@Article{info:doi/10.2196/cancer.7926,
author="van Eenbergen, C. Mies
and van de Poll-Franse, V. Lonneke
and Krahmer, Emiel
and Verberne, Suzan
and Mols, Floortje",
title="Analysis of Content Shared in Online Cancer Communities: Systematic Review",
journal="JMIR Cancer",
year="2018",
month="Apr",
day="03",
volume="4",
number="1",
pages="e6",
keywords="cancer",
keywords="survivors",
keywords="support groups",
keywords="internet",
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. ",
doi="10.2196/cancer.7926",
url="http://cancer.jmir.org/2018/1/e6/",
url="http://www.ncbi.nlm.nih.gov/pubmed/29615384"
}


@Article{info:doi/10.2196/cancer.7952,
author="Kalf, RJ Rachel
and Makady, Amr
and ten Ham, MT Renske
and Meijboom, Kim
and Goettsch, G. Wim
and ",
title="Use of Social Media in the Assessment of Relative Effectiveness: Explorative Review With Examples From Oncology",
journal="JMIR Cancer",
year="2018",
month="Jun",
day="08",
volume="4",
number="1",
pages="e11",
keywords="social media",
keywords="relative effectiveness",
keywords="real-world data",
keywords="patient reported outcomes",
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. ",
doi="10.2196/cancer.7952",
url="http://cancer.jmir.org/2018/1/e11/",
url="http://www.ncbi.nlm.nih.gov/pubmed/29884607"
}


@Article{info:doi/10.2196/10160,
author="Brinker, Josef Titus
and Rudolph, Stefanie
and Richter, Daniela
and von Kalle, Christof",
title="Patient-Centered Mobile Health Data Management Solution for the German Health Care System (The DataBox Project)",
journal="JMIR Cancer",
year="2018",
month="May",
day="11",
volume="4",
number="1",
pages="e10160",
keywords="medical informatics",
keywords="health data management",
doi="10.2196/10160",
url="http://cancer.jmir.org/2018/1/e10160/",
url="http://www.ncbi.nlm.nih.gov/pubmed/29752255"
}


@Article{info:doi/10.2196/cancer.7515,
author="Jabour, M. Abdulrahman
and Dixon, E. Brian
and Jones, F. Josette
and Haggstrom, A. David",
title="Toward Timely Data for Cancer Research: Assessment and Reengineering of the Cancer Reporting Process",
journal="JMIR Cancer",
year="2018",
month="Mar",
day="01",
volume="4",
number="1",
pages="e4",
keywords="neoplasms",
keywords="registries",
keywords="SEER program",
keywords="workflow",
keywords="computer simulation",
keywords="data collection",
keywords="epidemiological monitoring",
abstract="Background: Cancer registries systematically collect cancer-related data to support cancer surveillance activities. However, cancer data are often unavailable for months to years after diagnosis, limiting its utility. Objective: The objective of this study was to identify the barriers to rapid cancer reporting and identify ways to shorten the turnaround time. Methods: Certified cancer registrars reporting to the Indiana State Department of Health cancer registry participated in a semistructured interview. Registrars were asked to describe the reporting process, estimate the duration of each step, and identify any barriers that may impact the reporting speed. Qualitative data analysis was performed with the intent of generating recommendations for workflow redesign. The existing and redesigned workflows were simulated for comparison. Results: Barriers to rapid reporting included access to medical records from multiple facilities and the waiting period from diagnosis to treatment. The redesigned workflow focused on facilitating data sharing between registrars and applying a more efficient queuing technique while registrars await the delivery of treatment. The simulation results demonstrated that our recommendations to reduce the waiting period and share information could potentially improve the average reporting speed by 87 days. Conclusions: Knowing the time elapsing at each step within the reporting process helps in prioritizing the needs and estimating the impact of future interventions. Where some previous studies focused on automating some of the cancer reporting activities, we anticipate much shorter reporting by leveraging health information technologies to target this waiting period. ",
doi="10.2196/cancer.7515",
url="http://cancer.jmir.org/2018/1/e4/",
url="http://www.ncbi.nlm.nih.gov/pubmed/29496653"
}


@Article{info:doi/10.2196/cancer.8250,
author="Wilson, Carlene
and Flight, Ingrid
and Zajac, T. Ian
and Turnbull, Deborah
and Young, P. Graeme
and Olver, Ian",
title="Web-Based Communication Strategies Designed to Improve Intention to Minimize Risk for Colorectal Cancer: Randomized Controlled Trial",
journal="JMIR Cancer",
year="2018",
month="Feb",
day="12",
volume="4",
number="1",
pages="e2",
keywords="internet",
keywords="randomized controlled trial",
keywords="information seeking behavior",
keywords="consumer health information",
keywords="health communication",
abstract="Background: People seek information on the Web for managing their colorectal cancer (CRC) risk but retrieve much personally irrelevant material. Targeting information pertinent to this cohort via a frequently asked question (FAQ) format could improve outcomes. Objective: We identified and prioritized colorectal cancer information for men and women aged 35 to 74 years (study 1) and built a website containing FAQs ordered by age and gender. In study 2, we conducted a randomized controlled trial (RCT) to test whether targeted FAQs were more influential on intention to act on CRC risk than the same information accessed via a generic topic list. Secondary analyses compared preference for information delivery, usability, relevance, and likelihood of recommendation of FAQ and LIST websites. Methods: Study 1 determined the colorectal cancer information needs of Australians (N=600) by sex and age group (35-49, 50-59, 60-74) through a Web-based survey. Free-text responses were categorized as FAQs: the top 5 issues within each of the 6 cohorts were identified. Study 2 (N=240) compared the impact of presentation as targeted FAQ links to information with links presented as a generic list (LIST) and a CONTROL (no information) condition. We also tested preference for presentation of access to information as FAQ or LIST by adding a CHOICE condition (a self-selected choice of FAQs or a list of information topics). Results: Study 1 showed considerable consistency in information priorities among all 6 cohorts with 2 main concerns: treatment of CRC and risk factors. Some differences included a focus on general risk factors, excluding diet and lifestyle, in the younger cohort, and on the existence of a test for CRC in the older cohorts. Study 2 demonstrated that, although respondents preferred information access ordered by FAQs over a list, presentation in this format had limited impact on readiness to act on colorectal cancer risk compared with the list or a no-information control (P=.06). Both FAQ and LIST were evaluated as equally usable. Those aged 35 to 49 years rated the information less relevant to them and others in their age group, and information ordered by FAQs was rated, across all age groups and both sexes, as less relevant to people outside the age group targeted within the FAQs. Conclusions: FAQs are preferred over a list as a strategy for presenting access to information about CRC. They may improve intention to act on risk, although further research is required. Future research should aim to identify better the characteristics of information content and presentation that optimize perceived relevance and fully engage the target audience. Trial Registration: Australian New Zealand Clinical Trials Registry: ACTRN12618000137291; https://www.anzctr.org. au/Trial/Registration/TrialReview.aspx?id=374129 (Archived by WebCite at http://www.webcitation.org/6x2Mr6rPC) ",
doi="10.2196/cancer.8250",
url="http://cancer.jmir.org/2018/1/e2/",
url="http://www.ncbi.nlm.nih.gov/pubmed/29434013"
}


@Article{info:doi/10.2196/cancer.8993,
author="Alpert, M. Jordan
and Morris, B. Bonny
and Thomson, D. Maria
and Matin, Khalid
and Brown, F. Richard",
title="Implications of Patient Portal Transparency in Oncology: Qualitative Interview Study on the Experiences of Patients, Oncologists, and Medical Informaticists",
journal="JMIR Cancer",
year="2018",
month="Mar",
day="26",
volume="4",
number="1",
pages="e5",
keywords="qualitative research",
keywords="electronic health record",
keywords="patient portals",
keywords="physician patient relationship",
keywords="health communication",
abstract="Background: Providing patients with unrestricted access to their electronic medical records through patient portals has impacted patient-provider communication and patients' personal health knowledge. However, little is known about how patient portals are used in oncology. Objective: The aim of this study was to understand attitudes of the portal's adoption for oncology and to identify the advantages and disadvantages of using the portal to communicate and view medical information. Methods: In-depth semistructured interviews were conducted with 60 participants: 35 patients, 13 oncologists, and 12 medical informaticists. Interviews were recorded, transcribed, and thematically analyzed to identify critical incidents and general attitudes encountered by participants. Results: Two primary themes were discovered: (1) implementation practices influence attitudes, in which the decision-making and execution process of introducing portals throughout the hospital did not include the input of oncologists. Lack of oncologists' involvement led to a lack of knowledge about portal functionality, such as not knowing the time period when test results would be disclosed to patients; (2) perceptions of portals as communication tools varies by user type, meaning that each participant group (patients, oncologists, and medical informaticists) had varied opinions about how the portal should be used to transmit and receive information. Oncologists and medical informaticists had difficulty understanding one another's culture and communication processes in their fields, while patients had preferences for how they would like to receive communication, but it largely depended upon the type of test being disclosed. Conclusions: The majority of patients (54\%, 19/35) who participated in this study viewed lab results or scan reports via the portal before being contacted by a clinician. Most were relatively comfortable with this manner of disclosure but still preferred face-to-face or telephone communication. Findings from this study indicate that portal education is needed for both patients and oncologists, especially when portals are implemented across entire health systems since highly specialized areas of medicine may have unique needs and uses. Patient portals in oncology can potentially alter the way diagnoses are delivered and how patients and oncologists communicate. Therefore, communication about the portal should be established during initial consultations so patients can decide whether they want to be informed in such a manner. ",
doi="10.2196/cancer.8993",
url="http://cancer.jmir.org/2018/1/e5/",
url="http://www.ncbi.nlm.nih.gov/pubmed/29581090"
}


@Article{info:doi/10.2196/cancer.8430,
author="Kinner, M. Ellen
and Armer, S. Jessica
and McGregor, A. Bonnie
and Duffecy, Jennifer
and Leighton, Susan
and Corden, E. Marya
and Gauthier Mullady, Janine
and Penedo, J. Frank
and Lutgendorf, K. Susan",
title="Internet-Based Group Intervention for Ovarian Cancer Survivors: Feasibility and Preliminary Results",
journal="JMIR Cancer",
year="2018",
month="Jan",
day="15",
volume="4",
number="1",
pages="e1",
keywords="ovarian cancer",
keywords="quality of life",
keywords="feasibility studies",
keywords="eHealth",
keywords="psychological stress",
abstract="Background: Development of psychosocial group interventions for ovarian cancer survivors has been limited. Drawing from elements of cognitive-behavioral stress management (CBSM), mindfulness-based stress reduction (MBSR), and acceptance and commitment therapy (ACT), we developed and conducted preliminary testing of an Internet-based group intervention tailored specifically to meet the needs of ovarian cancer survivors. The Internet-based platform facilitated home delivery of the psychosocial intervention to a group of cancer survivors for whom attending face-to-face programs could be difficult given their physical limitations and the small number of ovarian cancer survivors at any one treatment site. Objective: The aim of this study was to develop, optimize, and assess the usability, acceptability, feasibility, and preliminary intended effects of an Internet-based group stress management intervention for ovarian cancer survivors delivered via a tablet or laptop. Methods: In total, 9 ovarian cancer survivors provided feedback during usability testing. Subsequently, 19 survivors participated in 5 waves of field testing of the 10-week group intervention led by 2 psychologists. The group met weekly for 2 hours via an Internet-based videoconference platform. Structured interviews and weekly evaluations were used to elicit feedback on the website and intervention content. Before and after the intervention, measures of mood, quality of life (QOL), perceived stress, sleep, and social support were administered. Paired t tests were used to examine changes in psychosocial measures over time. Results: Usability results indicated that participants (n=9) performed basic tablet functions quickly with no errors and performed website functions easily with a low frequency of errors. In the field trial (n=19), across 5 groups, the 10-week intervention was well attended. Perceived stress (P=.03) and ovarian cancer-specific QOL (P=.01) both improved significantly during the course of the intervention. Trends toward decreased distress (P=.18) and greater physical (P=.05) and functional well-being (P=.06) were also observed. Qualitative interviews revealed that the most common obstacles participants experienced were technical issues and the time commitment for practicing the techniques taught in the program. Participants reported that the intervention helped them to overcome a sense of isolation and that they appreciated the ability to participate at home. Conclusions: An Internet-based group intervention tailored specifically for ovarian cancer survivors is highly usable and acceptable with moderate levels of feasibility. Preliminary psychosocial outcomes indicate decreases in perceived stress and improvements in ovarian cancer-specific QOL following the intervention. A randomized clinical trial is needed to demonstrate the efficacy of this promising intervention for ovarian cancer survivors. ",
doi="10.2196/cancer.8430",
url="http://cancer.jmir.org/2018/1/e1/",
url="http://www.ncbi.nlm.nih.gov/pubmed/29335233"
}


@Article{info:doi/10.2196/cancer.8918,
author="Cockle-Hearne, Jane
and Barnett, Deborah
and Hicks, James
and Simpson, Mhairi
and White, Isabel
and Faithfull, Sara",
title="A Web-Based Intervention to Reduce Distress After Prostate Cancer Treatment: Development and Feasibility of the Getting Down to Coping Program in Two Different Clinical Settings",
journal="JMIR Cancer",
year="2018",
month="Apr",
day="30",
volume="4",
number="1",
pages="e8",
keywords="prostatic neoplasms",
keywords="Internet",
keywords="self-management",
keywords="cognitive behavior therapy",
keywords="primary health care",
keywords="secondary care",
abstract="Background: Distress after prostate cancer treatment is a substantial burden for up to one-third of men diagnosed. Physical and emotional symptoms and health service use can intensify, yet men are reticent to accept support. To provide accessible support that can be cost effectively integrated into care pathways, we developed a unique, Web-based, self-guided, cognitive-behavior program incorporating filmed and interactive peer support. Objective: To assess feasibility of the intervention among men experiencing distress after prostate cancer treatment. Demand, acceptability, change in distress and self-efficacy, and challenges for implementation in clinical practice were measured. Methods: A pre-post, within-participant comparison, mixed-methods research design was followed. Phase I and II were conducted in primary care psychological service and secondary care cancer service, respectively. Men received clinician-generated postal invitations: phase I, 432 men diagnosed <5 years; phase II, 606 men diagnosed <3.5 years. Consent was Web-based. Men with mild and moderate distress were enrolled. Web-based assessment included demographic, disease, treatment characteristics; distress (General Health Questionnaire-28); depression (Patient Health Questionnaire-9); anxiety (General Anxiety Disorder Scale-7); self-efficacy (Self-Efficacy for Symptom Control Inventory); satisfaction (author-generated, Likert-type questionnaire). Uptake and adherence were assessed with reference to the persuasive systems design model. Telephone interviews explored participant experience (phase II, n=10); interviews with health care professionals (n=3) explored implementation issues. Results: A total of 135 men consented (phase I, 61/432, 14.1\%; phase II, 74/606, 12.2\%); from 96 eligible men screened for distress, 32\% (30/96) entered the intervention (phase I, n=10; phase II, n=20). Twenty-four completed the Web-based program and assessments (phase I, n=8; phase II, n=16). Adherence for phase I and II was module completion rate 63\% (mean 2.5, SD 1.9) versus 92\% (mean 3.7, SD 1.0); rate of completing cognitive behavior therapy exercises 77\% (mean 16.1, SD 6.2) versus 88\% (mean 18.6, SD 3.9). Chat room activity occurred among 63\% (5/8) and 75\% (12/16) of men, respectively. In phase I, 75\% (6/8) of men viewed all the films; in phase II, the total number of unique views weekly was 16, 11, 11, and 10, respectively. The phase II mood diary was completed by 100\% (16/16) of men. Satisfaction was high for the program and films. Limited efficacy testing indicated improvement in distress baseline to post intervention: phase I, P=.03, r=?.55; phase II, P=.001, r=?.59. Self-efficacy improved for coping P=.02, r=?.41. Service assessment confirmed ease of assimilation into clinical practice and clarified health care practitioner roles. Conclusions: The Web-based program is acceptable and innovative in clinical practice. It was endorsed by patients and has potential to positively impact the experience of men with distress after prostate cancer treatment. It can potentially be delivered in a stepped model of psychological support in primary or secondary care. Feasibility evidence is compelling, supporting further evaluative research to determine clinical and cost effectiveness. ",
doi="10.2196/cancer.8918",
url="http://cancer.jmir.org/2018/1/e8/",
url="http://www.ncbi.nlm.nih.gov/pubmed/29712628"
}


@Article{info:doi/10.2196/cancer.9050,
author="McRoy, Susan
and Rastegar-Mojarad, Majid
and Wang, Yanshan
and Ruddy, J. Kathryn
and Haddad, C. Tufia
and Liu, Hongfang",
title="Assessing Unmet Information Needs of Breast Cancer Survivors: Exploratory Study of Online Health Forums Using Text Classification and Retrieval",
journal="JMIR Cancer",
year="2018",
month="May",
day="15",
volume="4",
number="1",
pages="e10",
keywords="online health forum",
keywords="automated content analysis",
keywords="text retrieval",
keywords="text classification",
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. ",
doi="10.2196/cancer.9050",
url="http://cancer.jmir.org/2018/1/e10/",
url="http://www.ncbi.nlm.nih.gov/pubmed/29764801"
}


@Article{info:doi/10.2196/cancer.9114,
author="Rosen, L. Brittany
and Bishop, M. James
and McDonald, L. Skye
and Kahn, A. Jessica
and Kreps, L. Gary",
title="Quality of Web-Based Educational Interventions for Clinicians on Human Papillomavirus Vaccine: Content and Usability Assessment",
journal="JMIR Cancer",
year="2018",
month="Feb",
day="16",
volume="4",
number="1",
pages="e3",
keywords="papillomavirus vaccines",
keywords="internet",
keywords="program evaluation",
keywords="health personnel",
abstract="Background: Human papillomavirus (HPV) vaccination rates fall far short of Healthy People 2020 objectives. A leading reason is that clinicians do not recommend the vaccine consistently and strongly to girls and boys in the age group recommended for vaccination. Although Web-based HPV vaccine educational interventions for clinicians have been created to promote vaccination recommendations, rigorous evaluations of these interventions have not been conducted. Such evaluations are important to maximize the efficacy of educational interventions in promoting clinician recommendations for HPV vaccination. Objective: The objectives of our study were (1) to expand previous research by systematically identifying HPV vaccine Web-based educational interventions developed for clinicians and (2) to evaluate the quality of these Web-based educational interventions as defined by access, content, design, user evaluation, interactivity, and use of theory or models to create the interventions. Methods: Current HPV vaccine Web-based educational interventions were identified from general search engines (ie, Google), continuing medical education search engines, health department websites, and professional organization websites. Web-based educational interventions were included if they were created for clinicians (defined as individuals qualified to deliver health care services, such as physicians, clinical nurses, and school nurses, to patients aged 9 to 26 years), delivered information about the HPV vaccine and how to increase vaccination rates, and provided continuing education credits. The interventions' content and usability were analyzed using 6 key indicators: access, content, design, evaluation, interactivity, and use of theory or models. Results: A total of 21 interventions were identified, out of which 7 (33\%) were webinars, 7 (33\%) were videos or lectures, and 7 (33\%) were other (eg, text articles, website modules). Of the 21 interventions, 17 (81\%) identified the purpose of the intervention, 12 (57\%) provided the date that the information had been updated (7 of these were updated within the last 6 months), 14 (67\%) provided the participants with the opportunity to provide feedback on the intervention, and 5 (24\%) provided an interactive component. None of the educational interventions explicitly stated that a theory or model was used to develop the intervention. Conclusions: This analysis demonstrates that a substantial proportion of Web-based HPV vaccine educational interventions has not been developed using established health education and design principles. Interventions designed using these principles may increase strong and consistent HPV vaccination recommendations by clinicians. ",
doi="10.2196/cancer.9114",
url="http://cancer.jmir.org/2018/1/e3/",
url="http://www.ncbi.nlm.nih.gov/pubmed/29453187"
}


@Article{info:doi/10.2196/10060,
author="Hillyer, Clarke Grace
and MacLean, A. Sarah
and Beauchemin, Melissa
and Basch, H. Corey
and Schmitt, M. Karen
and Segall, Leslie
and Kelsen, Moshe
and Brogan, L. Frances
and Schwartz, K. Gary",
title="YouTube Videos as a Source of Information About Clinical Trials: Observational Study",
journal="JMIR Cancer",
year="2018",
month="Jun",
day="26",
volume="4",
number="1",
pages="e10060",
keywords="clinical trial",
keywords="cancer clinical trial",
keywords="social media",
keywords="internet",
keywords="YouTube videos",
keywords="health information",
abstract="Background: Clinical trials are essential to the advancement of cancer treatment but fewer than 5\% of adult cancer patients enroll in a trial. A commonly cited barrier to participation is the lack of understanding about clinical trials. Objective: Since the internet is a popular source of health-related information and YouTube is the second most visited website in the world, we examined the content of the top 115 YouTube videos about clinical trials to evaluate clinical trial information available through this medium. Methods: YouTube videos posted prior to March 2017 were searched using selected keywords. A snowballing technique was used to identify videos wherein sequential screening of the autofill search results for each set of keywords was conducted. Video characteristics (eg, number of views and video length) were recorded. The content was broadly grouped as related to purpose, phases, design, safety and ethics, and participant considerations. Stepwise multivariable logistic regression analysis was conducted to assess associations between video type (cancer vs noncancer) and video characteristics and content. Results: In total, 115 videos were reviewed. Of these, 46/115 (40.0\%) were cancer clinical trials videos and 69/115 (60.0\%) were noncancer/general clinical trial videos. Most videos were created by health care organizations/cancer centers (34/115, 29.6\%), were oriented toward patients (67/115, 58.3\%) and the general public (68/115, 59.1\%), and were informational (79/115, 68.7\%); altruism was a common theme (31/115, 27.0\%). Compared with noncancer videos, cancer clinical trials videos more frequently used an affective communication style and mentioned the benefits of participation. Cancer clinical trial videos were also much more likely to raise the issue of costs associated with participation (odds ratio [OR] 5.93, 95\% CI 1.15-29.46) and advise patients to communicate with their physician about cancer clinical trials (OR 4.94, 95\% CI 1.39-17.56). Conclusions: Collectively, YouTube clinical trial videos provided information on many aspects of trials; however, individual videos tended to focus on selected topics with varying levels of detail. Cancer clinical trial videos were more emotional in style and positive in tone and provided information on the important topics of cost and communication. Patients are encouraged to verify and supplement YouTube video information in consultations with their health care professionals to obtain a full and accurate picture of cancer clinical trials to make an adequately informed decision about participation. ",
doi="10.2196/10060",
url="http://cancer.jmir.org/2018/1/e10060/",
url="http://www.ncbi.nlm.nih.gov/pubmed/29945855"
}


@Article{info:doi/10.2196/cancer.8951,
author="Ainsworth, Cole Matthew
and Pekmezi, Dori
and Bowles, Heather
and Ehlers, Diane
and McAuley, Edward
and Courneya, S. Kerry
and Rogers, Q. Laura",
title="Acceptability of a Mobile Phone App for Measuring Time Use in Breast Cancer Survivors (Life in a Day): Mixed-Methods Study",
journal="JMIR Cancer",
year="2018",
month="May",
day="14",
volume="4",
number="1",
pages="e9",
keywords="cancer",
keywords="technology",
keywords="time management",
keywords="mHealth",
keywords="physical activity",
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) ",
doi="10.2196/cancer.8951",
url="http://cancer.jmir.org/2018/1/e9/",
url="http://www.ncbi.nlm.nih.gov/pubmed/29759953"
}


@Article{info:doi/10.2196/cancer.9210,
author="Katapodi, C. Maria
and Jung, Miyeon
and Schafenacker, M. Ann
and Milliron, J. Kara
and Mendelsohn-Victor, E. Kari
and Merajver, D. Sofia
and Northouse, L. Laurel",
title="Development of a Web-based Family Intervention for BRCA Carriers and Their Biological Relatives: Acceptability, Feasibility, and Usability Study",
journal="JMIR Cancer",
year="2018",
month="Apr",
day="13",
volume="4",
number="1",
pages="e7",
keywords="BRCA families",
keywords="family-based intervention study",
keywords="Web-based intervention study",
keywords="psycho-educational and skills-building intervention study",
keywords="communication and coping",
keywords="patient decision-aid",
keywords="genetic testing",
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) ",
doi="10.2196/cancer.9210",
url="http://cancer.jmir.org/2018/1/e7/",
url="http://www.ncbi.nlm.nih.gov/pubmed/29653920"
}