2017 Grant Awards
The posters and papers listed below each grant arise from work facilitated through the grant funding.
The Scleroderma Support Group Leader Education (SSLED) Program Feasibility Trial: A Scleroderma Patient-centered Intervention Network (SPIN) Project
Principal Investigator: Thombs, B; Hudson, M.
Co-investigators: Platt, R; Malcarne, V; El-Baalbaki, G; Pelaez, S; Richard, M; Sauve, M; Connolly, K; McCusker, A; Dyas, L; Elrod, S; Fortune, C; Gottesman, K; Stephens, N.
Support groups provide important benefits to people with burdensome medical conditions, like SSc, based on the principle that people facing similar challenges can empower one another through emotional and practical support. Currently, approximately 275 SSc support groups with approximately 350 leaders and co-leaders are affiliated with our SSc patient organization partners. An educational training program could provide the necessary information and skills to SSc peer leaders to improve their ability to lead sustainable, effective groups, and reduce their emotional and physical burden.
Ten SSc support group leaders associated with our partner organizations were recruited to complete the SPIN-SSLED program feasibility trial. For 13 weeks from mid-April through mid-July 2018, two groups of 5 leaders met through videoconference for 60-90-minute sessions. We collected pre-training and post-training data on leader’s self-efficacy, burnout, emotional distress, physical function and participant satisfaction. Additionally, interviews assessed accessibility, the barriers to participating and leaders’ experience participating in the intervention.
By the end of training, leaders saw increased self-efficacy scores from pre-training indicating greater confidence in their ability to complete leadership tasks, while health outcome measures showed moderate reduction of burden on leaders. Overall, satisfaction was quite high with a mean score of 3.83 out of 4 on the CSQ-8 items and mean grade of 9.4/10 was given by program participants.
The feasibility trial showed that the SPIN-SSLED program may improve leader self-efficacy and health outcomes in SSc support group leaders and ensured that trial methodology was robust, feasible, and that the online intervention is user-friendly and acceptable to participants. If these results are replicated in our full-scale trial, the intervention will be disseminated via our patient organization partners and will give confidence to health care providers that they can refer patients to SSc support groups.
- Supporting Support Group Leaders: The SPIN Scleroderma Support Group Leader Education (SSLED) Program. 18th Bi-Annual National Scleroderma Conference. Calgary, Alberta, Canada. September 21, 2018.
- The Scleroderma Patient-centered Intervention Network – Support Group Leader Education Program (SPIN-SSLED). Scleroderma Foundation (USA) Monthly Chapter Meeting. Teleconference. October 4, 2018.
- The SPIN Scleroderma Support Group Leader Education (SSLED) Program. Scleroderma Foundation of Southern California Annual Board Meeting. Marina Del Rey, California, USA. December 8, 2018.
Presented at the 2019 Canadian Rheumatology Association meeting.
- Addressing Challenges to Patient-centered Care in a Rare Disease Context: The Scleroderma Patient-centered Intervention Network (SPIN) (PDF)
- Feasibility Trial of the Scleroderma Patient-centered Intervention Network Support Group Leader Education (SPIN-SSLED) Program (PDF)
- The Scleroderma Patient-centered Intervention Network (SPIN): Engaging Patients in Rheumatology Research (PDF)