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

People with rare diseases experience many of the same challenges as those with more common diseases, but also face unique challenges, including gaps in knowledge about their disease and limited treatment and support options. Professionally organized support services are often available for people with more common diseases but are not typically available for people with rare diseases. Instead, many people with rare diseases rely on peer-led support groups for education and to cope with their disease. 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.

SSc 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 people with the disease. There are currently approximately 200 active SSc support groups listed by Scleroderma Canada or the Scleroderma Foundation in the USA, most led by people with the disease. Many people with SSc, however, do not have access to SSc support groups, and many support groups that are initiated are not sustained due to obstacles that could be addressed by providing training to support group leaders. Challenges for patient support group leaders, particularly in rare diseases, include practical difficulties, such as a lack of resources or poor coordination with medical professionals and leader organizations; difficulties with group leadership tasks, such as managing complex group dynamics; and personal challenges, such as managing one's own health condition while supporting others and preventing burnout.

A training and education program could provide the necessary information and skills to improve the ability of SSc peer support group leaders to lead sustainable, effective support groups; reduce their emotional and physical burden; and encourage new leaders to set up support groups where none exist or via the internet. In rare diseases, face-to-face delivery of such a training program is not feasible because current and potential leaders are widely dispersed geographically. Videoconferencing has been used successfully to train educators, health service providers, and parents of children with behavioural difficulties, for example, and is as effective as face-to-face training.

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 our preliminary research on support groups in SSc and informed by instructional material for support group leaders we 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 proposed SPIN-SSLED Program Feasibility Trial builds on this background research and will evaluate the feasibility of delivering the SPIN-SSLED Program and of our planned full-scale trial design. The objectives of this study are (1) To evaluate the feasibility of steps needed to take place in the full-scale trial, including the required resources (e.g., staffing, time, and budget), management issues (e.g., related to optimizing performance of personnel and data systems), and scientific aspects (e.g., recruitment of eligible leaders, fidelity of intervention delivery, acceptability of intervention to leaders, assessing performance of outcome measures); (2) To make any necessary modifications to the SPIN-SSLED Program based on participant feedback