Web-Based Peer Support Interventions for Adults Living With Chronic Conditions: Scoping Review.

BACKGROUND: Globally, 1 in 3 adults live with multiple chronic conditions. Thus, effective interventions are needed to prevent and manage these chronic conditions and to reduce the associated health care costs. Teaching effective self-management practices to people with chronic diseases is one strategy to address the burden of chronic conditions. With the increasing availability of and access to the internet, the implementation of web-based peer support programs has become increasingly common. OBJECTIVE: The purpose of this scoping review is to synthesize existing literature and key characteristics of web-based peer support programs for persons with chronic conditions. METHODS: This scoping review follows the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) extension for scoping reviews guidelines. Studies were identified by searching MEDLINE, CINAHL, Embase, PsycINFO, and the Physiotherapy Evidence Database. Chronic diseases identified by the Public Health Agency of Canada were included. Our review was limited to peer support interventions delivered on the web. Peers providing support had to have the chronic condition that they were providing support for. The information abstracted included the year of publication, country of study, purpose of the study, participant population, key characteristics of the intervention, outcome measures, and results. RESULTS: After duplicates were removed, 12,641 articles were screened. Data abstraction was completed for 41 articles. There was a lack of participant diversity in the included studies, specifically with respect to the conditions studied. There was a lack of studies with older participants aged ≥70 years. There was inconsistency in how the interventions were described in terms of the duration and frequency of the interventions. Informational, emotional, and appraisal support were implemented in the studied interventions. Few studies used a randomized controlled trial design. A total of 4 of the 6 randomized controlled trials reported positive and significant results, including decreased emotional distress and increased health service navigation, self-efficacy, social participation, and constructive attitudes and approaches. Among the qualitative studies included in this review, there were several positive experiences related to participating in a web-based peer support intervention, including increased compassion and improved attitudes toward the individual's chronic condition, access to information, and empowerment. CONCLUSIONS: There is limited recent, high-level evidence on web-based peer support interventions. Where evidence exists, significant improvements in social participation, self-efficacy, and health-directed activity were demonstrated. Some studies incorporated a theoretical framework, and all forms of peer support-emotional, informational, and appraisal support-were identified in the studies included in this review. We recommend further research on web-based peer support in more diverse patient groups (eg, for older adults and chronic conditions outside of cancer, cardiovascular disease, and HIV or AIDS). Key gaps in the area of web-based peer support will serve to inform the development and implementation of future programs.

Web-Based Health Coaching for Spinal Cord Injury: Results From a Mixed Methods Feasibility Evaluation.

BACKGROUND: Individuals with spinal cord injury (SCI) are at high risk of experiencing secondary conditions like pressure injuries. Self-management programs may reduce the risk of complications, but traditional programs have proven to be insufficiently tailored to the needs of people with SCI. To overcome barriers to self-management support, a web-based, self-management program was developed for Canadians with SCI called SCI & U. OBJECTIVE: This study aims to evaluate the feasibility and potential impact of the SCI & U program in the context of a mixed methods pilot study. METHODS: The study followed an explanatory, sequential mixed methods design. Participants (N=11) were Canadians with SCI who had been living in the community for more than 1 year. Each took part in a self-paced, six-session self-management program guided by a trained peer health coach. During sessions, participants could discuss a health topic with their coach from a predefined list (eg, skin or bowel management). Quantitative data were gathered before and after program participation to assess program feasibility and impact. Feasibility measures included attrition rates, frequency of topics selected, and recorded goals, whereas impact measures included measures of self-efficacy (University of Washington Self-Efficacy Scale [UW-SES]), mood (Personal Health Questionnaire Depression Scale [PHQ-8]), secondary conditions (Spinal Cord Injury Secondary Conditions Scale [SCI-SCS]), and resilience (Spinal Cord Injury Quality of Life Resilience Scale [SCI-QOL-R]). Qualitative measures were based on postintervention interviews; these were designed to confirm and expand on quantitative. RESULTS: Of the 11 participants, 10 completed pre- and postassessments, and 6 coaching sessions. Sessions lasted between 31 and 81 min (average 55, SD 13), and the duration of the program ranged from 35 to 88 days (average 56, SD 23). Diet and exercise were selected as topics 40% (20/50 sessions with topics) of the time, whereas topics such as mental health, bladder management, pain, and bowel management were chosen less frequently. Results gathered before and after the pilot study demonstrated improvements with moderate effect sizes on the UW-SES and the electronic health literacy scale (ie, Hedges g>0.5). Effect sizes for measures of resilience (SCI-QOL-R), depression (PHQ-8), and secondary conditions (SCI-SCS) were small (ie, Hedges g>0.3). Qualitative results confirmed a common focus on diet and exercise, and defined coaches as sources of accountability, information, reassurance and affirmation, and emotional and technical support. CONCLUSIONS: Results demonstrated that a web-based self-management program is feasible and acceptable by Canadians with SCI. Results also indicated a web-based, peer-led self-management program may impact resilience, self-efficacy, mood, and secondary complications. Finally, results illuminated the role of the coach in facilitating behavior change. Future work seeks to validate results in the context of a randomized controlled trial.

Participatory Design of an Online Self-Management Tool for Users With Spinal Cord Injury: Qualitative Study.

BACKGROUND: Rehospitalization rates resulting from secondary conditions in persons with spinal cord injuries (SCI) are high. Self-management programs for many chronic conditions have been associated with decreases in hospital readmissions. However, in the SCI community, evidence suggests that satisfaction with traditional self-management programs is low. Users with SCI have indicated preference for programs that are online (rather than in-person), that target SCI-specific concerns, and are led by peers with SCI. There is currently no program with all of these features, which addresses self-management of secondary conditions after SCI. OBJECTIVE: The aim of this study was to provide details of a participatory design (PD) process for an internet-mediated self-management program for users with SCI (called SCI & U) and illustrate how it has been used to define design constraints and solutions. METHODS: Users were involved in development as codesigners, codevelopers, and key informants. Codesigners and codevelopers were recruited from consumer advocacy groups and worked with a core development team. Key informants were recruited from geographically distributed advocacy groups to form a product advisory council that met regularly with the core team. During meetings, codesigners and informants walked through stages of work that typify PD processes such as exploration, discovery, and prototyping. This paper details the process by analyzing 10 meetings that took place between August 2015 and May 2016. Meetings were recorded, transcribed, and subjected to an inductive thematic analysis; resulting themes were organized according to their relationship to PD stages. RESULTS: A total of 16 individuals participated in meeting discussions, including 7 researchers and 9 persons with SCI from 4 Canadian provinces. Themes of trust, expertise, and community emerged in every group discussion. The exploration stage revealed interest in online self-management resources coupled with concerns about information credibility. In general, participants indicated that they felt more confident with information received from trusted, in-person sources (eg, peers or health care professionals) than information found online. The discovery stage saw participants propose and discuss concepts to filter credible information and highlight community expertise, namely (1) a community-curated resource database, (2) online information navigators, and (3) group chats with peers. Several tools and techniques were collectively prototyped in an effort to foster trust and community; these are illustrated in the Results section. CONCLUSIONS: A PD process engaging users as codesigners, codevelopers, and informants can be used to identify design concerns and prototype online solutions to promote self-management after SCI. Future work will assess the usability of the collectively designed tools among a broad population of Canadians with SCI and the tools' impact on self-efficacy and health.

Online peer support interventions for chronic conditions: a scoping review protocol.

INTRODUCTION: Peer support is receiving increasing attention as both an effective and cost-effective intervention method to support the self-management of chronic health conditions. Given that an increasing proportion of Canadians have internet access and the increasing implementation of web-based interventions, online peer support interventions are a promising option to address the burden of chronic diseases. Thus, the specific research question of this scoping review is the following: What is known from the existing literature about the key characteristics of online peer support interventions for adults with chronic conditions? METHODS AND ANALYSIS: We will use the methodological frameworks used by Arksey and O'Malley as well as Levac and colleagues for the current scoping review. To be eligible for inclusion, studies must report on adults (≥18 years of age) with one of the Public Health Agency of Canada chronic conditions or HIV/AIDS. We will limit our review to peer support interventions delivered through online formats. All study designs will be included. Only studies published from 2012 onwards will be included to ensure relevance to the current healthcare context and feasibility. Furthermore, only English language studies will be included. Studies will be identified by searching a variety of databases. Two reviewers will independently screen the titles and abstracts identified by the literature search for inclusion (ie, level 1 screening), the full text articles (ie, level 2 screening) and then perform data abstraction. Abstracted data will include study characteristics, participant population, key characteristics of the intervention and outcomes collected. DISSEMINATION: This review will identify the key features of online peer support interventions and could assist in the future development of other online peer support programmes so that effective and sustainable programmes can be developed.

Using the theoretical domains framework to guide the development of a self-management program for individuals with spinal cord injury: Results from a national stakeholder advisory group.

OBJECTIVE: To determine the implementation considerations for a targeted self-management program for individuals with spinal cord injury (SCI) from the perspective of a national stakeholder advisory group using the Theoretical Domains Framework (TDF) as a guide. DESIGN: Qualitative descriptive approach. SETTING: Two focus groups held at the 6th National Spinal Cord Injury Conference (October 2-4th, 2014) in Toronto, Ontario, Canada. PARTICIPANTS: A total of 25 stakeholders from across Canada participated in focus groups or "brainstorming sessions". The stakeholders included 5 clinicians, 14 researchers, 3 policy makers, and 3 individuals with SCI. INTERVENTIONS: Not applicable. OUTCOME MEASURES: Not applicable. RESULTS: All 14 theoretical domains were identified in the brainstorming sessions. No new themes or domains were identified. The need to consider the theoretical domains of Knowledge, Skills, Reinforcement, Intentions, Goals (e.g. the readiness of the individual with SCI), Environmental Context and Resources (e.g. considerations for governance and ownership of the program and a business model for sustainability), as well as Social Influences (e.g. issues of privacy and security in the context of on-line delivery) was identified. CONCLUSIONS: The current study provides complementary results to our previous series of studies on the implementation considerations for the development of a targeted self-management program for individuals with SCI by emphasizing the health care professional/health policy perspective. It is anticipated that such a program could not only reduce secondary complications and subsequent inappropriate health care use but it may also improve the quality of life for individuals with SCI and their caregivers.

Evaluation of Automated Fracture Risk Assessment Based on the Canadian Association of Radiologists and Osteoporosis Canada Assessment Tool.

Fracture risk assessments are not always clearly communicated on bone mineral density (BMD) reports; evidence suggests that structured reporting (SR) tools may improve report clarity. The aim of this study is to compare fracture risk assessments automatically assigned by SR software in accordance with Canadian Association of Radiologists and Osteoporosis Canada (CAROC) recommendations to assessments from experts on narrative BMD reports. Charts for 500 adult patients who recently received a BMD exam were sampled from across University of Toronto's Joint Department of Medical Imaging. BMD measures and clinical details were manually abstracted from charts and were used to create structured reports with assessments generated by a software implementation of CAROC recommendations. CAROC calculations were statistically compared to experts' original assessments using percentage agreement (PA) and Krippendorff's alpha. Canadian FRAX calculations were also compared to experts', where possible. A total of 25 (5.0%) reported assessments did not conform to categorizations recommended by Canadian guidelines. Across the remainder, the Krippendorff's alpha relating software assigned assessments to physicians was high at 0.918; PA was 94.3%. Lower agreement was associated with reports for patients with documented modifying factors (alpha = 0.860, PA = 90.2%). Similar patterns of agreement related expert assessments to FRAX calculations, although statistics of agreement were lower. Categories of disagreement were defined by (1) gray areas in current guidelines, (2) margins of assessment categorizations, (3) dictation/transcription errors, (4) patients on low doses of steroids, and (5) ambiguous documentation of modifying factors. Results suggest that SR software can produce fracture risk assessments that agree with experts on most routine, adult BMD exams. Results also highlight situations where experts tend to diverge from guidelines and illustrate the potential for SR software to (1) reduce variability in, (2) ameliorate errors in, and (3) improve clarity of routine adult BMD exam reports.

Understanding Referral Patterns for Bone Mineral Density Testing among Family Physicians: A Qualitative Descriptive Study.

Introduction. Evidence of inappropriate bone mineral density (BMD) testing has been identified in terms of overtesting in low risk women and undertesting among patients at high risk. In light of these phenomena, the objective of this study was to understand the referral patterns for BMD testing among Ontario's family physicians (FPs). Methods. A qualitative descriptive approach was adopted. Twenty-two FPs took part in a semi-structured interview lasting approximately 30 minutes. An inductive thematic analysis was performed on the transcribed data in order to understand the referral patterns for BMD testing. Results. We identified a lack of clarity about screening for osteoporosis with a tendency for baseline BMD testing in healthy, postmenopausal women and a lack of clarity on the appropriate age for screening for men in particular. A lack of clarity on appropriate intervals for follow-up testing was also described. Conclusions. These findings lend support to what has been documented at the population level suggesting a tendency among FPs to refer menopausal women (at low risk). Emphasis on referral of high-risk groups as well as men and further clarification and education on the appropriate intervals for follow-up testing is warranted.

Acceptability and Feasibility of an Evidence-Based Requisition for Bone Mineral Density Testing in Clinical Practice.

Introduction. The purpose of this study is to understand the experience of primary care providers (PCPs) using an evidence-based requisition for bone mineral density (BMD) testing. Methods. A qualitative descriptive approach was adopted. Participants were given 3 BMD Recommended Use Requisitions (RUR) to use over a 2-month period. Twenty-six PCPs were interviewed before using the RUR. Those who had received at least one BMD report resulting from RUR use were then interviewed again. An inductive thematic analysis was performed. Results. We identified four themes in interview data: (1) positive and negative characteristics of the RUR, (2) facilitators and barriers for implementation, (3) impact of the RUR, and (4) requisition preference. Positive characteristics of the RUR related to both its content and format. Negative characteristics related to the increased amount of time needed to complete the form. Facilitators to implementation included electronic availability and organizational endorsement. Time constraints were identified as a barrier to implementation. Participants perceived that the RUR would promote appropriate referrals and the majority of participants preferred the RUR to their current requisition. Conclusions. Findings from this study provide support for the RUR as an acceptable point-of-care tool for PCPs to promote appropriate BMD testing.

Impact of a change in physician reimbursement on bone mineral density testing in Ontario, Canada: a population-based study.

BACKGROUND: On Apr. 1, 2008, a revision was made to the fee schedule for bone mineral density testing with dual-energy x-ray absorptiometry (DXA) in the province of Ontario, Canada, reducing the frequency of repeat screening in individuals at low risk of osteoporosis. We evaluated whether the change in physician reimbursement successfully promoted appropriate bone mineral density testing, with reduced use among women at low risk and increased use among women and men at higher risk of osteoporosis-related fracture. METHODS: We analyzed data from administrative databases on physician billings, hospital discharges and emergency department visits. We included all physician claims for DXA in the province to assess patterns in bone mineral density testing from Apr. 1, 2002, to Mar. 31, 2011. People at risk of an osteoporosis-related fracture were defined as women and men aged 65 years or more and those who had a recent (< 6 mo) fracture after age 40 years. Joinpoint regression analysis was used to examine trends in DXA testing. RESULTS: Before the policy change, the overall number of DXA tests increased from 433 419 in 2002/03 to 507 658 in 2007/08; after revision of the fee schedule, the number decreased to 422 915 by 2010/11. Most of this reduction was due to a decrease in the age-standardized rate of DXA testing among women deemed to be at low risk, from 5.7 per 100 population in 2008/09 to 1.8 per 100 in 2010/11. In the high-risk group of people aged 65 or more, the age-standardized rate of testing increased after the policy change among men but decreased among women. Among those at high risk because of a recent clinical fracture, the age-standardized rate of DXA testing increased for both sexes and then decreased after the policy change. INTERPRETATION: A change in reimbursement designed to restrict access to bone mineral density testing among low-risk women was associated with an overall reduction in testing. Efforts to communicate guidelines for bone mineral density testing with greater clarity, particularly as they relate to high-risk individuals, need to be explored.

Capture of osteoporosis and fracture information in an electronic medical record database from primary care.

In a large database of EMR records, we explore: 1) completeness in capture of bone mineral density (BMD) T-scores required for diagnosis of osteoporosis; 2) concordance of BMD exam information with other osteoporosis information; and 3) evidence of osteoporosis screening among fracture patients. To explore completeness of exam capture, BMD exams in the EMR were related to a provincial billing database. To explore concordance of information and screening rates, 7500 EMR records were reviewed for osteoporosis and fracture details. Results show that 98% of exams billed to the province for EMR patients were found in the EMR. However, documented osteoporosis was substantiated with BMD results only 55.8% of the time. Of 151 charts for fragility fracture patients, 1 in 4 contained no evidence of osteoporosis investigation. In summary, while EMR information about osteoporosis is of variable quality, EMR records shed light on osteoporosis management indicators and completely capture BMD results.

Robust tracking of the upper limb for functional stroke assessment.

We present a robust 3-D parts-based (PB) tracking system designed to follow the upper limb of stroke survivors during desktop activities. This system fits a probabilistic model of the arm to sequences of images taken from multiple angles. The arm model defines shapes and colors of limbs and limb configurations that are more or less likely. We demonstrate that the system is 1) robust to cluttered scenes and temporary occlusions, 2) accurate relative to a commercial motion capture device, and 3) capable of capturing kinematics that correlate with concurrent measures of post-stroke limb function. To evaluate the PB system, the functional motion of seven stroke survivors was measured concurrently with the PB system and a commercial motion capture system. In addition, functional motion was assessed by an expert using the Fugl-Meyer Assessment (FMA) and related to recorded kinematics. Standard deviation of differences in measured elbow angles between systems was 5.7°; deviation in hand velocity estimates was 2.6 cm/s. Several statistics, moreover, correlated strongly with FMA scores. Standard deviation in shoulder velocity had a significant correlation coefficient with FMA score below -0.75 when measured with all systems.

Recent trends in the development and evaluation of assistive robotic manipulation devices.

This review explores recent trends in the development and evaluation of assistive robotic arms, both prosthetic and externally mounted. Evaluations have been organized according to the CATOR taxonomy of assistive device outcomes, which takes into consideration device effectiveness, social significance, and impact on subjective well-being. Questions that have informed the review include: (1) Are robotic arms being comprehensively evaluated along axes of the CATOR taxonomy? (2) Are definitions of effectiveness in accordance with the priorities of users? (3) What gaps in robotic arm evaluation exist, and how might these best be addressed? (4) What further advances can be expected in the next 15 years? Results highlight the need for increased standardization of evaluation methods, increased emphasis on the social significance (i.e., social cost) of devices, and increased emphasis on device impact on quality of life. Several open areas for future research, in terms of both device evaluation and device development, are also discussed.

Video based analysis of standing balance in a community center.

Postural sway is a well known measure of postural stability in the elderly. Sway measurements, however, are typically made using expensive equipment in a laboratory. We report on efforts to make clinically significant and quantitative measurements of postural sway in a community center with a single un-calibrated video camera. Results indicate that simple tracking technologies can capture some aspects of sway in a community center in a way that is perceptually accurate and capable of distinguishing expert-assigned levels of balance performance in an elderly, balance impaired cohort.

The tolerance for visual feedback distortions in a virtual environment.

We are interested in using a virtual environment with a robotic device to extend the strength and mobility of people recovering from strokes by steering them beyond what they had thought they were capable of doing. Previously, we identified just noticeable differences (JND) of a finger's force production and position displacement in a virtual environment. In this paper, we extend this investigation by identifying peoples' tolerance for distortions of visual representations of force production and positional displacement in a virtual environment. We determined that subjects are not capable of reliably detecting inaccuracies in visual representation until there is 36% distortion. This discrepancy between actual and perceived movements is significantly larger than the JNDs reported in the past, indicating that a virtual robotic environment could be a valuable tool for steering actual movements further away from perceived movements. We believe this distorted condition may allow people recovering from strokes, even those who have perceptual or cognitive deficits, to rehabilitate with greater ease.