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. 2019 Nov 11;9(11):e029935.
doi: 10.1136/bmjopen-2019-029935.

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

Brett D Thombs  1   2   3   4   5   6   7 , Laura Dyas  8 , Mia Pépin  9 , Kylene Aguila  9 , Marie-Eve Carrier  9 , Lydia Tao  9 , Sami Harb  9 , Vanessa L Malcarne  10   11 , Ghassan El-Baalbaki  12 , Sandra Peláez  9   6 , Maureen Sauve  13 , Marie Hudson  9   4 , Robert W Platt  9   3 ; SPIN-SSLED Patient Advisory Team
Collaborators, Affiliations

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

Brett D Thombs et al. BMJ Open. .

Abstract

Objectives: The Scleroderma Patient-centered Intervention Network-Scleroderma Support group Leader EDucation (SPIN-SSLED) Programme was designed to improve confidence and self-efficacy and to reduce burden for support group leaders. Objectives were to (1) evaluate feasibility of programme delivery, including required resources, management issues and scientific aspects (eg, performance of outcome measures) and (2) assess user satisfaction and identify any modifications needed to improve programme content or delivery based on participant feedback.

Design: Non-randomised feasibility trial.

Setting: North American patient organisations.

Participants: Current support group leaders or potential new leaders referred by patient organisations.

Intervention: The programme included 13 modules delivered live via videoconference over 3 months (April to July 2018) in 60 to 90 min sessions.

Outcome measures: (1) Elements of feasibility, including enrolment and consent procedures, percentage of referred group leaders who consented to participate, session attendance and technical support requirements; (2) programme usability, understandability, organisation and clarity; (3) leader satisfaction with the programme and (4) planned trial outcome measures, including support group leader self-efficacy, burnout, emotional distress and physical function.

Results: All 12 referred potential participants consented to enrol, and 10 were included in two training groups of five participants each. Participants attended 95% of sessions. Required technical support was minimal, and videoconferencing technology functioned well. Overall programme satisfaction rating was 9.4/10. Mean item rating on the eight items of the Client Satisfaction Questionnaire-8 was 3.83 (1=low satisfaction; 4=high satisfaction). Pre-post scores on the Scleroderma Support Group Leader Self-efficacy Scale increased by 1.7 SDs (large effect); scores on burnout, emotional distress and physical function improved by 0.44, 0.38 and 0.45 SDs (moderate effects).

Conclusion: The SPIN-SSLED Programme was feasibly delivered, including management, resource and scientific aspects. Participant satisfaction was high. The programme is ready to be tested in a full-scale randomised controlled trial.

Trial registration number: NCT03508661.

Keywords: feasibility trial; patient education; peer support; scleroderma; support groups; systemic sclerosis.

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Conflict of interest statement

Competing interests: None declared.

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