team as a psycho-educational and skills-building intervention. It includes two live webinar sessions and a follow-up phone call guided by a certified genetic counselor and a master’s prepared oncology nurse. Each live webinar includes two modules (total four modules) presenting information about BRCA mutations, a decision aid for genetic testing, and two skill-building modules for effective coping and family communication. Participants in focus groups (n=11) were highly satisfied with the intervention, reporting it to be useful and describing clearly the important issues. From the 12 dyads recruited in the pre-post pilot study (response rate 12/52, 23%), completion rate was 71% (10/14) for intervention and 40% (4/10) for wait-listed control groups. Conclusions: Acceptability and satisfaction with the Family Gene Toolkit is high. On the basis of the findings from usability and feasibility testing, modifications on timing, delivery mode, and recruitment methods have been implemented. Trial Registration: ClinicalTrials.gov NCT02154633; https://clinicaltrials.gov/ct2/show/NCT02154633 (Archived by WebCite at http://www.webcitation.org/6yYNvLPjv)

  • JMIR Cancer 2018;4(1):e7

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  Reviews on Innovations in Cancer

  Apr 3, 2018

  Analysis of Content Shared in Online Cancer Communities: Systematic Review

  View Authors View Abstract

  Authors List:

  • Mies C van Eenbergen  
  • Lonneke V van de Poll-Franse  
  • Emiel Krahmer  
  • Suzan Verberne  
  • Floortje Mols  

  Abstract:

  Background: The content that cancer patients and their relatives (ie, posters) share in online cancer communities has been researched in various ways. In the past decade, researchers have used automated analysis methods in addition to manual coding methods. Patients, providers, researchers, and health care professionals can learn from experienced patients, provided that their experience is findable. Objective: The aim of this study was to systematically review all relevant literature that analyzes user-generated content shared within online cancer communities. We reviewed the quality of available research and the kind of content that posters share with each other on the internet. Methods: A computerized literature search was performed via PubMed (MEDLINE), PsycINFO (5 and 4 stars), Cochrane Central Register of Controlled Trials, and ScienceDirect. The last search was conducted in July 2017. Papers were selected if they included the following terms: (cancer patient) and (support group or health communities) and (online or internet). We selected 27 papers and then subjected them to a 14-item quality checklist independently scored by 2 investigators. Results: The methodological quality of the selected studies varied: 16 were of high quality and 11 were of adequate quality. Of those 27 studies, 15 were manually coded, 7 automated, and 5 used a combination of methods. The best results can be seen in the papers that combined both analytical methods. The number of analyzed posts ranged from 200 to 1,500,000; the number of analyzed posters ranged from 75 to 90,000. The studies analyzing large numbers of posts mainly related to breast cancer, whereas those analyzing small numbers were related to other types of cancers. A total of 12 studies involved some or entirely automatic analysis of the user-generated content. All the authors referred to two main content categories: informational support and emotional support. In all, 15 studies reported only on the content, 6 studies explicitly reported on content and social aspects, and 6 studies focused on emotional changes. Conclusions: In the future, increasing amounts of user-generated content will become available on the internet. The results of content analysis, especially of the larger studies, give detailed insights into patients’ concerns and worries, which can then be used to improve cancer care. To make the results of such analyses as usable as possible, automatic content analysis methods will need to be improved through interdisciplinary collaboration.

  • JMIR Cancer 2018;4(1):e6

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