Abstract
BackgroundPeer-led support groups play an important role in supporting people with chronic diseases. They may be particularly important for people with rare diseases who typically do not have access to professional support options that focus on their disease-specific needs. Many peer-led support groups in rare diseases, however, are not sustained, and many patients do not have access to support groups. Training and education for peer support group leaders could address barriers to initiating and sustaining groups, but there is little evidence on the effectiveness of support group leader training programs. A previous systematic review evaluated the effects of training programs for peer leaders of support groups for people with medical illness on leader and support group outcomes, but it identified only one randomized controlled trial (RCT) that compared high- and low-resource training programs for cancer support group leaders. The trial did not find evidence that the high-resource program was more effective, but was limited by a small sample size and serious methodological limitations. To meet the needs of people living with the rare autoimmune connective tissue disease scleroderma, the Scleroderma Patient-centered Intervention Network has partnered with patient organizations to develop the Scleroderma Support group Leader EDucation Program, and a full-scale RCT to test the effectiveness of the program is planned. To verify the need for such a trial, we updated the previous systematic review.Updated evidenceReview methods for the update were unchanged from the initial review. The updated database search yielded 1504 unique citations in addition to the 9757 assessed for eligibility in the previous review. All additional citations identified in the updated search were excluded at the title and abstract review stage.ConclusionsOur systematic review update found that there is presently insufficient evidence on the effectiveness of training and support programs for peer leaders of disease-based support groups, highlighting the need for well-designed and rigorously conducted RCTs to examine the effects of training for peer leaders of support groups, especially in a rare disease context. The Scleroderma Patient-centered Intervention Network’s trial of the Scleroderma Support group Leader EDucation Program will serve as such a trial.Systematic review registrationPROSPERO CRD42018096369
Highlights
Peer-led support groups play an important role in supporting people with chronic diseases
Our systematic review update found that there is presently insufficient evidence on the effectiveness of training and support programs for peer leaders of disease-based support groups, highlighting the need for welldesigned and rigorously conducted randomized controlled trial (RCT) to examine the effects of training for peer leaders of support groups, especially in a rare disease context
In a previous systematic review published in 2016 [8], we searched for evidence on whether training programs for peer leaders of support groups for people with medical illnesses (1) increase the competency and self-efficacy of leaders and (2) improve health outcomes and satisfaction with support groups among support group members
Summary
Peer-led support groups play an important role in supporting those who do not have access to professional support to provide educational and coping resources, which is often the case in rare diseases such as SSc. The SPIN-SSLED trial is intended to fill this knowledge gap by testing a program that is designed for support group leaders with the rare autoimmune disease scleroderma, but, if successful, will be adapted for other patient groups. 6. Kwakkenbos L, Jewett LR, Baron M, et al The Scleroderma Patient-centered Intervention Network (SPIN): protocol for a cohort multiple randomised controlled trial (cmRCT) design to support trials of psychosocial and rehabilitation interventions in a rare disease context.
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
