Table 2.
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 (versus single), N (%) | 49 (66%) | 51 (69%) |
| Work full-time or part-time, N (%) | 30 (41%) | 25 (34%) |
| Country, N (%) | ||
| United States | 43 (58%) | 48 (65%) |
| Canada | 13 (18%) | 9 (12%) |
| Australia | 5 (7%) | 7 (9%) |
| New Zealand | 4 (5%) | 4 (5%) |
| United Kingdom | 5 (7%) | 1 (1%) |
| Othera | 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%) |
| Othere | 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 | ||
| Experienced leader of SSc support group, n (%) | 57 (77%) | 57 (77%) |
| Years as a SSc support group leader among experienced leaders, mean (SD)g | 4.6 (5.7)h | 5.8 (5.6)i |
| Works with a co-leader among experienced leaders, n (%) | 26 (49%)h | 26 (46%)i |
| Former regular member of their support group among experienced leaders, n (%) | 26 (49%)h | 32 (57%)i |
| Patient-reported outcomes at baseline | ||
| Scleroderma Support Group Leader Self-Efficacy Scale, mean (SD) | 149.8 (23.0) | 149.3 (20.9)j |
| Patient Health Questionnaire-8, mean (SD) | 3.7 (3.3) | 4.0 (3.9)j |
| Oldenburg Burnout Inventory, among experienced leaders, mean (SD) | 38.6 (3.3) | 38.6 (3.4)k |
| Volunteer Satisfaction Index, among experienced leaders, mean (SD)l | 36.4 (7.2) | 34.8 (8.1)k |
N number of participants, SD standard deviation, SSc systemic sclerosis
aPhilippines, N = 4; France, N = 3; Germany, N = 1; India, N = 1
bBased on expressed preference and intervention or waitlist assignment
cN respondents = 73 for intervention and waitlist arms
dParticipants who provided more than one race/ethnicity were classified as other
eAmerican 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
fMaximum 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)
gMaximum years a participant could enter was “25 or more”, which was counted as 25 (N = 2 in intervention arm and 0 in waitlist arm)
hN = 53 due to missing data for 4 participants
iN = 56 due to missing data for one participant
jN = 72 due to missing data for one participant
kN = 55 due to missing data for 2 participants
lFor 16 participants in the intervention arm and 18 participants in the waitlist control arm, item 5 (of 7 items) was not administered due to a technical error; for those participants, total scores were calculated by multiplying total scores on 6 items administered by 7/6