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Maureen Sauve - One of the best experts on this subject based on the ideXlab platform.
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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
Trials, 2019Co-Authors: Brett D Thombs, Kylene Aguila, Laura Dyas, Claire Fedoruk, Linda Horwood, Mara Canedoayala, Maureen Sauve, Linda Kwakkenbos, Marieeve Carrier, Vanessa L. MalcarneAbstract:Background Some 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.
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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
Trials, 2019Co-Authors: Brett D Thombs, Kylene Aguila, Laura Dyas, Claire Fedoruk, Linda Horwood, Mara Canedoayala, Maureen Sauve, Marieeve Carrier, Linda KwakkenbosAbstract:Some 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. The 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. The 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. ClinicalTrials.gov, NCT03965780. Registered on 29 May 2019.
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scleroderma patient centered intervention network scleroderma support group Leader Education spin ssled program non randomised feasibility trial
BMJ Open, 2019Co-Authors: Brett D Thombs, Kylene Aguila, Laura Dyas, Vanessa L. Malcarne, Marieeve Carrier, Mia Pepin, Sami Harb, Ghassan Elbaalbaki, Sandra Pelaez, Maureen SauveAbstract: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
Brett D Thombs - One of the best experts on this subject based on the ideXlab platform.
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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
Trials, 2019Co-Authors: Brett D Thombs, Kylene Aguila, Laura Dyas, Claire Fedoruk, Linda Horwood, Mara Canedoayala, Maureen Sauve, Linda Kwakkenbos, Marieeve Carrier, Vanessa L. MalcarneAbstract:Background Some 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.
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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
Trials, 2019Co-Authors: Brett D Thombs, Kylene Aguila, Laura Dyas, Claire Fedoruk, Linda Horwood, Mara Canedoayala, Maureen Sauve, Marieeve Carrier, Linda KwakkenbosAbstract:Some 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. The 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. The 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. ClinicalTrials.gov, NCT03965780. Registered on 29 May 2019.
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scleroderma patient centered intervention network scleroderma support group Leader Education spin ssled program non randomised feasibility trial
BMJ Open, 2019Co-Authors: Brett D Thombs, Kylene Aguila, Laura Dyas, Vanessa L. Malcarne, Marieeve Carrier, Mia Pepin, Sami Harb, Ghassan Elbaalbaki, Sandra Pelaez, Maureen SauveAbstract: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
Paula Lozano - One of the best experts on this subject based on the ideXlab platform.
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a multisite randomized trial of the effects of physician Education and organizational change in chronic asthma care health outcomes of the pediatric asthma care patient outcomes research team ii study
JAMA Pediatrics, 2004Co-Authors: Paula Lozano, Jonathan A Finkelstein, Vincent J Carey, Edward W Wagner, Thomas S Inui, Anne L Fuhlbrigge, Stephen B Soumerai, Sean D Sullivan, Scott T WeissAbstract:Background Traditional primary care practice change approaches have not led to full implementation of national asthma guidelines. Objective To evaluate the effectiveness of 2 asthma care improvement strategies in primary care. Design Two-year randomized controlled clinical trial. Setting Forty-two primary care pediatric practices affiliated with 4 managed care organizations. Participants Children aged 3 to 17 years with mild to moderate persistent asthma enrolled in primary care practices affiliated with managed care organizations. Interventions Peer Leader Education consisted of training 1 physician per practice in asthma guidelines and peer teaching methods. Planned care combined the peer Leader program with nurse-mediated organizational change through planned visits with assessments, care planning, and self-management support, in collaboration with physicians. Analyses compared each intervention with usual care. Main Outcome Measures Annualized asthma symptom days, asthma-specific functional health status (Children's Health Survey for Asthma), and frequency of brief oral steroid courses (bursts). Results Six hundred thirty-eight children completed baseline evaluations, representing 64% of those screened and eligible. Mean ± SD age was 9.4 ± 3.5 years; 60% were boys. Three hundred fifty (55%) were taking controller medication. Mean ± SD annualized asthma symptom days was 107.4 ± 122 days. Children in the peer Leader arm had 6.5 fewer symptom days per year (95% confidence interval [CI], − 16.9 to 3.6), a nonsignificant difference, but had a 36% (95% CI, 11% to 54%) lower oral steroid burst rate per year compared with children receiving usual care. Children in the planned care arm had 13.3 (95% CI, − 24.7 to −2.1) fewer symptom days annually (−12% from baseline; P = .02) and a 39% (95% CI, 11% to 58%) lower oral steroid burst rate per year relative to usual care. Both interventions showed small, statistically significant effects for 2 of 5 Children's Health Survey for Asthma scales. Planned care subjects had greater controller adherence (parent report) compared with usual care subjects (rate ratio, 1.05 [95% CI, 1.00 to 1.09]). Conclusions Planned care (nurse-mediated organizational change plus peer Leader Education) is an effective model for improving asthma care in the primary care setting. Peer Leader Education on its own may also serve as a useful model for improving asthma care, although it is less comprehensive and the treatment effect less pronounced.
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cost effectiveness of physician peer Leader Education and practice based redesign in managed care the pediatric asthma care port ii trial
The Journal of Allergy and Clinical Immunology, 2004Co-Authors: Sean D Sullivan, Paula Lozano, Jonathan A Finkelstein, Vincent J Carey, Thomas S Inui, Todd A Lee, David K Blough, Ed Wagner, Anne L FuhlbriggeAbstract:Abstract Rationale A decision to implement innovative disease management interventions in health plans often requires evidence of clinical benefit and financial impact. The Pediatric Asthma Care PORT II trial evaluated the outcomes of two asthma care strategies in children (ages 3 – 17) – a peer Leader based physician behavior change intervention (PLE) and a practice-based redesign (Planned Asthma Care Intervention (PACI)). The purpose of this study is to estimate the cost-effectiveness of the interventions. Methods This was a three-arm cluster randomized trial conducted in 41 primary care practices within 3 managed care organizations. 638 children with mild to moderate persistent asthma were observed for up to two years. Practices were randomized to PLE (N=226), PACI (N=213) or usual care (N=199). The primary outcome was average symptom-free days (SFD) estimated from GEE models. Costs for the interventions, asthma-related hospitalizations, ED visits, office visits and medications were included. Non-medical costs were excluded. Results Mean annual costs per patient were: PACI=$1436, PLE=$970 and Usual Care=$388. The incremental difference in annual SFD for the interventions compared to usual care was 6.5 (95% CI −3.6 to 16.9 days) for PLE and 13.3 (95% CI 2.1 to 24.7 days) for PACI. Compared to usual care the incremental cost-effectiveness ratio (ICER) was $90 per SFD gained for PLE and $79 per SFD gained for PACI. In subgroup analyses, ICERs varied by child's age and baseline medication use. Conclusions The cost-effectiveness ratios of these interventions are greater than those of other asthma interventions tested in other settings.
Vanessa L. Malcarne - One of the best experts on this subject based on the ideXlab platform.
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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
Trials, 2019Co-Authors: Brett D Thombs, Kylene Aguila, Laura Dyas, Claire Fedoruk, Linda Horwood, Mara Canedoayala, Maureen Sauve, Linda Kwakkenbos, Marieeve Carrier, Vanessa L. MalcarneAbstract:Background Some 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.
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scleroderma patient centered intervention network scleroderma support group Leader Education spin ssled program non randomised feasibility trial
BMJ Open, 2019Co-Authors: Brett D Thombs, Kylene Aguila, Laura Dyas, Vanessa L. Malcarne, Marieeve Carrier, Mia Pepin, Sami Harb, Ghassan Elbaalbaki, Sandra Pelaez, Maureen SauveAbstract: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
Kylene Aguila - One of the best experts on this subject based on the ideXlab platform.
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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
Trials, 2019Co-Authors: Brett D Thombs, Kylene Aguila, Laura Dyas, Claire Fedoruk, Linda Horwood, Mara Canedoayala, Maureen Sauve, Linda Kwakkenbos, Marieeve Carrier, Vanessa L. MalcarneAbstract:Background Some 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.
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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
Trials, 2019Co-Authors: Brett D Thombs, Kylene Aguila, Laura Dyas, Claire Fedoruk, Linda Horwood, Mara Canedoayala, Maureen Sauve, Marieeve Carrier, Linda KwakkenbosAbstract:Some 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. The 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. The 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. ClinicalTrials.gov, NCT03965780. Registered on 29 May 2019.
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scleroderma patient centered intervention network scleroderma support group Leader Education spin ssled program non randomised feasibility trial
BMJ Open, 2019Co-Authors: Brett D Thombs, Kylene Aguila, Laura Dyas, Vanessa L. Malcarne, Marieeve Carrier, Mia Pepin, Sami Harb, Ghassan Elbaalbaki, Sandra Pelaez, Maureen SauveAbstract: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