Table 1.
Demographic characteristics (n=1060)
| Variable | Value |
| Demographic | |
| Age in years, mean (SD) | 54.6 (12.2) |
| Female sex, n (%) | 932 (88) |
| Education in years, mean (SD) | 15.0 (3.6) |
| Married or living as married, n (%) | 751 (71) |
| Country, n (%) | |
| Canada | 273 (26) |
| USA | 416 (39) |
| UK | 117 (11) |
| France | 218 (21) |
| Spain | 32 (3) |
| Mexico | 4 (0) |
| Disease characteristics | |
| Time since onset first non-Raynaud’s symptom or sign in years, mean (SD) | 11.3 (8.5) |
| Time since onset Raynaud’s in years, mean (SD)* | 14.6 (11.6) |
| Time since diagnosis in years, mean (SD)† | 9.4 (7.8) |
| Diffuse disease subtype, n (%) | 439 (41.4) |
| Modified Rodnan Skin Score, mean (SD)‡ | 8.1 (8.6) |
| Signalling question scores | |
| Fatigue, mean (SD) | 6.8 (3.2) |
| Hand function and mobility, mean (SD) | 6.8 (3.4) |
| Sleep problems, mean (SD) | 6.0 (3.7) |
| Emotions and stress, mean (SD) | 5.8 (3.6) |
| Body image and appearance, mean (SD) | 5.1 (3.7) |
| Pain, mean (SD) | 6.3 (3.4) |
| Self-management/coping strategies, mean (SD) | 6.6 (3.3) |
| Nutrition/diet, mean (SD) | 6.9 (3.2) |
| Exercise, mean (SD) | 7.0 (2.9) |
| Patient-reported outcome measures | |
| Self-efficacy to Manage Chronic Disease Scale, mean (SD) | 6.3 (2.2) |
| PROMIS-29 fatigue, mean (SD) | 55.9 (10.7) |
| PROMIS-29 sleep, mean (SD) | 52.8 (8.6) |
| PROMIS-29 depression, mean (SD) | 51.7 (9.3) |
| PROMIS-29 pain, mean (SD) | 56.4 (9.3) |
| Cochin Hand Function Scale, mean (SD) | 14.7 (16.4) |
| Social Appearance Anxiety Scale, mean (SD) | 29.6 (13.7) |
| Interference from gastrointestinal problems, mean (SD) | 2.7 (3.0) |
| Physical activity, mean (SD) | 1.7 (1.1) |
*Due to missing data: N=986.
†Due to missing data: N=1053.
‡Due to missing data: N=879.
PROMIS-29, Patient-Reported Outcomes Measurement Information System-29.