Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial

Thombs, Brett D.; Levis, Brooke; Carrier, Marie-Eve; Dyas, Laura; Nordlund, Julia; Tao, Lydia; Aguila, Kylene; Bourgeault, Angelica; Konrad, Violet; Sauvé, Maureen; Connolly, Kerri; Henry, Richard S.; Østbø, Nora; Levis, Alexander W.; Kwakkenbos, Linda; Malcarne, Vanessa L.; El-Baalbaki, Ghassan; Hudson, Marie; Wurz, Amanda; Culos-Reed, S. Nicole; Platt, Robert W.; Benedetti, Andrea

doi:10.1186/s13023-022-02552-x

Table 2 Participant characteristics

From: Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial

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%)
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
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

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