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Scleroderma Patient-centered Intervention Network-Scleroderma Support group Leader EDucation (SPIN-SSLED) program:
Brett D Thombs1,2,3,4,5,6,7, Laura Dyas8, Mia Pépin9
1Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, Québec, Canada brett.thombs@mcgill.ca.
BMJ Open
|November 14, 2019
Summary
The Scleroderma Support group Leader EDucation (SPIN-SSLED) Programme effectively trained support group leaders, showing high participant satisfaction and improved self-efficacy. This program is ready for a full-scale trial to enhance scleroderma patient support.
Area of Science:
- Rheumatology
- Patient Support Programs
- Health Education
Background:
- Scleroderma support group leaders require specific skills and confidence to effectively manage their groups.
- Existing training programs may not adequately address the unique needs and challenges faced by scleroderma support group leaders.
- The Scleroderma Patient-centered Intervention Network-Scleroderma Support group Leader EDucation (SPIN-SSLED) Programme was developed to address these gaps.
Purpose of the Study:
- To evaluate the feasibility of delivering the SPIN-SSLED Programme, assessing resource requirements, management, and scientific aspects.
- To gauge user satisfaction with the programme and identify areas for improvement in content and delivery.
- To prepare for a larger randomized controlled trial by testing the intervention's viability.
Main Methods:
- A non-randomized feasibility trial involving current or potential North American scleroderma support group leaders.
- The SPIN-SSLED Programme consisted of 13 modules delivered via videoconference over three months.
- Outcomes included feasibility metrics (enrollment, attendance), participant satisfaction (Client Satisfaction Questionnaire-8), and changes in self-efficacy, burnout, emotional distress, and physical function.
Main Results:
- High feasibility was demonstrated, with 100% enrollment and 95% session attendance; technical support needs were minimal.
- Participants reported high overall satisfaction (9.4/10) and high ratings on the Client Satisfaction Questionnaire-8 (mean 3.83/4).
- Significant improvements were observed in leader self-efficacy (large effect size) and moderate improvements in burnout, emotional distress, and physical function.
Conclusions:
- The SPIN-SSLED Programme is a feasible and well-received training initiative for scleroderma support group leaders.
- High participant satisfaction and positive preliminary outcomes support the programme's readiness for a full-scale randomized controlled trial.
- The programme effectively enhances leader confidence and self-efficacy, contributing to better patient support.
