Abstract
Introduction/Objective:
The Scleroderma Patient-centered Intervention Network Support group Leader EDucation Program was found in a randomized controlled trial to substantially improve leader self-efficacy. Whether the program is effective for leaders with different levels of experience, including candidate leaders with no prior experience and leaders with ⩽3 years experience or ⩾4 years experience, is not known. The objective of the present post hoc secondary analysis was to evaluate outcomes by leader experience, age, and education.
Methods:
The trial was a pragmatic, two-arm partially nested randomized controlled trial with 1:1 allocation to intervention or waitlist control. Eligible participants were existing or candidate support group leaders. The 13-session leader training was delivered in groups of five to six participants weekly via videoconference in 60- to 90-min sessions. The primary outcome was leader self-efficacy, measured by the Support Group Leader Self-efficacy Scale (SGLSS) immediately post-intervention. Secondary outcomes were Support Group Leader Self-efficacy Scale scores 3 months post-intervention and emotional distress, leader burnout, and volunteer satisfaction post-intervention and 3 months post-intervention. Leaders were classified as having no experience, ⩽3 years experience, or ⩾4 years experience.
Results:
A total of 148 participants were randomized to intervention (N = 74) or waitlist (N = 74). Compared to leaders with ⩾4 years of experience, Support Group Leader Self-efficacy Scale scores were non-statistically significantly higher post-intervention for leaders with 0–3 years experience and lower for leaders with no experience. The 3 months post-intervention Support Group Leader Self-efficacy Scale scores were significantly lower for leaders without experience and similar for leaders with 0–3 years to those with ⩾4 years experience. There were no differences by experience on other outcomes or by age and education on any outcomes.
Conclusion:
Support group leader education improved leader self-efficacy but was most effective for leaders with experience prior to initiating the program.
Trial Registration:
NCT03965780; registered on May 29, 2019.
Keywords: Patient education, peer support, randomized controlled trial, support groups, systemic sclerosis
Introduction
Many people with systemic sclerosis (SSc) participate in peer-led support groups to obtain education about their disease and its management, to learn coping skills, and for social support.1 –3 There are substantial challenges, however, in initiating and sustaining peer-led support groups, including practical difficulties, such as limited resources and access to knowledgeable professionals; difficulty with group leadership tasks, including managing complex group dynamics; and personal challenges, including living with a burdensome condition while supporting others.3 –5 Many health professionals are reluctant to recommend support groups, and some patients may not participate due to concerns that some groups may be poorly organized, overly negative, or disseminate inaccurate information.6 –15
To address challenges in conducting support groups, we developed the Scleroderma Patient-centered Intervention Network Support group Leader EDucation (SPIN-SSLED) Program. The program is a 13-module weekly videoconference-based training program designed to increase the ability of SSc peer support group leaders to effectively carry out leadership tasks.16 –18 We conducted a randomized controlled trial (RCT) of the SPIN-SSLED Program, 16 in which 148 existing or candidate leaders of SSc peer support groups were allocated to receive the SPIN-SSLED Program (N = 74) or waitlist (N = 74). The primary outcome, leader self-efficacy, measured by the Support Group Leader Self-Efficacy Scale (SGLSS), 19 was substantially higher at the end of the program among intervention arm participants compared to waitlist control (standardized mean difference (SMD) = 0.84, 95% confidence interval (CI) = 0.58 to 1.09), and this was retained 3 months later (SMD = 0.73, 95% CI = 0.49 to 0.98).
Since the end of the trial, SPIN has continued to partner with SSc patient organizations to provide the program to support group leaders. To develop training program policies, our partners asked us to evaluate whether program benefits are associated with leader experience. Thus, we conducted post hoc secondary analyses of the SPIN-SSLED Trial 16 to examine effects by leader experience (no experience; ⩽3 years; ⩾4 years) on our primary outcome, support group leadership self-efficacy immediately post-intervention and on secondary outcomes, including SGLSS scores 3 months post-intervention, as well as emotional distress, burnout, and leader volunteer satisfaction post-intervention and 3 months later. In addition to leader experience, we evaluated whether participant age and years of education were associated with trial outcomes.
Methods
The SPIN-SSLED Trial 16 was a pragmatic, two-arm parallel partially nested RCT 20 with 1:1 allocation to intervention or waitlist control. The Research Ethics Committee of the Centre intégré universitaire de santé et de services sociaux du Centre-Ouest-de-l’Île-de-Montréal (#2020-1780) approved the trial. Full methods are described in the protocol 18 and main trial report. 16
Trial eligibility
Eligible trial participants were existing support group leaders or candidate support group leaders who a partner patient organization confirmed would start a support group following training. For existing support groups with more than one leader, only one leader could enroll.
Recruitment and enrollment
Patient organization partners contacted current and candidate leaders and provided SPIN with a list of interested leaders. We additionally advertised the trial through social media and created a study webpage. 21 We emailed interested potential participants a Qualtrics survey link where they could provide informed consent electronically or request to be contacted. Consented participants provided sociodemographic data, information on support group leader experience, language preference (English or French), and scheduling information.
Randomization and masking
Training groups were conducted in 3-month waves across the trial period. In each wave, enrolled participants were entered into pools based on language and scheduling availability and were randomized externally by the Griffith Randomization Service (Queensland, Australia; https://randomization.griffith.edu.au/) into intervention or control via block randomization. Blocks were stratified by current and candidate leaders with no more than two candidate leaders per intervention group. Participants were emailed their intervention or waitlist assignment, and intervention participants also received scheduling and program information.
Participants and research staff were not blinded to intervention status.
Intervention and comparator
Groups of five to six participants met weekly for 13 weeks in 60- to 90-min sessions via the GoToMeeting® videoconferencing platform. Participants received an SPIN-SSLED Program Manual, and instructors facilitated sessions using the SPIN-SSLED Instructor Manual, which includes guidance on introducing an instructor manual (see Supplementary Material 1). English-language training groups were facilitated by a master’s level clinical social worker with 28 years of experience and over 10 years training SSc support group leaders. The French-language group was facilitated by an SPIN-SSLED Program graduate with an education background and over 5 years of experience leading a support group; she was trained by the English-language group trainer.
The program includes 12 general leader education modules plus one module on SSc. Module topics include (1) the Leader’s Role; (2) Starting a Support Group; (3) Structuring a Support Group Meeting; (4) Scleroderma 101; (5) Successful Support Group Culture; (6) Managing Support Group Dynamics; (7) Loss and Grief: The Support Group Leader; (8) Loss and Grief: Supporting Group Members; (9) Advertising and Recruitment for the Support Group; (10) Continuity of the Group; (11) Supporting Yourself as a Leader; (12) Remote Support Groups; and (13) Transitions in Support Groups (see Supplemental Material 2 for more detail).
In addition to the videoconference training sessions, participants had access to a secure, monitored online forum to interact with other program participants about program content and to a resource center with video presentations by SSc expert physicians and other educational material for use in their support groups.
Waitlist
Waitlist participants were informed that they would be offered access to the SPIN-SSLED Program following their 3-month post-intervention assessment and only received reminders to complete assessments.
Trial outcomes
Emails to complete outcome measure were sent to intervention and waitlist participants on the date of each intervention group’s last session and 3 months later. All measures were available in English and French or translated into French by SPIN researchers using forward-backward translation methods. 22 Detailed information on outcomes is available in Supplementary Material 3.
The primary outcome analysis compared SGLSS 19 scores between intervention and waitlist immediately post-intervention. The SGLSS is a 32-item scale designed to assess support group leader confidence to successfully perform leader tasks (e.g. organizational skills), manage group and interpersonal interactions, and balance group leadership and self-care needs. Items reflect core SPIN-SSLED Program content. The SGLSS utilizes a 6-point Likert-type scale ranging from 1 (strongly disagree) to 6 (strongly agree), with higher total scores (possible range = 32–192) indicating greater self-efficacy.
Secondary outcomes included the SGLSS 3 months post-intervention and other outcome measures immediately post-intervention and 3 months post-intervention, including emotional distress (Patient Health Questionnaire-8; PHQ-8) 23 among all participants, and leader burnout (Oldenburg Burnout Inventory; OLBI) 24 and satisfaction (Participation Efficacy subscale of the Volunteer Satisfaction Index; VSI) 25 among existing support group leaders.
Data analysis
The full statistical analysis plan can be found in Supplementary Material 4. As in the main trial analyses, outcome analyses in the present report were conducted in R (R version 4.2.2; R Studio version 2022.07.2). We used intent-to-treat analyses to estimate score differences between intervention and waitlist participants with a linear mixed-effects model fit using the lmer function in lme4. 26
Evaluation of effects by leader experience, age, and years of education was done via interaction models and stratified analyses. For the interaction analyses, we also fit linear mixed-effects models to estimate the additional difference in score differences between intervention and waitlist participants for having no leader experience and ⩽3 years of leader experience versus ⩾4 years of leader experience (reference category), for a 1-year increase in age, and for a 1-year increase in years of education. For the SGLSS outcome, since there was a statistically significant interaction, we additionally fit stratified linear mixed-effects models for score differences between intervention and waitlist in subgroups of participants with no leadership experience, ⩽3 years of experience, and ⩾4 years of experience, separately.
For all models, differences were presented with 95% CIs. To account for clustering in the blocked partially nested randomized controlled trial design, we fit a random intercept and slope for treatment effect by randomization block and an additional random slope for treatment by intervention group cluster. There were several exceptions to facilitate model convergence, in which we simplified the model to facilitate convergence and included random intercepts but not random slopes (see Supplementary Material 4). For all models, we included a fixed effect for assignment to the intervention arm and a fixed effect for baseline score. Interaction models included additional fixed effects for the moderator variable as well as the interaction between the moderator variable and assignment to the intervention arm.
To minimize the possibility of bias from missing outcome data, we used multiple imputations by chained equations using the mice package to generate 20 imputed data sets, using 15 cycles per imputed data set. Variables included in the mice procedure are described in Supplementary Material 3. Pooled standard errors and associated 95% CIs were estimated using Rubin’s rules. 27
All analyses were two-sided with α = 0.05. We did not adjust for multiple analyses.
Involvement of people with lived experience
The SPIN Support Group Advisory Team was involved in all SPIN research on SSc support groups, including preliminary research; the development of the SPIN-SSLED program; and the design, implementation, and reporting of the feasibility 17 and full-scale trials. 16
Results
Participants
Of the 198 potential participants assessed for eligibility, 29 were not eligible because they were a co-leader of a group from which an eligible leader was included. In addition, 11 did not confirm availability for scheduling, and 10 could not be matched on language or day and time availability. Thus, 148 participants were randomized to intervention (N = 74) or waitlist control (N = 74) (see Figure 1). The first training groups were held from September to December 2019 (three groups), and sessions were also held from January to March 2020 (four groups), April to June 2020 (two groups), July to September 2020 (three groups), and January to March 2021 (one group).
Figure 1.
SPIN-SSLED trial flow diagram.
As shown in Table 1, intervention and waitlist participants were similar. In the intervention arm, of 70 participants with data on leadership experience, there were 17 (24%) candidate leaders with no experience, 31 (44%) leaders with ⩽3 years of experience, and 22 (31%) leaders with ⩾4 years of experience. In the waitlist arm, of the 73 participants with data, there were 17 (23%) with no experience, 25 (34%) with ⩽3 years of experience, and 31 (42%) with ⩾4 years of experience.
Table 1.
Participant characteristics.
| Variable | SPIN-SSLED intervention N = 74 |
Waitlist control N = 74 |
|---|---|---|
| Demographics | ||
| Female sex, N (%) | 68 (92%) | 66 (89%) |
| Age in years, mean (SD) | 53.5 (12.0) | 57.3 (11.7) |
| Education in years, mean (SD) | 15.8 (2.6) | 16.0 (3.1) |
| Live in a city or town (versus suburb or rural), N (%) | 43 (58%) | 40 (54%) |
| Married or living as married (vs. single), N (%) | 49 (66%) | 51 (69%) |
| Work full-time or part-time, N (%) | 30 (41%) | 25 (34%) |
| Country, N (%) | ||
| The United States | 43 (58%) | 48 (65%) |
| Canada | 13 (18%) | 9 (12%) |
| Australia | 5 (7%) | 7 (9%) |
| New Zealand | 4 (5%) | 4 (5%) |
| The United Kingdom | 5 (7%) | 1 (1%) |
| Other a | 4 (5%) | 5 (7%) |
| Language of instruction, N (%) b | ||
| English | 69 (93%) | 69 (93%) |
| French | 5 (7%) | 5 (7%) |
| Race/ethnicity, N (%)c,d | ||
| White | 58 (79%) | 63 (86%) |
| Black | 4 (5%) | 3 (4%) |
| Hispanic/Latino | 5 (7%) | 1 (1%) |
| Other e | 6 (8%) | 6 (8%) |
| Disease characteristics | ||
| Diagnosed with SSc, N (%) | 63 (85%) | 67 (91%) |
| Diffuse disease subtype among participants diagnosed with SSc, N (%) | 30 (48%) | 26 (39%) |
| Years since SSc diagnosis among participants with SSc, mean (SD) f | 12.4 (8.4) | 13.5 (7.7) |
| Support group leader experience g | ||
| Candidate leader with no experience, n (%) | 17 (24%) | 17 (23%) |
| Leader with ⩽3 years of experience, n (%) | 31 (44%) | 25 (34%) |
| Leader with ⩾4 years of experience, n (%) | 22 (31%) | 31 (42%) |
| Years as an SSc support group leader among experienced leaders, mean (SD) h | 4.6 (5.7) i | 5.8 (5.6) j |
| Patient-reported outcomes at baseline | ||
| Scleroderma Support Group Leader Self-Efficacy Scale, mean (SD) | 149.8 (23.0) | 149.3 (20.9) k |
| Patient Health Questionnaire-8, mean (SD) | 3.7 (3.3) | 4.0 (3.9) k |
| Oldenburg Burnout Inventory, among experienced leaders, mean (SD) | 38.6 (3.3) | 38.6 (3.4) l |
| Volunteer Satisfaction Index, among experienced leaders, mean (SD) m | 36.4 (7.2) | 34.8 (8.1) l |
N: number of participants; SD: standard deviation; SSc: systemic sclerosis.
Philippines, N = 4; France, N = 3; Germany, N = 1; India, N = 1.
Based on expressed preference and intervention or waitlist assignment.
N respondents = 73 for intervention and waitlist arms.
Participants who provided more than one race/ethnicity were classified as other.
American Indian or Alaskan Native, N = 2; Asian, N = 4; Indo-Aryan, N = 1; Maori, N = 1; Mixed, N = 1; White and Aboriginal, N = 1; White and American Indian or Alaskan Native, N = 1; White and Asian, N = 1.
Maximum years a participant could enter was “25 or more,” which was counted as 25 years (N = 12 in intervention arm and 9 in waitlist arm).
N = 70 for intervention arm and 73 for waitlist arm.
Maximum years a participant could enter was “25 or more,” which was counted as 25 (N = 2 in intervention arm and 0 in waitlist arm).
N = 53 due to missing data for four participants.
N = 56 due to missing data for one participant.
N = 72 due to missing data for one participant.
N = 55 due to missing data for two participants.
For 16 participants in the intervention arm and 18 participants in the waitlist control arm, item 5 (of seven items) was not administered due to a technical error; for those participants, total scores were calculated by multiplying total scores on six items administered by 7/6.
Among intervention participants with no prior leader experience, 3 of 17 began leading a support group by the end of the 13-week training program, and an additional 3 began in the 3 months post-training. Among waitlist participants with no prior experience, 4 of 17 indicated they had begun to lead a group by the end of the intervention period, and no additional participants began leading a group in the subsequent 3 months. Among the 74 participants in the intervention arm, mean (standard deviation) sessions attended were 11.4 (2.9) for the 17 participants with no experience, 11.0 (3.2) for the 31 participants with ⩽3 years of experience, and 12.1 (1.0) for the 22 participants with ⩾4 years of experience.
Trial outcomes
Outcome data were obtained for 146 of 148 (99%) participants immediately post-intervention, including 74 of 74 (100%) intervention participants and 72 of 74 (97%) waitlist participants. At 3 months post-intervention, 147 (99%) provided follow-up data, including 74 (100%) intervention participants and 73 (99%) waitlist participants.
As shown in Table 2, post-intervention, SGLSS scores compared to waitlist control were somewhat lower (−4.42 points, 95% CI = −16.83 to 7.98) for participants with no experience and somewhat higher (9.67 points, 95% CI = −1.07 to 20.41) for participants with up to 3 years of experience compared to participants with 4 or more years of experience, although these differences were not statistically significant. At 3 months post-intervention, SGLSS scores compared to waitlist control were statistically significantly and substantially lower (−15.50 points, 95% CI = −28.46 to −2.54) for participants with no experience compared to participants with 4 or more years of experience. SGLSS score differences for participants with up to 3 years of experience were slightly higher (3.97 points, 95% CI = −7.47 to 15.42) than for participants with 4 or more years of experience. There were not statistically significant or substantive differences by experience for other outcomes or by age or education for any outcome variables.
Table 2.
Trial outcomes and interactions of age, education, and leader experience with outcomes.
| Leader self-efficacy (SGLSS) score a | Emotional distress (PHQ-8) score | Burnout (OLBI) score (among experienced leaders) | Volunteer satisfaction (VSI) score (among experienced leaders) | |
|---|---|---|---|---|
| Difference (95% CI) |
Difference (95% CI) |
Difference (95% CI) |
Difference (95% CI) |
|
| Post-intervention | ||||
| Primary model b | ||||
| Difference in leader self-efficacy score for intervention arm versus waitlist arm in raw scale scores | 16.68 (11.04 to 22.32) c | −0.93 (−1.84 to −0.03) | −0.53 (−1.66 to 0.59) | 5.08 (3.25 to 6.91) |
| Difference in leader self-efficacy score for intervention arm versus waitlist arm in standardized mean difference (SMD) units | 0.84 (0.58 to 1.09) | −0.26 (−0.50 to −0.02) | −0.13 (−0.38 to 0.11) | 0.70 (0.46 to 0.94) |
| Interactions d | ||||
| Leader Experience | ||||
| Additional difference for intervention arm versus waitlist arm for participants with no experience versus participants with ⩾4 years of experience | −4.42 (−16.83 to 7.98) | 1.68 (−0.61 to 3.97) | – | – |
| Additional difference for intervention arm versus waitlist arm for participants with ⩽3 years of experience versus participants with ⩾4 years of experience | 9.67 (−1.07 to 20.41) | −1.84 (−3.80 to 0.13) | 0.06 (−2.25 to 2.37) | 2.34 (−1.53 to 6.20) |
| Age | ||||
| Additional difference for intervention arm versus waitlist arm per 1-year increase in age | −1.55 (−6.45 to 3.34) c | 0.29 (−0.58 to 1.16) | 0.96 (−0.18 to 2.10) | −0.62 (−2.49 to 1.25) |
| Education | ||||
| Additional difference for intervention arm versus waitlist arm per 1-year increase in years of education | 0.69 (−4.22 to 5.60) c | −0.07 (−0.96 to 0.81) | −0.57 (−1.76 to 0.61) | 0.23 (−1.67 to 2.14) |
| 3 Months post-intervention d | ||||
| Primary model b | ||||
| Difference in leader self-efficacy score for intervention arm versus waitlist arm | 15.60 (10.22 to 20.99) | −0.81 (−1.86 to 0.25) | −0.90 (−1.95 to 0.14) | 3.91 (2.10 to 5.72) |
| Interactions d | ||||
| Leader experience | ||||
| Additional difference for intervention arm versus waitlist arm for participants with no experience versus participants with ⩾4 years of experience | −15.50 (−28.46 to −2.54) | 1.04 (−1.37 to 3.46) | – | – |
| Additional difference for intervention arm versus waitlist arm for participants with ⩽3 years of experience versus participants with ⩾4 years of experience | 3.97 (−7.47 to 15.42) | 1.01 (−1.10 to 3.13) | 0.50 (−1.58 to 2.58) | −0.59 (−4.13 to 2.95) |
| Age | ||||
| Additional difference for intervention arm versus waitlist arm per 1-year increase in age | −1.57 (−6.59 to 3.45) | 0.24 (−0.66 to 1.15) | 0.46 (−0.60 to 1.53) | −0.94 (−2.69 to 0.81) |
| Education | ||||
| Additional difference for intervention arm versus waitlist arm per 1-year increase in years of education | 1.19 (−3.85 to 6.24) | −0.89 (−1.81 to 0.02) | −0.38 (−1.48 to 0.73) | 0.91 (−0.94 to 2.77) |
CI: confidence interval; PHQ-8: Patient Health Questionnaire-8; OLBI: Oldenburg Burnout Inventory; SGLSS: Support Group Leader Self-efficacy Scale; VSI: Volunteer Satisfaction Index. All models are presented with multiply imputed data. Positive numbers favor the intervention for the SGLSS and VSI; negative numbers favor the intervention for the PHQ-8 and OLBI.
One intervention arm participant scored 118 on the SGLSS (possible scores 32 to 192) at baseline, 187 post-intervention, and 32 (all items “strongly disagree”) at 3 months post-intervention. We inquired with the participant about the unusual variability in scores, and she indicated that she had intended to score all items as “strongly agree” at 3 months post-intervention (score = 192) but had mistakenly responded backwards. Thus, her score was counted as missing at 3 months post-intervention.
Models estimate effect of trial arm assignment on participant scores, adjusted for baseline scores.
To facilitate convergence, models were simplified to remove random slopes and to only include a single random intercept for each separate intervention group and for all waitlist participants combined.
Models estimate interaction of trial arm assignment and moderator variable on participant scores, adjusted for baseline scores.
Table 3 compares intervention and waitlist arm participants on SGLSS scores post-intervention and 3 months post-intervention stratified by leader experience levels. Gains in SGLSS scores were the greatest at both time points for leaders with 0–3 years of experience leading groups and were also large and statistically significant for leaders with 4 years or more of experience. Gains from the intervention were smaller and not statistically significant post-intervention and returned to almost no difference at 3 months post-intervention for leaders with no experience.
Table 3.
Difference in leader self-efficacy for intervention arm versus waitlist arm stratified by leader experience.
| Leader self-efficacy (SGLSS) score Post-intervention |
Leader self-efficacy (SGLSS) score 3 Months post-intervention |
|
|---|---|---|
| Difference (95% CI) |
Difference (95% CI) |
|
| Full sample a | 16.68 (11.04 to 22.32) b | 15.60 (10.22 to 20.99) |
| Candidate leaders with no experience | 8.16 (−4.58 to 20.90) | 1.81 (−7.75 to 11.36) |
| Leaders with ⩽3 years of experience | 24.54 (16.76 to 32.32) b | 21.51 (13.00 to 30.03) |
| Leaders with ⩾4 years of experience | 11.90 (3.03 to 20.77) | 17.51 (8.85 to 26.16) b |
CI: confidence interval; SGLSS: Support Group Leader Self-efficacy Scale. All models are presented with multiply imputed data. Positive numbers favor the intervention.
Models estimate effect of trial arm assignment on participant scores, adjusted for baseline scores.
To facilitate convergence, models were simplified to remove random slopes and to only include a single random intercept for each separate intervention group and for all waitlist participants combined.
Discussion
The SPIN-SSLED Trial found that a program developed in collaboration with SSc peer support group leaders and members of patient organization leadership teams increased peer-leader self-efficacy, including confidence to perform organizational tasks, manage group and interpersonal interactions, and balance group leadership and self-care needs. The present secondary analyses found that gains from the program appear to be associated with leader experience but not age or education level. Although the trial was not powered for subgroup analyses, results suggest that the most robust gains from the program were among participants with relatively low levels of experience (0–3 years) and that gains were also substantial among more experienced leaders (4 years or more). The smallest gains immediately post-intervention were among trial participants without experience leading groups, and these small gains dissipated in the 3 months following the end of the intervention.
Trial participants were existing support group leaders affiliated with an SPIN patient organization partner or candidate support group leaders who an organization indicated would initiate a group post-training. However, only 7 of the 34 (21%) participants without leadership experience in the intervention or waitlist arms of the trial had begun to lead a group by the end of the training, and this increased to only 10 of the 34 (29%) participants 3 months post-intervention. One reason for this may have been the COVID-19 pandemic. Prior to the pandemic, most support groups were offered in-person. Many transitioned to virtual meetings during the pandemic, but based on reports from patient organization partners, few new groups were initiated, which is consistent with what we found in our trial.
SPIN’s patient organization partners who have continued to offer access to the SPIN-SSLED Program post-trial wanted to know if experienced leaders benefit from the program and should be required to participate or if this should be a requirement for only leaders with less or no experience. Our results underline that peer group leaders with even 4 or more years of experience had substantial gains from participating in the SPIN-SSLED Program. On the contrary, candidate leaders without pre-training experience gained relatively little, and any gains they reported at the end of the training appear to have disappeared by 3 months post-training. One reason for this may be that a critical component of the training program involves sharing and discussing experiences in support group leadership. Another reason may be that participants who are currently leading groups are able to apply what they are learning in their groups, which likely further supports their learning and skill development. Since most of the candidate leaders did not initiate groups during or after the training period, they would not have been able to share experiences and receive feedback in the training sessions and would not have had the opportunity to apply their learning. Our findings suggest that patient organizations that sponsor peer support groups may wish to encourage or require training for all leaders. However, it may be important that new leaders do not join the training program until they have initiated or are ready to initiate a designated support group.
Since all trial participants assigned to the waitlist are offered the SPIN-SSLED training at the end of the trial, it is not possible to assess long-term effectiveness of the training. Following the core training, SPIN, in partnership with patient organizations, provides monthly refresher seminars to program graduates so that they can continue to develop their skills and knowledge and to support each other in their leadership roles.
Strengths and limitations of the SPIN-SSLED Trial have been described previously. 16 Briefly, strengths included the extensive background research and partnership with patients and patient organizations to develop the program, that the primary outcome measure was developed and validated to assess the program’s training objectives, the successful recruitment of participants and collection of follow-up data from 99% of participants post-intervention and 3 months later, and that the program can be provided via videoconference at a low cost and easily adapted for people with different medical conditions. Limitations included the self-report outcomes and that most trial participants were White, English-speaking, middle-aged, and women, which may limit generalizability.
Peer-led support groups are used by people with rare diseases around the world for emotional and practical support and education to strengthen coping skills. They are organized and delivered, in most cases, without collaboration from health care professionals. The SPIN-SSLED Trial is the first well-conducted, adequately powered trial in any disease to test whether a support group leader education and training program can improve support group leader self-efficacy for group leadership. The program led to substantially higher leader self-efficacy, and this was retained 3 months post-intervention. It also improved satisfaction of leaders with their volunteer contributions and may reduce emotional distress. The program is feasibly delivered via Internet videoconference. Peer support group leader training may increase the likelihood that groups provide intended benefits and reduce the potential for harm through misinformation via modules that address finding credible information and the importance of sharing experience but not medical information or advice. Results from the SPIN-SSLED Trial should be replicated in other conditions and, if successful, the program can be adapted and disseminated to patient organizations that support people with other rare diseases. Ideally, program participants will have experience leading a support group or initiate leadership prior to starting training.
Supplemental Material
Supplemental material, sj-pdf-1-jso-10.1177_23971983241272742 for Association of support group leader experience with Scleroderma Patient-centered Intervention Network Support group Leader EDucation Program outcomes: Secondary analysis of a two-arm parallel partially nested randomized controlled trial by Brett D Thombs, Brooke Levis, Marie-Eve Carrier, Laura Dyas, Violet Konrad, Maureen Sauvé and Andrea Benedetti in Journal of Scleroderma and Related Disorders
Footnotes
Authors’ note: An Editorial Board member of JSRD is an author of this paper; therefore, the peer review process was managed by alternative members of the Board and the submitting Editor/Board member had no involvement in the decision-making process.
The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: All authors have completed the ICJME uniform disclosure form and declare no support from any organization for the submitted work and no financial relationships with any organizations that might have an interest in the submitted work in the previous 3 years. All authors declare no other relationships or activities that could appear to have influenced the submitted work.
Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The SPIN-SSLED Trial was funded by the Canadian Institutes of Health Research (PJT-156429; PJT-162126) and the Scleroderma Society of Ontario. B.D.T. was supported by a Tier 1 Canada Research Chair, outside of the present work. No funder had any role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
ORCID iD: Brett D Thombs 
https://orcid.org/0000-0002-5644-8432
Supplemental material: Supplemental material for this article is available online.
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Associated Data
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Supplementary Materials
Supplemental material, sj-pdf-1-jso-10.1177_23971983241272742 for Association of support group leader experience with Scleroderma Patient-centered Intervention Network Support group Leader EDucation Program outcomes: Secondary analysis of a two-arm parallel partially nested randomized controlled trial by Brett D Thombs, Brooke Levis, Marie-Eve Carrier, Laura Dyas, Violet Konrad, Maureen Sauvé and Andrea Benedetti in Journal of Scleroderma and Related Disorders