Participant characteristics (quantitative survey and qualitative focus groups)
| Patients | Quantitative (n=101) | Qualitative (n=4) | |
| Sex (n (%)) | Female | 77 (76.2) | 4 (100) |
| Not reported | 4 (4) | – | |
| Age (years) (median (IQR)) | 60 (50–68) | – | |
| Country of healthcare provision (n (%)) | Switzerland | 101 (100) | 3 (75) |
| UK | 1 (25) | ||
| Disease subset, self-reported (n (%)) | lcSSc | 31 (30.7) | 2 (50) |
| dcSSc | 36 (35.6) | 2 (50) | |
| Other rare rheumatic disease | 3 (3.0) | – | |
| Don’t know | 25 (24.8) | – | |
| Disease duration (years) (median (IQR)) | 8 (5–15) | 32 (17–40) | |
| Questionnaire (n (%)) | Online survey | 43 (42.6) | – |
| Paper survey | 58 (57.4) | – | |
| Country of origin (n (%)) | Switzerland (German region) | 79 (78.2) | 2 (50) |
| Switzerland (French region) | 22 (21.8) | – | |
| Germany | – | 1 (25) | |
| UK | – | – | |
| Marital status (n (%)) | Single | 13 (12.9) | – |
| Married/cohabiting | 68 (67.3) | – | |
| Divorced, separated or widowed | 16 (15.9) | – | |
| Not reported | 4 (4) | – | |
| Highest educational degree (n (%)) | Tertiary level | 37 (36.7) | – |
| Upper secondary | 48 (47.5) | – | |
| Compulsory | 13 (12.9) | – | |
| No completed education | 1 (1) | – | |
| Not reported | 2 (2) | – | |
| Employment (n (%)) | Employed | 50 (49.5) | – |
| Full time (80%–100%) | 22 (21.8) | – | |
| Part time (<80%) | 28 (27.9) | – | |
| Reasons for non-employment (n (%)) | Retired | 30 (29.7) | – |
| On disability or sick leave | 10 (9.9) | – | |
| In training/student | 7 (7) | – | |
| Looking for work | 4 (4) | – |
| Family members | Qualitative (n=1) | ||
| Sex (n (%)) | Female | – | 1 (100) |
| Country of healthcare provision (n (%)) | Germany | – | 1 (100) |
| Healthcare professionals, | Quantitative (n=47) | Qualitative (n=12) | |
| Sex (n (%)) | Female | 40 (85.1) | 10 (83.3) |
| Age (years) (median (IQR)) | 41 (31–51) | ||
| Country of workplace (n (%)) | Switzerland | 47 (100) | 6 (50) |
| Austria | 2 (16.7) | ||
| Belgium | 1 (8.3) | ||
| Sweden | 1 (8.3) | ||
| USA | 2 (16.7) | ||
| Working experience (years) (median (IQR)) | 13 (7–23) | – | |
| Rheumatology experience (years) (median (IQR)) | 6 (3–12) | – | |
| Number of SSc patients per year (patients) (median (IQR)) | 15 (5–29) | – | |
| Position (n (%)) | Registered nurse | 13 (27.2) | |
| Physiotherapist | 10 (21.3) | 2 (16.7) | |
| Rheumatologist | 9 (19.2) | 2 (16.7) | |
| Occupational therapist | 9 (19.2) | 4 (33.3) | |
| Advanced practice nurse | 2 (4.3) | 3 (25) | |
| General practitioner | 1 (2.2) | – | |
| Psychologist | 1 (2.2) | – | |
| Social worker | 1 (2.2) | – | |
| Health policy | – | 1 (8.3) | |
| Not reported | 1 (2.2) | – | |
| Working setting (n (%)) | University hospital | 36 (76.6) | – |
| Non-university hospital | 7 (14.8) | – | |
| Private outpatient clinic | 2 (4.3) | – | |
| Rehabilitation clinic | 2 (4.3) | – |
lcSSc, limited cutaneous systemic sclerosis; dcSSc, diffuse cutaneous systemic sclerosis.