Scleroderma Patient-centered Intervention Network—Scleroderma Support group Leader EDucation (SPIN-SSLED) program: non-randomised feasibility trial

Thombs, Brett D.; Dyas, Laura; Pépin, Mia; Aguila, Kylene; Carrier, Marie‐Eve; Tao, Lydia; Harb, Sami; Malcarne, Vanessa L.; El‐Baalbaki, Ghassan; Peláez, Sandra; Sauvé, Maureen; Hudson, Marie; Platt, Robert W.; Team, Spin-Ssled Patient Advisory

doi:10.1136/bmjopen-2019-029935

Cited by 12 publications

(22 citation statements)

References 52 publications

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“…We found that it had good internal consistency (Cronbach’s alpha 0.96 and 0.95) and hypothesis-consistent convergent validity with a burnout measure, the OLBI [45]. In our feasibility trial [44], SSGLSS pre-post difference was large among participants (standardized mean difference = 1.7; 1.1 point difference per item), suggesting sensitivity to change.…”

Section: Methodsmentioning

confidence: 68%

“…Based on our previous experience and consistent with previous trials of videoconference training, six support group leaders will be assigned to each training group to maximize effective interaction and participation [36, 37]. Training sessions will be delivered using the GoToMeeting® videoconferencing platform, a high-performance platform that has been used successfully in similar applications [38, 65] and that was used successfully in the SPIN-SSLED Feasibility trial [44]. In addition to the videoconference sessions, participants will have access to a secure, monitored SPIN-SSLED online forum to interact with other participants about program content and a resource center with video presentations for patients made by SSc expert physicians and other material that they can use for their support groups.…”

Section: Methodsmentioning

confidence: 99%

“…We recently conducted a feasibility trial of the SPIN-SSLED Program (ClinicalTrials.gov, NCT03508661) that involved delivery of the SPIN-SSLED Program to two training groups of five participants each [44]. Scleroderma Canada and the Scleroderma Foundation each provided the names of 6 potential participants who were current support group leaders; all 12 agreed to participate in the program.…”

Section: Introductionmentioning

confidence: 99%

“…All 10 participants completed all baseline and post-intervention measures, including an interview that addressed topics related to usability, understandability, organization and clarity of the SPIN-SSLED program. No sessions were missed or delayed due to technological difficulties, and time spent on technological support for participants from our team was < 2 h for the entire program [44].…”

Section: Introductionmentioning

confidence: 99%

“…The standardized mean difference effect size was 1.7. Items are scored on a scale of 1–6; the average item score increase pre-post training was 1.1 points [44]. Participant satisfaction was high.…”

Section: Introductionmentioning

confidence: 99%

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Protocol for a partially nested randomized controlled trial to evaluate the effectiveness of the Scleroderma Patient-centered Intervention Network Support Group Leader EDucation (SPIN-SSLED) Program

Thombs

Aguila

Dyas

et al. 2019

Trials

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BackgroundSome people with rare diseases rely on peer-led support groups for disease-specific education and emotional and practical support. Systemic sclerosis (SSc), or scleroderma, is a rare autoimmune connective tissue disease. Many people with SSc cannot access support groups, and, when support groups exist, they may not be sustained due to challenges that could be addressed via leader training. The Scleroderma Patient-centered Intervention Network (SPIN), along with SSc patient organization partners, developed a training program for SSc patient support group leaders, the Scleroderma Support group Leader EDucation (SPIN-SSLED) Program. We recently completed a feasibility trial in which we successfully delivered the program to two groups of support group leaders who reported a high level of satisfaction with the program and its delivery. The primary objective of the full-scale SPIN-SSLED trial is to evaluate the effect of the program on support group leaders’ self-efficacy for carrying out their leadership role. Secondary objectives include evaluating effects on leader burnout, leader satisfaction (participation efficacy), and emotional distress.Methods/designThe SPIN-SSLED trial is a pragmatic randomized controlled trial (RCT) in which 180 support group leaders will be randomly allocated to training groups of 6 participants each or to a waitlist control. We will use a partially nested RCT design to reflect dependence between individuals in training groups, but not in the waitlist control. Participants allocated to the training program will receive the 13-module SPIN-SSLED Program, delivered via webinar over the course of 3 months in weekly 60–90-min sessions. The primary outcome is leader self-efficacy, measured by the Scleroderma Support Group Leader Self-efficacy Scale post-intervention. Secondary outcomes are leader self-efficacy at 3 months post-intervention, and leader burnout, volunteer job satisfaction (participation efficacy), and emotional distress post-intervention and at 3 months post-intervention.DiscussionThe SPIN-SSLED trial will test whether a training program for SSc patient support group leaders increases the self-efficacy of group leaders to carry out leadership tasks. The program has the potential to significantly improve the effectiveness and sustainability of existing SSc support groups, to increase the number of available support groups, and to be adapted for other chronic diseases.Trial registrationClinicalTrials.gov, NCT03965780. Registered on 29 May 2019.

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Section: Methodsmentioning

confidence: 68%