Table 1 Validation study: Participant characteristics (n = 78)
Characteristic | n (%) |
|---|---|
Instrument format | |
Online survey | 25 (32.1%) |
Paper survey | 53 (67.9%) |
Sex | |
Female | 59 (75.6%) |
Male | 17 (21.8%) |
Not reported | 2 (2.6%) |
Age [years, median (IQR)] | 61 (49–71) |
Disease duration, self-reported [years, median (IQR)] | 8 (4–13) |
Not reported | 5 |
Disease subset, self-reported | |
Limited cutaneous systemic sclerosis (lSSc) | 28 (35.9%) |
Diffuse cutaneous systemic sclerosis (dSSc) | 22 (28.2%) |
Overlap syndrome1 | 3 (3.9%) |
Don’t’ know | 20 (25.6%) |
Not reported | 5 (6.4%) |
Comorbidities, self-reported | |
Gastrointestinal problems | 46 (58.2%) |
Osteoarthritis | 32 (40.5%) |
Backpain | 31 (39.2%) |
Lung problems | 28 (35.4%) |
High blood pressure | 24 (30.4%) |
Heart problems | 22 (27.8%) |
Depression | 12 (15.2%) |
Anemia or other blood problems | 10 (12.7%) |
Liver problems | 9 (11.4%) |
Diabetes | 5 (6.3%) |
Kidney problems | 3 (3.8%) |
Marital status | |
Single | 11 (14.1%) |
Married/cohabiting | 52 (66.7%) |
Divorced, separated, or widowed | 13 (16.7%) |
Not reported | 2 (2.5%) |
Education | |
Tertiary level (e.g. university of applied science) | 32 (41.1%) |
Upper secondary (e.g. Baccalaureate schools) | 34 (43.5%) |
Compulsory (e.g. high school) | 10 (12.8%) |
No completed school education or vocational training | 1 (1.3%) |
Not reported | 1 (1.3%) |
Employment2 | |
Employed | 38 (48.7%) |
Working full time (80–100% employed) | 17/38 (21.8%) |
Working part time (less than 80% employed) | 21/38 (26.9%) |
Looking for work | 4 (5.1%) |
In training (student, vocational education) | 7 (9.0%) |
Retired | 19 (24.4%) |
On disability or sick leave | 10 (12.8%) |
Not reported | 1 (1.3%) |