JMIR Publications

Journal of Medical Internet Research

The leading peer-reviewed journal for digital medicine, and health & healthcare in the Internet age.

JMIR's Thomson Reuter Impact Factor of 4.5 for 2015
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  • Source: DiariVeu - laveupv.com via FlickR / Foter.com; Copyright: DiariVeu; URL: https://www.flickr.com/photos/diariveu/32685988940/; License: Creative Commons Attribution + Noncommercial + ShareAlike (CC-BY-NC-SA).

    Methodological and Ethical Challenges in a Web-Based Randomized Controlled Trial of a Domestic Violence Intervention

    Abstract:

    The use of Web-based methods to deliver and evaluate interventions is growing in popularity, particularly in a health care context. They have shown particular promise in responding to sensitive or stigmatized issues such as mental health and sexually transmitted infections. In the field of domestic violence (DV), however, the idea of delivering and evaluating interventions via the Web is still relatively new. Little is known about how to successfully navigate several challenges encountered by the researchers while working in this area. This paper uses the case study of I-DECIDE, a Web-based healthy relationship tool and safety decision aid for women experiencing DV, developed in Australia. The I-DECIDE website has recently been evaluated through a randomized controlled trial, and we outline some of the methodological and ethical challenges encountered during recruitment, retention, and evaluation. We suggest that with careful consideration of these issues, randomized controlled trials can be safely conducted via the Web in this sensitive area.

  • Collage created with DPP meta analysis mobile app created by the authors https://dx.doi.org/10.2196/jmir.4709. Licensed under Creative Commons BY-NC-SA 2.0, and breakfast scene (PlaceIt). Source: jmir.org; Copyright: JMIR Publications; License: Creative Commons Attribution (CC-BY).

    The Effect of Technology-Mediated Diabetes Prevention Interventions on Weight: A Meta-Analysis

    Abstract:

    Background: Lifestyle interventions targeting weight loss, such as those delivered through the Diabetes Prevention Program, reduce the risk of developing type 2 diabetes. Technology-mediated interventions may be an option to help overcome barriers to program delivery, and to disseminate diabetes prevention programs on a larger scale. Objective: We conducted a meta-analysis to evaluate the effect of such technology-mediated interventions on weight loss. Methods: In this meta-analysis, six databases were searched to identify studies reporting weight change that used technology to mediate diet and exercise interventions, and targeted individuals at high risk for developing type 2 diabetes. Studies published between January 1, 2002 and August 4, 2016 were included. Results: The search identified 1196 citations. Of those, 15 studies met the inclusion criteria and evaluated 18 technology-mediated intervention arms delivered to a total of 2774 participants. Study duration ranged from 12 weeks to 2 years. A random-effects meta-analysis showed a pooled weight loss effect of 3.76 kilograms (95% CI 2.8-4.7; P<.001) for the interventions. Several studies also reported improved glycemic control following the intervention. The small sample sizes and heterogeneity of the trials precluded an evaluation of which technology-mediated intervention method was most efficacious. Conclusions: Technology-mediated diabetes prevention programs can result in clinically significant amounts of weight loss, as well as improvements in glycaemia in patients with prediabetes. Due to their potential for large-scale implementation, these interventions will play an important role in the dissemination of diabetes prevention programs.

  • Man using computer. Source: Flickr.com; Copyright: lemsterschier; URL: https://goo.gl/zfIzPg; License: Public Domain (CC0).

    Assessing Feasibility and Acceptability of Web-Based Enhanced Relapse Prevention for Bipolar Disorder (ERPonline): A Randomized Controlled Trial

    Abstract:

    Background: Interventions that teach people with bipolar disorder (BD) to recognize and respond to early warning signs (EWS) of relapse are recommended but implementation in clinical practice is poor. Objectives: The objective of this study was to test the feasibility and acceptability of a randomized controlled trial (RCT) to evaluate a Web-based enhanced relapse prevention intervention (ERPonline) and to report preliminary evidence of effectiveness. Methods: A single-blind, parallel, primarily online RCT (n=96) over 48 weeks comparing ERPonline plus usual treatment with “waitlist (WL) control” plus usual treatment for people with BD recruited through National Health Services (NHSs), voluntary organizations, and media. Randomization was independent, minimized on number of previous episodes (<8, 8-20, 21+). Primary outcomes were recruitment and retention rates, levels of intervention use, adverse events, and participant feedback. Process and clinical outcomes were assessed by telephone and Web and compared using linear models with intention-to-treat analysis. Results: A total of 280 people registered interest online, from which 96 met inclusion criteria, consented, and were randomized (49 to WL, 47 to ERPonline) over 17 months, with 80% retention in telephone and online follow-up at all time points, except at week 48 (76%). Acceptability was high for both ERPonline and trial methods. ERPonline cost approximately £19,340 to create, and £2176 per year to host and maintain the site. Qualitative data highlighted the importance of the relationship that the users have with Web-based interventions. Differences between the group means suggested that access to ERPonline was associated with: a more positive model of BD at 24 weeks (10.70, 95% CI 0.90 to 20.5) and 48 weeks (13.1, 95% CI 2.44 to 23.93); increased monitoring of EWS of depression at 48 weeks (−1.39, 95% CI −2.61 to −0.163) and of hypomania at 24 weeks (−1.72, 95% CI −2.98 to −0.47) and 48 weeks (−1.61, 95% CI −2.92 to −0.30), compared with WL. There was no evidence of impact of ERPonline on clinical outcomes or medication adherence, but relapse rates across both arms were low (15%) and the sample remained high functioning throughout. One person died by suicide before randomization and 5 people in ERPonline and 6 in WL reported ideas of suicide or self-harm. None were deemed study related by an independent Trial Steering Committee (TSC). Conclusions: ERPonline offers a cheap accessible option for people seeking ongoing support following successful treatment. However, given high functioning and low relapse rates in this study, testing clinical effectiveness for this population would require very large sample sizes. Building in human support to use ERPonline should be considered. Trial registration: International Standard Randomized Controlled Trial Number (ISRCTN): 56908625; http://www.isrctn.com/ISRCTN56908625 (Archived by WebCite at http://www.webcitation.org/6of1ON2S0)

  • Source: Pixabay; URL: https://cdn.pixabay.com/photo/2014/04/26/04/25/fitness-332278__340.jpg; License: Public Domain (CC0).

    Internet-Delivered Health Interventions That Work: Systematic Review of Meta-Analyses and Evaluation of Website Availability

    Abstract:

    Background: Due to easy access and low cost, Internet-delivered therapies offer an attractive alternative to improving health. Although numerous websites contain health-related information, finding evidence-based programs (as demonstrated through randomized controlled trials, RCTs) can be challenging. We sought to bridge the divide between the knowledge gained from RCTs and communication of the results by conducting a global systematic review and analyzing the availability of evidence-based Internet health programs. Objectives: The study aimed to (1) discover the range of health-related topics that are addressed through Internet-delivered interventions, (2) generate a list of current websites used in the trials which demonstrate a health benefit, and (3) identify gaps in the research that may have hindered dissemination. Our focus was on Internet-delivered self-guided health interventions that did not require real-time clinical support. Methods: A systematic review of meta-analyses was conducted using Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines (PROSPERO Registration Number CRD42016041258). MEDLINE via Ovid, PsycINFO, Embase, Cochrane Database of Systematic Reviews, and the Cumulative Index to Nursing and Allied Health Literature (CINAHL) were searched. Inclusion criteria included (1) meta-analyses of RCTs, (2) at least one Internet-delivered intervention that measured a health-related outcome, and (3) use of at least one self-guided intervention. We excluded group-based therapies. There were no language restrictions. Results: Of the 363 records identified through the search, 71 meta-analyses met inclusion criteria. Within the 71 meta-analyses, there were 1733 studies that contained 268 unique RCTs which tested self-help interventions. On review of the 268 studies, 21.3% (57/268) had functional websites. These included evidence-based Web programs on substance abuse (alcohol, tobacco, cannabis), mental health (depression, anxiety, post-traumatic stress disorder [PTSD], phobias, panic disorders, obsessive compulsive disorder [OCD]), and on diet and physical activity. There were also evidence-based programs on insomnia, chronic pain, cardiovascular risk, and childhood health problems. These programs tended to be intensive, requiring weeks to months of engagement by the user, often including interaction, personalized and normative feedback, and self-monitoring. English was the most common language, although some were available in Spanish, French, Portuguese, Dutch, German, Norwegian, Finnish, Swedish, and Mandarin. There were several interventions with numbers needed to treat of <5; these included painACTION, Mental Health Online for panic disorders, Deprexis, Triple P Online (TPOL), and U Can POOP Too. Hyperlinks of the sites have been listed. Conclusions: A wide range of evidence-based Internet programs are currently available for health-related behaviors, as well as disease prevention and treatment. However, the majority of Internet-delivered health interventions found to be efficacious in RCTs do not have websites for general use. Increased efforts to provide mechanisms to host “interventions that work” on the Web and to assist the public in locating these sites are necessary.

  • Video focus group screenshot example. Source: Figure 3 from http://www.jmir.org/2017/3/e80; Copyright: the authors; License: Creative Commons Attribution (CC-BY).

    Virtual Versus In-Person Focus Groups: Comparison of Costs, Recruitment, and Participant Logistics

    Abstract:

    Background: Virtual focus groups—such as online chat and video groups—are increasingly promoted as qualitative research tools. Theoretically, virtual groups offer several advantages, including lower cost, faster recruitment, greater geographic diversity, enrollment of hard-to-reach populations, and reduced participant burden. However, no study has compared virtual and in-person focus groups on these metrics. Objective: To rigorously compare virtual and in-person focus groups on cost, recruitment, and participant logistics. We examined 3 focus group modes and instituted experimental controls to ensure a fair comparison. Methods: We conducted 6 1-hour focus groups in August 2014 using in-person (n=2), live chat (n=2), and video (n=2) modes with individuals who had type 2 diabetes (n=48 enrolled, n=39 completed). In planning groups, we solicited bids from 6 virtual platform vendors and 4 recruitment firms. We then selected 1 platform or facility per mode and a single recruitment firm across all modes. To minimize bias, the recruitment firm employed different recruiters by mode who were blinded to recruitment efforts for other modes. We tracked enrollment during a 2-week period. A single moderator conducted all groups using the same guide, which addressed the use of technology to communicate with health care providers. We conducted the groups at the same times of day on Monday to Wednesday during a single week. At the end of each group, participants completed a short survey. Results: Virtual focus groups offered minimal cost savings compared with in-person groups (US $2000 per chat group vs US $2576 per in-person group vs US $2,750 per video group). Although virtual groups did not incur travel costs, they often had higher management fees and miscellaneous expenses (eg, participant webcams). Recruitment timing did not differ by mode, but show rates were higher for in-person groups (94% [15/16] in-person vs 81% [13/16] video vs 69% [11/16] chat). Virtual group participants were more geographically diverse (but with significant clustering around major metropolitan areas) and more likely to be non-white, less educated, and less healthy. Internet usage was higher among virtual group participants, yet virtual groups still reached light Internet users. In terms of burden, chat groups were easiest to join and required the least preparation (chat = 13 minutes, video = 40 minutes, in-person = 78 minutes). Virtual group participants joined using laptop or desktop computers, and most virtual participants (82% [9/11] chat vs 62% [8/13] video) reported having no other people in their immediate vicinity. Conclusions: Virtual focus groups offer potential advantages for participant diversity and reaching less healthy populations. However, virtual groups do not appear to cost less or recruit participants faster than in-person groups. Further research on virtual group data quality and group dynamics is needed to fully understand their advantages and limitations.

  • Source: Image created by the authors.; License: Creative Commons Attribution (CC-BY).

    Rates, Delays, and Completeness of General Practitioners’ Responses to a Postal Versus Web-Based Survey: A Randomized Trial

    Abstract:

    Background: Web-based surveys have become a new and popular method for collecting data, but only a few studies have directly compared postal and Web-based surveys among physicians, and none to our knowledge among general practitioners (GPs). Objective: Our aim is to compare two modes of survey delivery (postal and Web-based) in terms of participation rates, response times, and completeness of questionnaires in a study assessing GPs’ preventive practices. Methods: This randomized study was conducted in Western Switzerland (Geneva and Vaud) and in France (Alsace and Pays de la Loire) in 2015. A random selection of community-based GPs (1000 GPs in Switzerland and 2400 GPs in France) were randomly allocated to receive a questionnaire about preventive care activities either by post (n=700 in Switzerland, n=400 in France) or by email (n=300 in Switzerland, n=2000 in France). Reminder messages were sent once in the postal group and twice in the Web-based group. Any GPs practicing only complementary and alternative medicine were excluded from the study. Results: Among the 3400 contacted GPs, 764 (22.47%, 95% CI 21.07%-23.87%) returned the questionnaire. Compared to the postal group, the participation rate in the Web-based group was more than four times lower (246/2300, 10.70% vs 518/1100, 47.09%, P<.001), but median response time was much shorter (1 day vs 1-3 weeks, P<.001) and the number of GPs having fully completed the questionnaire was almost twice as high (157/246, 63.8% vs 179/518, 34.6%, P<.001). Conclusions: Web-based surveys offer many advantages such as reduced response time, higher completeness of data, and large cost savings, but our findings suggest that postal surveys can be still considered for GP research. The use of mixed-mode approaches is probably a good strategy to increase GPs’ participation in surveys while reducing costs.

  • The image is the sign in page of the study's program. It is also shown in the multimedia appendix as one of the sample images of the program. The image is the screenshot of the program developed by the authors. Copyright: The authors; License: Creative Commons Attribution (CC-BY).

    The Efficacy of Internet-Based Mindfulness Training and Cognitive-Behavioral Training With Telephone Support in the Enhancement of Mental Health Among...

    Abstract:

    Background: College students and working adults are particularly vulnerable to stress and other mental health problems, and mental health promotion and prevention are needed to promote their mental health. In recent decades, mindfulness-based training has demonstrated to be efficacious in treating physical and psychological conditions. Objective: The aim of our study was to examine the efficacy of an Internet-based mindfulness training program (iMIND) in comparison with the well-established Internet-based cognitive-behavioral training program (iCBT) in promoting mental health among college students and young working adults. Methods: This study was a 2-arm, unblinded, randomized controlled trial comparing iMIND with iCBT. Participants were recruited online and offline via mass emails, advertisements in newspapers and magazines, announcement and leaflets in primary care clinics, and social networking sites. Eligible participants were randomized into either the iMIND (n=604) or the iCBT (n=651) condition. Participants received 8 Web-based sessions with information and exercises related to mindfulness or cognitive-behavioral principles. Telephone or email support was provided by trained first tier supporters who were supervised by the study’s research team. Primary outcomes included mental and physical health-related measures, which were self-assessed online at preprogram, postprogram, and 3-month follow-up. Results: Among the 1255 study participants, 213 and 127 completed the post- and 3-month follow-up assessment, respectively. Missing data were treated using restricted maximum likelihood estimation. Both iMIND (n=604) and iCBT (n=651) were efficacious in improving mental health, psychological distress, life satisfaction, sleep disturbance, and energy level. Conclusions: Both Internet-based mental health programs showed potential in improving the mental health from pre- to postassessment, and such improvement was sustained at the 3-month follow-up. The high attrition rate in this study suggests the need for refinement in future technology-based psychological programs. Mental health professionals need to team up with experts in information technology to increase personalization of Web-based interventions to enhance adherence. Trial Registration: Chinese Clinical Trial Registry (ChiCTR): ChiCTR-TRC-12002623; https://www2.ccrb.cuhk.edu.hk/ registry/public/191 (Archived by WebCite at http://www.webcitation.org/6kxt8DjM4).

  • Hand with compass. Source: Unsplash; Copyright: Anastasia Petrova; URL: https://unsplash.com/search/navigate?photo=xu2WYJek5AI; License: Public Domain (CC0).

    Enlight: A Comprehensive Quality and Therapeutic Potential Evaluation Tool for Mobile and Web-Based eHealth Interventions

    Abstract:

    Background: Studies of criteria-based assessment tools have demonstrated the feasibility of objectively evaluating eHealth interventions independent of empirical testing. However, current tools have not included some quality constructs associated with intervention outcome, such as persuasive design, behavior change, or therapeutic alliance. In addition, the generalizability of such tools has not been explicitly examined. Objective: The aim is to introduce the development and further analysis of the Enlight suite of measures, developed to incorporate the aforementioned concepts and address generalizability aspects. Methods: As a first step, a comprehensive systematic review was performed to identify relevant quality rating criteria in line with the PRISMA statement. These criteria were then categorized to create Enlight. The second step involved testing Enlight on 42 mobile apps and 42 Web-based programs (delivery mediums) targeting modifiable behaviors related to medical illness or mental health (clinical aims). Results: A total of 476 criteria from 99 identified sources were used to build Enlight. The rating measures were divided into two sections: quality assessments and checklists. Quality assessments included usability, visual design, user engagement, content, therapeutic persuasiveness, therapeutic alliance, and general subjective evaluation. The checklists included credibility, privacy explanation, basic security, and evidence-based program ranking. The quality constructs exhibited excellent interrater reliability (intraclass correlations=.77-.98, median .91) and internal consistency (Cronbach alphas=.83-.90, median .88), with similar results when separated into delivery mediums or clinical aims. Conditional probability analysis revealed that 100% of the programs that received a score of fair or above (≥3.0) in therapeutic persuasiveness or therapeutic alliance received the same range of scores in user engagement and content—a pattern that did not appear in the opposite direction. Preliminary concurrent validity analysis pointed to positive correlations of combined quality scores with selected variables. The combined score that did not include therapeutic persuasiveness and therapeutic alliance descriptively underperformed the other combined scores. Conclusions: This paper provides empirical evidence supporting the importance of persuasive design and therapeutic alliance within the context of a program’s evaluation. Reliability metrics and preliminary concurrent validity analysis indicate the potential of Enlight in examining eHealth programs regardless of delivery mediums and clinical aims.

  • Question mark. Source: Pixabay.com; URL: https://pixabay.com/en/human-head-man-male-cranium-1211467/; License: Public Domain (CC0).

    Longitudinal Changes in Psychological States in Online Health Community Members: Understanding the Long-Term Effects of Participating in an Online Depression...

    Abstract:

    Background: Major depression is a serious challenge at both the individual and population levels. Although online health communities have shown the potential to reduce the symptoms of depression, emotional contagion theory suggests that negative emotion can spread within a community, and prolonged interactions with other depressed individuals has potential to worsen the symptoms of depression. Objective: The goals of our study were to investigate longitudinal changes in psychological states that are manifested through linguistic changes in depression community members who are interacting with other depressed individuals. Methods: We examined emotion-related language usages using the Linguistic Inquiry and Word Count (LIWC) program for each member of a depression community from Reddit. To measure the changes, we applied linear least-squares regression to the LIWC scores against the interaction sequence for each member. We measured the differences in linguistic changes against three online health communities focusing on positive emotion, diabetes, and irritable bowel syndrome. Results: On average, members of an online depression community showed improvement in 9 of 10 prespecified linguistic dimensions: “positive emotion,” “negative emotion,” “anxiety,” “anger,” “sadness,” “first person singular,” “negation,” “swear words,” and “death.” Moreover, these members improved either significantly or at least as much as members of other online health communities. Conclusions: We provide new insights into the impact of prolonged participation in an online depression community and highlight the positive emotion change in members. The findings of this study should be interpreted with caution, because participating in an online depression community is not the sole factor for improvement or worsening of depressive symptoms. Still, the consistent statistical results including comparative analyses with different communities could indicate that the emotion-related language usage of depression community members are improving either significantly or at least as much as members of other online communities. On the basis of these findings, we contribute practical suggestions for designing online depression communities to enhance psychosocial benefit gains for members. We consider these results to be an important step toward a better understanding of the impact of prolonged participation in an online depression community, in addition to providing insights into the long-term psychosocial well-being of members.

  • GetCheckedOnline advertisement. Source: The BC Centre for Disease Control; URL: https://getcheckedonline.com/SiteCollectionImages/Nowyoucangetcheckedonline.png; License: Public Domain (CC0).

    Use of GetCheckedOnline, a Comprehensive Web-based Testing Service for Sexually Transmitted and Blood-Borne Infections

    Abstract:

    Background: The British Columbia Centre for Disease Control implemented a comprehensive Web-based testing service GetCheckedOnline (GCO) in September 2014 in Vancouver, Canada. GCO’s objectives are to increase testing for sexually transmitted and blood-borne infections (STBBIs), reach high-prevalence populations facing testing barriers, and increase clinical STI service capacity. GCO was promoted through email invitations to provincial STI clinic clients, access codes to clients unable to access immediate clinic-based testing (deferred testers), and a campaign to gay, bisexual, and other men who have sex with men (MSM). Objective: The objective of the study was to report on characteristics of GCO users, use and test outcomes (overall and by promotional strategy) during this pilot phase. Methods: We used GCO program data, website metrics, and provincial STI clinic records to describe temporal trends, progression through the service pathway, and demographic, risk, and testing outcomes for individuals creating GCO accounts during the first 15 months of implementation. Results: Of 868 clients creating accounts, 318 (36.6%) submitted specimens, of whom 96 (30.2%) tested more than once and 10 (3.1%) had a positive STI diagnosis. The proportion of clients submitting specimens increased steadily over the course of the pilot phase following introduction of deferred tester codes. Clients were diverse with respect to age, gender, and ethnicity, although youth and individuals of nonwhite ethnicity were underrepresented. Of the 506 clients completing risk assessments, 215 (42.5%) were MSM, 89 (17.6%) were symptomatic, 47 (9.3%) were STI contacts, 232 (45.8%) reported condomless sex, 146 (28.9%) reported ≥4 partners in the past 3 months, and 76 (15.0%) reported a recent STI. A total of 63 (12.5%) GCO clients were testing for the first time. For 868 accounts created, 337 (38.8%) were by clinic invitations (0 diagnoses), 298 (34.3%) were by deferred testers (6 diagnoses), 194 (22.4%) were by promotional campaign (3 diagnoses), and 39 (4.5%) were by other means (1 diagnosis). Conclusions: Our evaluation suggests that GCO is an acceptable and feasible approach to engage individuals in testing. Use by first-time testers, repeated use, and STI diagnosis of individuals unable to access immediate clinic-based testing suggest GCO may facilitate uptake of STBBI testing and earlier diagnosis. Use by MSM and individuals reporting sexual risk suggests GCO may reach populations with a higher risk of STI. Motivation to test (eg, unable to access clinical services immediately) appears a key factor underlying GCO use. These findings identify areas for refinement of the testing model, further promotion, and future research (including understanding reasons for drop-off through the service pathway and more comprehensive evaluation of effectiveness). Increased uptake and diagnosis corresponding with expansion of the service within British Columbia will permit future evaluation of this service across varying populations and settings.

  • Kinect set-up. Image source: created by the authors.

    Microsoft Kinect-based Continuous Performance Test: An Objective Attention Deficit Hyperactivity Disorder Assessment

    Abstract:

    Background: One of the major challenges in mental medical care is finding out new instruments for an accurate and objective evaluation of the attention deficit hyperactivity disorder (ADHD). Early ADHD identification, severity assessment, and prompt treatment are essential to avoid the negative effects associated with this mental condition. Objective: The aim of our study was to develop a novel ADHD assessment instrument based on Microsoft Kinect, which identifies ADHD cardinal symptoms in order to provide a more accurate evaluation. Methods: A group of 30 children, aged 8-12 years (10.3 [SD 1.4]; male 70% [21/30]), who were referred to the Child and Adolescent Psychiatry Unit of the Department of Psychiatry at Fundación Jiménez Díaz Hospital (Madrid, Spain), were included in this study. Children were required to meet the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) criteria of ADHD diagnosis. One of the parents or guardians of the children filled the Spanish version of the Strengths and Weaknesses of ADHD Symptoms and Normal Behavior (SWAN) rating scale used in clinical practice. Each child conducted a Kinect-based continuous performance test (CPT) in which the reaction time (RT), the commission errors, and the time required to complete the reaction (CT) were calculated. The correlations of the 3 predictors, obtained using Kinect methodology, with respect to the scores of the SWAN scale were calculated. Results: The RT achieved a correlation of -.11, -.29, and -.37 with respect to the inattention, hyperactivity, and impulsivity factors of the SWAN scale. The correlations of the commission error with respect to these 3 factors were -.03, .01, and .24, respectively. Conclusions: Our findings show a relation between the Microsoft Kinect-based version of the CPT and ADHD symptomatology assessed through parental report. Results point out the importance of future research on the development of objective measures for the diagnosis of ADHD among children and adolescents.

  • Image source: Copyright courtesy of nenetus at FreeDigitalPhotos.net. https://goo.gl/jHgPh9 Image ID: 100361470. Free for commercial use.

    Outcomes in Child Health: Exploring the Use of Social Media to Engage Parents in Patient-Centered Outcomes Research

    Abstract:

    Background: With the rapid growth of technology and its improved accessibility globally, social media is gaining an increasingly important role in health care. Patients are frequently engaging with social media to access information, share content, and interact with others in online health communities. However, the use of social media as a stakeholder engagement strategy has been minimally explored, and effective methods for involving participants in research on the identification of patient-centered outcomes remain unknown. Objective: The aim of this study was to evaluate the process of using social media to engage parents in identifying patient-centered outcomes, using acute respiratory infections in children as an example to gauge feasibility. Methods: We conducted a process evaluation of a two-phase Web-based strategy to engage parents in research on patient-centered outcomes. In the first phase, we developed a website and study-specific Facebook and Twitter accounts to recruit parents to complete a Web-based survey identifying patient-centered outcomes. In the second phase, we used Facebook to host discussion with parents based on the survey results. The reach of social media as an engagement strategy and the characteristics of the population recruited were assessed. Results: During the first phase, there were 5027 visits to the survey site, 110 participants completed the survey, 553 unique users visited the study website (675 visits), the Facebook page received 104 likes, and the Twitter account gained 52 followers over the 14-week study period. Most survey respondents identified Facebook (51.8%, 57/110) or a friend (45.5%, 50/110) as their source of referral. It was found that 70.0% (77/110) of respondents resided in Canada, in urban centers (92.7%, 102/110), and 88.2% (97/110) had a college or university degree or higher. The median year of birth was 1978 and 90.0% (99/110) were female. Most survey responses (88.2%, 97/110) were completed during the first month of the study. In the second phase, 4 parents participated in the discussion, our Facebook page gained 43 followers, and our posts reached 5866 users. Mirroring the first phase, most followers were female (79%, 34/43), between 35 and 44 years (49%, 21/43), and resided in Canada (98%, 42/43). User engagement was variable, with no clear patterns emerging in timing, topic, or type of post. Conclusions: Most participants were highly educated, urban dwelling, and female, limiting diversity and representativeness. The source of referral for most survey respondents was through Facebook or a friend, suggesting the importance of personal connections in the dissemination and uptake of information. User engagement with the Facebook-based discussion threads was inconsistent and difficult to initiate. Although there is substantial interest in the use of social media as a component of an effective patient engagement strategy, challenges regarding participant engagement, representativeness, obtaining buy-in, and resources required must be carefully considered.

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    Date Submitted: Mar 24, 2017

    Open Peer Review Period: Mar 29, 2017 - May 24, 2017

    Background: Most people do not achieve the government’s minimum recommendations for physical activity and want help to increase their levels but are unable to gain access to face-to-face counselling...

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    Open Peer Review Period: Mar 29, 2017 - May 24, 2017

    Background: This project is aligned to a current need for healthcare within a South African context to address resource poor climates in rural and peri-urban settings shifting focus from an overserved...

    Background: This project is aligned to a current need for healthcare within a South African context to address resource poor climates in rural and peri-urban settings shifting focus from an overserved urban region. The University of KwaZulu-Natal, in South Africa has embarked on a programme within the School of Health Sciences (SHS) to decentralise the clinical learning platform in order to address this disparity in healthcare in the country. Framed in a pragmatic stance, this proposal is geared towards informing the roll out of the decentralised training within the province of KwaZulu-Natal within the SHS. Whilst this vision is the driving force, there currently remains uncertainty as to how the implementation of this programme would unfold, especially for the diverse School which includes Audiology, Dentistry, Occupational Therapy, Optometry, Pharmacy, Physiotherapy, Speech-Language Pathology and Sport Science. Consequently, there is a need to carefully monitor and manage this DCT in order to ensure that the students exposed to this longitudinal placement have a positive learning experience and achieve expected academic outcomes and that the needs of the communities are addressed adequately. Objective: The study aims to explore the factors that will influence the roll-out of the DCT towards the development of an inclusive and context-specific model that would suit the SHS in the DCT programme at UKZN. Methods: Key role players, including, but not limited to, the ministry of health policy makers and clinicians, as well as policy makers in the university, and clinical educators, academicians and students of UKZN within the SHS will participate in this project. Once the infrastructural, staffing and pedagogical enablers and challenges are identified, together with a review of existing models of decentralised training, a context-specific model of decentralised training for the school will be proposed based on initial pilot data that will be tested within iterative cycles in an action learning action research process in this project. Results: The study was designed to fit within the existing structures and emerging framework and memorandum of understanding between the partners in this initiative, namely, the Ministry of Health and the UKZN. In embracing this call to develop healthcare professionals that are competent and prepared for the changing dynamics of healthcare in a developing world. Conclusions: It is envisaged that this study, the first to include a combination of health professionals in a decentralised clinical training platform at UKZN, would not only contribute to effective service delivery but may also serve to inform an inter-professional programme within the SHS and tertiary institutions in similar settings.

  • Exploring the potential of a wearable camera to examine the early obesogenic home environment

    Date Submitted: Mar 25, 2017

    Open Peer Review Period: Mar 25, 2017 - May 20, 2017

    Background: The ‘obesogenic’ home environment is usually examined via self-report, and objective measures are required. Objective: This study explored whether the wearable camera ‘SenseCam’ ca...

    Background: The ‘obesogenic’ home environment is usually examined via self-report, and objective measures are required. Objective: This study explored whether the wearable camera ‘SenseCam’ can be used to examine the early obesogenic home environment, and whether it is useful for validation of self-report measures. Methods: Fifteen primary caregivers of young children (mean age of child 4 years) completed the Home Environment Interview (HEI). Seven to 19 days after the HEI, participants wore the SenseCam at home for 4 days. A semi-structured interview assessed participants’ experience of wearing the SenseCam. Intraclass correlation coefficients (ICCs), percent agreement, and kappa statistics were used as validity estimates for 54 home environment features. Results: Wearing the SenseCam was generally acceptable to participants. The SenseCam captured all 54 HEI features, but with varying detail. Thirty-six features (67%) had satisfactory validity (ICC or kappa ≥ 0.40; percent agreement 80 where kappa could not be calculated). Validity was good or excellent (ICC or kappa ≥ 0.60) for fresh fruit and vegetable availability, fresh vegetable variety, the display of food/drink (except sweet snacks), family meals, child eating lunch/dinner while watching TV, garden/play equipment, the number of TVs/DVD players, and media equipment in the child’s bedroom. Validity was poor for tinned and frozen vegetable availability/variety, and sweet snack availability. Conclusions: The SenseCam has the potential to objectively examine and validate multiple aspects of the obesogenic home environment. Further research should aim to replicate the findings in a larger, representative sample.

  • Recommending education materials for diabetic questions using information retrieval approaches

    Date Submitted: Mar 24, 2017

    Open Peer Review Period: Mar 25, 2017 - May 20, 2017

    Background: Self-management is crucial to diabetes care and providing expert-vetted content for answering patients’ questions is crucial in facilitating patient self-management. Objective: To invest...

    Background: Self-management is crucial to diabetes care and providing expert-vetted content for answering patients’ questions is crucial in facilitating patient self-management. Objective: To investigate the use of information retrieval (IR) techniques in recommending patient education materials for diabetic questions of patients.   Methods: We compared two retrieval algorithms, one based on LDA topic modeling (TMB) and one based on semantic group (SGB), with the baseline retrieval models, vector space model (VSM) in recommending diabetic patient education materials to diabetic questions posted on the TuDiabetes forum. The evaluation was based on a gold standard data set consisting of 50 randomly selected diabetic questions where the relevancy of diabetic education materials to the questions was manually assigned by two experts. The performance was assessed using precision of top ranked documents. Results: We retrieved 7,510 diabetic questions on the forum and 144 diabetic patient educational materials from the patient education database at Mayo Clinic. Corpus analysis indicates language used by diabetic questions is different from patient education materials. TMB outperformed other retrieval algorithms. For example, for the top retrieved document, the precision of TMB, SGB, and VSM models is 67.0%, 62.8%, and 54.3% respectively. Conclusions: The study demonstrated that topic modeling can mitigate the vocabulary difference and that it achieved the best performance in recommending education materials for answering patients’ questions. One direction for future work is to assess the generalizability of our findings and to extend our study to other disease areas, other patient education material resources, and online forums.

  • Leveraging Social Networking Sites for an Autoimmune Hepatitis Research Study: A preliminary experience

    Date Submitted: Mar 21, 2017

    Open Peer Review Period: Mar 24, 2017 - May 19, 2017

    Background: Conventional study approaches are often inadequate in rare disease investigation. Social-networking sites, such as Facebook, may provide a vehicle to circumvent common research limitations...

    Background: Conventional study approaches are often inadequate in rare disease investigation. Social-networking sites, such as Facebook, may provide a vehicle to circumvent common research limitations and pitfalls. We report our preliminary experience with social media-based methodology for subject recruitment and participation into an ongoing study of autoimmune hepatitis (AIH). Objective: To test the hypothesis that a social media-based methodology is effective for recruiting participants into AIH patient-oriented research. Methods: We established a Facebook community, the Autoimmune Hepatitis Research Network (AHRN), in 2014 in order to provide a secure and reputable distillation of current literature and AIH research opportunities. Quarterly advertisements for our ongoing observational AIH study were posted on the AHRN over 2 years. Interested and self-reported AIH participants were subsequently enrolled after review of study materials and completion of an informed consent by our study coordinator. Participants returned completed study materials, including epidemiologic questionnaires and genetic material, to our facility via mail. Outside medical records were obtained and reviewed by a study physician. Results: We successfully obtained all study materials from 29 participants with self-reported AIH within 2 years from 20 different states. Liver biopsy results were available for 26 participants (90%), of which 21 (81%) had findings consistent with AIH, 4 (15%) were suggestive of AIH with features of primary biliary cholangitis (PBC), and one (4%) had PBC alone. Twenty-four of the participants (83%) had at least 2 of 3 proposed criteria: Positive autoimmune markers, consistent histologic findings of AIH on liver biopsy, and reported treatment with immunosuppressant medications. Self-reported and physician records were discrepant for immunosuppressant medications or for AIH/PBC diagnoses in 4 patients. Conclusions: Social networking sites can be effective ancillary tools for facilitating patient-oriented research in rare diseases. A social media-based approach transcends established limitations in rare disease research and can further develop research communities.

  • The Use of Mobile Applications and SMS Messaging as Physical and Mental Health Interventions: A Systematic Review

    Date Submitted: Mar 23, 2017

    Open Peer Review Period: Mar 23, 2017 - May 18, 2017

    Background: The initial introduction of the World Wide Web in 1990 brought around the biggest change in information acquisition that the modern world has ever seen. Due to the abundance of devices and...

    Background: The initial introduction of the World Wide Web in 1990 brought around the biggest change in information acquisition that the modern world has ever seen. Due to the abundance of devices and ease of access they subsequently allow, the utility of mobile health (mHealth) has never been more endemic. A substantial amount of interactive and psychoeducational apps are readily available to download concerning a wide range of health issues. mHealth has the potential to reduce waiting times for appointments, eradicate the need to meet in person with a clinician, successively diminishing the workload of mental health professionals, be more cost effective to practises and encourage self-care tactics. Previous research has given valid evidence with empirical studies proving the effectiveness of physical and mental health interventions using mobile apps. Alongside apps, there is evidence to show that receiving SMS messages which entail psychoeducation, medication reminders and links to useful informative web pages can also be advantageous to a patient’s mental and physical wellbeing. Available mHealth apps and SMS services and their ever improving quality, necessitates a systematic review in the area in reference to reduction of symptomology, adherence to intervention and usability. Objective: The review aimed to study the efficacy of mobile applications and SMS messages as mHealth interventions for self-guided care. Methods: A systematic literature search was carried out in JMIR, PubMed, PsychINFO, PsychARTICLES, Google Scholar, MEDLINE & SAGE. The search spanned from January 2008-January 2017. The primary outcome measures consisted of; weight management, (pregnancy) smoking cessation, medication adherence, depression, anxiety and stress. Between group and within group effect sizes (Cohen’s d) for the mHealth intervention method group were determined. Results: Twenty seven studies, inclusive of 4658 participants were reviewed. The papers included RCT’s (n=19), within groups studies (n=7) and one within group study with qualitative aspect. Studies shown significant reductions on of anxiety, stress and depression. Within group and between groups effect sizes ranged from 0.05-3.37 (immediately post-test), 0.05-3.25 (one month follow up), 0.08-3.08 (two month follow up), 0.00-3.10 (three month follow up) and 0.02-0.27 (six month follow up).Usability and feasibility of mHealth interventions, where reported, also gave promising, significant results. Conclusions: The review shows the promising and emerging efficacy of using mobile applications and SMS messaging as mHealth interventions.

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