The Scleroderma Patient-centered Intervention Network - Scleroderma Support Group Leader EDucation Program Trial (SPIN-SSLED)

People with rare diseases face the same challenges as those with more common diseases plus unique challenges, including limited disease education and lack of specialized support options. Professionally organized support services for common diseases are often available through the healthcare system, but are not typically available in rare diseases. As a result, many people with rare diseases look to peer-led support groups for disease-specific education and support.

Support groups provide important benefits to people with burdensome medical conditions, based on the principle that people who face similar challenges can empower one another through emotional and practical support. Support groups may be held face-to-face or online, led by professionals or peers, and have a structured or an unstructured format. Activities typically involve an educational or information-sharing component and the exchange of emotional and practical support.

Systemic sclerosis (SSc), or scleroderma, is a rare, chronic, autoimmune connective tissue disease characterized by abnormal fibrotic processes and excessive collagen production. Peer-led support groups play an important role for many people with SSc. Currently, there are approximately over 250 leaders and co-leaders affiliated with SPIN-SSLED's partners Scleroderma Canada and Canadian provincial organizations, including Sclérodermie Québec, the Scleroderma Foundation (United States), Scleroderma & Raynaud's UK (United Kingdom), Scleroderma Australia and Australian state organizations, and Scleroderma New Zealand, almost all led by people with SSc. Many people with SSc, however, cannot access support groups, and many initiated support groups are not sustained due to challenges that could be addressed via leader training. SPIN partner organizations are committed to improving support group quality and access by providing training to existing support group leaders and to new leaders to start groups in underserved areas and via the Internet.

The SPIN-SSLED Program was developed by a team of researchers with expertise in SSc, patient organization representatives, and a Patient Advisory Board comprised of current SSc support group leaders. The program content and design are based on results of SPIN's preliminary research on support groups in SSc and informed by instructional material for support group leaders SPIN identified via the internet and by consultations with support group leaders. The program uses a problem-based learning approach. Problem-based learning is a learner-centered approach that integrates theory and practice by providing the necessary knowledge and skills, presenting a complex, real-world problem, then working to identify an approach to solving the problem. To implement this, each module, or learning session, will introduce a topic and provide an overview of key information. Then, there will be a guided discussion among training group participants about possible approaches and solutions. The program includes 13 modules that will be delivered live via webinar over the course of the 3-month program. In addition to the live modules, SPIN-SSLED participants will receive a workbook that summarizes didactic material that is provided and will be shown filmed vignettes demonstrating effective group facilitation techniques and ways to respond to support group issues. SPIN-SSLED participants will also have access to an online resource center that includes a range of helpful tools for leaders including files of SSc related videos to show at meetings and an online forum for leaders to post questions, open only to leaders enrolled in the training program.

The aim of the SPIN-SSLED Trial is to assess the effectiveness of the SPIN-SSLED Program on scleroderma support group leaders' self-efficacy (primary outcome), which SPIN defined as their perceived ability to carry out actions needed to be successful in support group leadership, burnout and emotional well-being. Additionally, participants will be asked about their satisfaction with the program.