Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network hand exercise program (SPIN-HAND).

Purpose: The Scleroderma Patient-centered Intervention Network (SPIN) online hand exercise program (SPIN-HAND), is an online self-help program of hand exercises designed to improve hand function for people with scleroderma. The objective of this feasibility trial was to evaluate aspects of feasibility for conducting a full-scale randomized controlled trial of the SPIN-HAND program. Materials and Methods: The feasibility trial was embedded in the SPIN cohort and utilized the cohort multiple randomized controlled trial (cmRCT) design. In the cmRCT design, at the time of cohort enrollment, cohort participants consent to be assessed for trial eligibility and randomized prior to being informed about trials conducted using the cohort. When trials were conducted in the cohort, participants randomized to the intervention were informed and consented to access the intervention. Participants randomized to control were not informed that they have not received an intervention. All participants eligible and randomized to participate in the trial were included in analyses on an intent-to-treat basis. Cohort participants with a Cochin Hand Function Scale score ≥ 3/90 and an interest in using an online hand-exercise intervention were randomized (1:1 ratio) to be offered as usual care plus the SPIN-HAND Program or usual care for 3 months. User satisfaction was assessed with semi-structured interviews. Results: Of the 40 randomized participants, 24 were allocated to SPIN-HAND and 16 to usual care. Of 24 participants randomized to be offered SPIN-HAND, 15 (63%) consented to use the program. Usage of SPIN-HAND content among the 15 participants who consented to use the program was low; only five (33%) logged in more than twice. Participants found the content relevant and easy to understand (satisfaction rating 8.5/10, N = 6). Automated eligibility and randomization procedures via the SPIN Cohort platform functioned properly. The required technical support was minimal. Conclusions: Trial methodology functioned as designed, and the SPIN-HAND Program was feasibly delivered; however, the acceptance of the offer and use of program content among accepters were low. Adjustments to information provided to potential participants will be implemented in the full-scale SPIN-HAND trial to attempt to increase offer acceptance.

Reasons for not participating in scleroderma patient support groups: a comparison of results from the North American and European scleroderma support group surveys.

PURPOSE: Many people with scleroderma rely on peer-led support groups as a coping resource. Reasons for not attending support groups in scleroderma have been investigated only in North American participants. This study assesses reasons for nonattendance in European countries and compares results with previously published North American findings. MATERIALS AND METHODS: The same 21-item survey as used in the North American sample assessed possible reasons for not attending scleroderma support groups. Proportions of items rated Important or Very Important were compared between samples. RESULTS: Consistent with the North American survey findings (N = 242), the two items most commonly rated as (Very) Important reasons for nonattendance among 228 European participants were (1) already having enough support (57%), and (2) not knowing of any local scleroderma support groups (58%). Compared to North American non-attenders, European patients were significantly more likely to rate not knowing enough about what happens at support groups (46% vs 19%), not having reliable ways to get to meetings (35% vs 17%), and being uncomfortable sharing experiences with a group (22% vs 11%) as (Very) Important reasons for nonattendance. CONCLUSIONS: Improving access to European support groups, providing education about support groups and group leader training may encourage participation.IMPLICATIONS FOR REHABILITATIONRehabilitation professionals might help develop local support groups for people with systemic sclerosis (scleroderma) to address the lack of access to these groups for many patients.The need for transportation and limited local accessibility may also be addressed by implementing online systemic sclerosis support groups.Professionals in the field of rehabilitation may work with people with systemic sclerosis and patient organizations to provide education about support groups to improve support group attendance in Europe.

Scleroderma Patient-centered Intervention Network-Scleroderma Support group Leader EDucation (SPIN-SSLED) program: non-randomised feasibility trial.

OBJECTIVES: The Scleroderma Patient-centered Intervention Network-Scleroderma Support group Leader EDucation (SPIN-SSLED) Programme was designed to improve confidence and self-efficacy and to reduce burden for support group leaders. Objectives were to (1) evaluate feasibility of programme delivery, including required resources, management issues and scientific aspects (eg, performance of outcome measures) and (2) assess user satisfaction and identify any modifications needed to improve programme content or delivery based on participant feedback. DESIGN: Non-randomised feasibility trial. SETTING: North American patient organisations. PARTICIPANTS: Current support group leaders or potential new leaders referred by patient organisations. INTERVENTION: The programme included 13 modules delivered live via videoconference over 3 months (April to July 2018) in 60 to 90 min sessions. OUTCOME MEASURES: (1) Elements of feasibility, including enrolment and consent procedures, percentage of referred group leaders who consented to participate, session attendance and technical support requirements; (2) programme usability, understandability, organisation and clarity; (3) leader satisfaction with the programme and (4) planned trial outcome measures, including support group leader self-efficacy, burnout, emotional distress and physical function. RESULTS: All 12 referred potential participants consented to enrol, and 10 were included in two training groups of five participants each. Participants attended 95% of sessions. Required technical support was minimal, and videoconferencing technology functioned well. Overall programme satisfaction rating was 9.4/10. Mean item rating on the eight items of the Client Satisfaction Questionnaire-8 was 3.83 (1=low satisfaction; 4=high satisfaction). Pre-post scores on the Scleroderma Support Group Leader Self-efficacy Scale increased by 1.7 SDs (large effect); scores on burnout, emotional distress and physical function improved by 0.44, 0.38 and 0.45 SDs (moderate effects). CONCLUSION: The SPIN-SSLED Programme was feasibly delivered, including management, resource and scientific aspects. Participant satisfaction was high. The programme is ready to be tested in a full-scale randomised controlled trial. TRIAL REGISTRATION NUMBER: NCT03508661.

Training and support needs of scleroderma support group facilitators: the North American Scleroderma Support Group Facilitators Survey.

Purpose: Peer-facilitated support groups are an important resource for people with scleroderma, but little is known about challenges faced by support group facilitators. The objective was to identify training and support needs of scleroderma support group facilitators to inform the development of an educational training program. Methods: A 32-item survey assessed confidence of support group facilitators to execute tasks necessary for successfully facilitating support groups. Survey items were grouped into seven themes using content analysis. Results: Eighty North American scleroderma support group facilitators completed the survey. Facilitators were generally confident in their ability to complete tasks related to: (1) Organizing, Structuring, and Facilitating the group; (2) Addressing Individual Member Needs and Diversity of the Group; (3) Helping Members Cope with Grief and Loss; and (4) Attaining and Responding to Member Feedback. They were less confident in their ability to perform tasks related to (1) Managing Difficult Group Dynamics; (2) Promoting and Sustaining the Group; and (3) Balancing Personal and Group Needs. Conclusion: Results suggest that a training program for scleroderma support group facilitators should address a broad range of topics, including managing difficult group interactions, promotion and maintaining the group, and balancing personal and support group needs. Implications for Rehabilitation Many patients with the rare autoimmune connective tissue disease scleroderma depend on peer-facilitated support groups for disease-related education and peer support, but the lack of training for facilitators is a barrier to forming and sustaining groups. Rehabilitation professionals can support the formation and management of local support groups by providing education and support to peer group facilitators or by referring them to national scleroderma organizations who are developing training resources. Training for support group facilitators should focus on areas where facilitators were least confident in their abilities, including managing difficult group dynamics, promoting and sustaining the group, and balancing personal and group needs.

Reasons for attending support groups and organizational preferences: the European scleroderma support group members survey.

PURPOSE: The objectives were to identify reasons why patients attend scleroderma support groups and to ascertain preferences for how meetings are best organized. METHODS: The survey included 30-items on reasons for attending and nine items on organizational preferences. Patients were recruited through European patient organizations. Exploratory factor analysis was used to group reasons for attendance thematically. RESULTS: About 213 scleroderma patients (192 women) completed the survey. A three-factor model best described reasons for attending [χ2(348) = 586.1, p < 0.001; Comparative Fit Index = 0.98; Tucker Lewis Index = 0.97; Root Mean Square Error of Approximation = 0.06] with themes that included: (1) obtaining interpersonal and social support, (2) learning about treatment and symptom management strategies, and (3) discussing other aspects of scleroderma. Among organizational preferences, respondents emphasized that meetings should include educational aspects and the opportunity to share information and support. CONCLUSION: People with scleroderma attend support groups to give and obtain social support and for education about managing their disease and other aspects of living with scleroderma. Support groups should be structured to facilitate both educational and informational aspects and to provide opportunities for sharing and support between members. Implications for rehabilitation Local peer-led support groups are an important support and informational resource for patients living with scleroderma. People with scleroderma attend support groups in order to: (1) obtain interpersonal and social support, (2) learn about disease treatment and symptom management strategies, and (3) discuss other aspects of living with scleroderma outside of symptom management. Most support group members prefer groups with a trained facilitator, that include family members or loved ones in the groups, that include between 11and 20 members, that last between 1 and 2 h, and that meet once every 1-3 months. Rehabilitation professionals can support the formation and management of local support groups or can refer patients to national scleroderma patient organizations for information on support groups that they may be able to access.

Reasons for attending support groups and organizational preferences: A replication study using the North American Scleroderma Support Group Survey.

Peer-facilitated support groups are an important source for receiving disease-related information and support for people with systemic sclerosis (or scleroderma). A recent survey explored reasons for attending systemic sclerosis support groups in Europe and Australia and used exploratory factor analysis to group reasons for attendance into three main themes: (1) interpersonal and social support, (2) disease treatment and symptom management strategies, and (3) other aspects of living with systemic sclerosis. The objective of the present study was to replicate this study in a sample of patients from North America using confirmatory factor analysis. A 30-item survey was used to assess reasons for attendance and organizational preferences among systemic sclerosis patients in Canada and the United States. In total, 171 members completed the survey. In the confirmatory factor analysis, the three-factor model showed good fit to the data (χ2(399) = 646.0, p < 0.001, Tucker-Lewis index = 0.97, comparative fit index = 0.97, root mean square error approximation = 0.06). On average, respondents rated 22 (73%) of 30 items as "important" or "very important" reasons for attending support groups. Among organizational preferences, respondents emphasized the importance of the ability to share feelings and concerns, as well as educational aspects. Findings of our study suggest that reasons for attending support groups are similar for patients from Europe, Australia, and North America and that support groups should facilitate social support as well as disease education. These results inform the development of training programs for current and future systemic sclerosis support group leaders across the globe.

The Scleroderma Research Topics Survey for patients and health care professionals: A Scleroderma Patient-centered Intervention Network Project.

Involving patients and health care professionals in research has been shown to be a useful strategy to generate program development ideas and establish research priorities. Online surveys can be used to identify patient research priorities. The Scleroderma Patient-centered Intervention Network is an international collaboration dedicated to researching problems important to people with scleroderma and developing, testing, and disseminating educational, self-management, rehabilitation, and psychological tools to support coping within the disease. The objectives of the Scleroderma Patient-centered Intervention Network Scleroderma Research Topics Survey were to (1) obtain input on online programs that Scleroderma Patient-centered Intervention Network could develop, (2) identify research topics important to members of the scleroderma community that could be addressed via the Scleroderma Patient-centered Intervention Network Cohort, and (3) identify potentially understudied groups. Eligible survey respondents included individuals with scleroderma and their caregivers, health care professionals, and patient organization representatives. Responses were evaluated separately for online programs, possible research questions, and understudied groups. In each category, thematic analysis was used to group responses into themes. A total of 125 participants (100 patients, 24 health care professionals, and 1 caregiver) completed the survey, and responses from patients and health care professionals were reported. For online programs, frequent recommendations included Interactive Platforms to facilitate communication between patients, as well as interventions targeting physical activity, and emotions and stress. Common responses for possible research questions were related to calcinosis, accessing health care, and quality of life. The most common suggestions for understudied groups were young patients, minority patients, and patients with calcinosis. Research topic suggestions provided in the survey will inform Scleroderma Patient-centered Intervention Network priorities and can be considered by other researchers.

Factors associated with negative observer responses towards individuals with visible differences: A scoping review.

People with visible differences are often confronted with negative observer responses, including stares, disgust, and avoidance. Characteristics of negative observer responses are well-documented, but less is known about associated factors. We conducted a scoping review to map what is known about factors associated with negative observer responses. Web of Science, PubMed, PsycINFO, and CINAHL databases were searched, and 16 articles met inclusion criteria. Two general categories of factors were identified: (1) observer characteristics, including age, sex, and socioeconomic status, experiences with disfigurements, and personal beliefs or attitudes related to visible differences; and (2) evolved internal mechanisms, including threat-detection, disgust, and disease avoidance. Additionally, there was evidence that lack of anonymity influences lower reporting of observer reactions. Efforts that increase exposure to individuals with visible differences may ameliorate adverse reactions; however, due to the limited nature of evidence reviewed, further research is needed before more concrete recommendations can be made.

Development and preliminary validation of the Scleroderma Support Group Leader Self-efficacy Scale.

Support groups are an important resource for people living with systemic sclerosis (SSc; scleroderma). Peer support group leaders play an important role in the success and sustainability of SSc support groups, but face challenges that include a lack of formal training. An SSc support group leader training program could improve leader self-efficacy to carry out important leadership tasks, including the management of group dynamics. However, no measures exist to assess self-efficacy among SSc support group leaders. The objective of this study was to develop and provide preliminary evidence on the reliability and validity of the Scleroderma Support Group Leader Self-efficacy Scale (SSGLSS). The SSGLSS was administered to two sets of SSc support group leaders from North America, Europe, and Australia. Study 1 participants (n = 102) completed the SSGLSS only. Study 2 participants (n = 55) completed the SSGLSS and the Oldenburg Burnout Inventory (OLBI). For both studies, we evaluated internal consistency reliability using Cronbach's coefficient alpha. Convergent validity was assessed in Study 2 using Pearson correlations of the SSGLSS with the OLBI exhaustion and disengagement subscales. Cronbach's alpha was 0.96 in Study 1 and 0.95 in Study 2. Consistent with our hypotheses, there was a small negative correlation between SSGLSS scores and the OLBI exhaustion subscale (r = -0.25, p<0.01) and a moderate negative correlation between SSGLSS scores and the disengagement subscale (r = -0.38, p<0.01). These results suggest that the SSGLSS is a reliable and valid measure of self-efficacy for carrying out support group leadership tasks.

Reasons for Not Participating in Scleroderma Patient Support Groups: A Cross-Sectional Study.

OBJECTIVE: Peer-led support groups are an important resource for many people with scleroderma (systemic sclerosis; SSc). Little is known, however, about barriers to participation. The objective of this study was to identify reasons why some people with SSc do not participate in SSc support groups. METHODS: A 21-item survey was used to assess reasons for nonattendance among SSc patients in Canada and the US. Exploratory factor analysis (EFA) was conducted, using the software MPlus 7, to group reasons for nonattendance into themes. RESULTS: A total of 242 people (202 women) with SSc completed the survey. EFA results indicated that a 3-factor model best described the data (χ2 [150] = 302.7; P < 0.001; Comparative Fit Index = 0.91, Tucker-Lewis Index = 0.88, root mean square error of approximation = 0.07, factor intercorrelations 0.02-0.43). The 3 identified themes, reflecting reasons for not attending SSc support groups were personal reasons (9 items; e.g., already having enough support), practical reasons (7 items; e.g., no local support groups available), and beliefs about support groups (5 items; e.g., support groups are too negative). On average, respondents rated 4.9 items as important or very important reasons for nonattendance. The 2 items most commonly rated as important or very important were 1) already having enough support from family, friends, or others, and 2) not knowing of any SSc support groups offered in my area. CONCLUSION: SSc organizations may be able to address limitations in accessibility and concerns about SSc support groups by implementing online support groups, better informing patients about support group activities, and training support group facilitators.