Table 1.
Participant characteristics
| Characteristic | Patient survey (n = 1543) | Patient interviews (n = 41) | Clinician survey (n = 111) | Clinician interviews (n = 32) |
|---|---|---|---|---|
| Age | ||||
| <30 | 273 (18%) | 5 (12%) | 5 (5%) | 0 |
| 30–39 | 302 (20%) | 5 (12%) | 19 (17%) | 10 (31%) |
| 40–49 | 460 (30%) | 12 (29%) | 39 (35%) | 5 (16%) |
| 50–59 | 340 (22%) | 9 (22%) | 37 (33%) | 13 (41%) |
| 60+ | 168 (11%) | 10 (24%) | 11 (10%) | 4 (13%) |
| Gender | ||||
| Female | 1464 (95%) | 36 (88%) | 77 (69%) | 14 (44%) |
| Male | 71 (4%) | 5 (12%) | 34 (31%) | 18 (56%) |
| Other/undisclosed | 8 (1%) | 0 | 0 | 0 |
| Country/region | ||||
| England | 1196 (78%) | 25 (61%) | 87 (78%) | 25 (78%) |
| Scotland | 139 (9%) | 4 (10%) | 13 (11%) | 3 (9%) |
| Wales | 78 (5%) | 8 (20%) | 9 (8%) | 2 (6%) |
| N. Ireland | 48 (3%) | 2 (5%) | 2 (2%) | 2 (6%) |
| USA or Canada | 37 (2%) | 1 (2%) | 0 | 0 |
| Europe | 20 (1%) | 1 (2%) | 0 | 0 |
| Other | 25 (2%) | 0 | 0 | 0 |
| Disease | ||||
| Lupus | 497 (32%) | 12 (29%) | ||
| Inflammatory arthritis | 472 (31%) | 14 (34%) | ||
| Sjögren’s | 128 (8%) | 4 (10%) | ||
| Systemic sclerosis | 128 (8%) | 3 (7%) | ||
| PMR | 57 (4%) | 2 (5%) | ||
| Vasculitis | 53 (3%) | 1 (2%) | ||
| UCTD | 50 (3%) | 3 (7%) | ||
| MCTD or two or more inflammatory rheumatic diseases | 104 (7%) | 2 (5%) | ||
| Other inflammatory rheumatic disease | 53 (3%) | 0 | ||
| Time since diagnosis | ||||
| <1 year | 96 (6%) | 3 (7%) | ||
| 1–2 years | 187 (12%) | 6 (15%) | ||
| 3–5 years | 316 (21%) | 7 (17%) | ||
| 6–9 years | 293 (19%) | 11 (27%) | ||
| 10+ years | 645 (42%) | 13 (32%) | ||
| Unsure or missing | 6 (<1%) | 1 (2%) | ||
| Clinician role | ||||
| Rheumatology consultant | 72 (65%) | 15 (47%) | ||
| Rheumatologist registrar | 13 (12%) | 5 (16%) | ||
| Rheumatology nurse | 19 (17%) | 6 (19%) | ||
| GP | 0 (not surveyed) | 5 (16%) | ||
| Other speciality | 7 (6%) | 1 (3%) |