Table 1 Demographics of participants of the first and second survey
First survey | Second survey | |||||
|---|---|---|---|---|---|---|
Respondents (number; %) | Total | 278 (100%) | Total | 303 (100%) | ||
Patients | 141 (50.7%) | Patients | 125 (41.3%) | |||
Carers | 88 (31.6%) | Carers | 136 (44.9%) | |||
Clinicians | 49 (17.6%) | Clinicians | 42 (13.9%) | |||
Level of education of respondenta (number; %) | Patients | Primary school | 22 (15.6%) | Patients | Primary school | 3 (2.4%) |
PSE | 21 (14.9%) | PSE | 17 (13.6%) | |||
SGSE | 13 (9.2%) | SGSE | 22 (17.6%) | |||
PUE | 19 (13.5%) | PUE | 15 (12.0%) | |||
SVE | 26 (18.4%) | SVE | 25 (20.0%) | |||
HPE | 20 (14.2%) | HPE | 18 (14.4%) | |||
University | 13 (9.2%) | University | 20 (16.0% | |||
Other | 7 (5.0%) | Other | 5 (4.0%) | |||
Carers | Primary school | 5 (5.7%) | Carers | Primary school | 13 (9.6%) | |
PSE | 5 (5.7%) | PSE | 6 (4.4%) | |||
SGSE | 4 (4.5%) | SGSE | 12 (8.8%) | |||
PUE | 2 (2.3%) | PUE | 2 (1.5%) | |||
SVE | 14 (15.9%) | SVE | 38 (27.9%) | |||
HPE | 43 (48.9%) | HPE | 47 (34.6%) | |||
University | 12 (13.6%) | University | 12 (8.8%) | |||
Other | 3 (3.4%) | Other | 6 (4.4%) | |||
Age of responding patient (mean; range) | mean 17.6 (range 4–55) years | mean 19..95 (range 10–52) years | ||||
JIA subtype of patient (number; %) | Polyarticular JIA | 93 (40.6%) | Polyarticular JIA | 110 (42.3%) | ||
Oligoarticular JIA | 57 (24.8%) | Oligoarticular JIA | 50 (19.2%) | |||
Psoriatric arthritis | 10 (4.4%) | Psoriatric arthritis | 15 (5.7%) | |||
Enthesitis-related arthritis | 2 (0.9%) | Enthesitis-related arthritis | 5 (1.9%) | |||
Systemic JIA | 18 (7.9%) | Systemic JIA | 31 (11.9%) | |||
Don’t know | 49 (21.4%) | Don’t know | 50 (19.2%) | |||
Disease duration in years (mean; range) | 8.8 years (0–65 years) | 9.0 years (0–45 years) | ||||
Uveitis (number; %) | Yes | 51 (22.2%) | Yes | 66 (25.3%) | ||
No | 174 (76.0%) | No | 189 (72.4%) | |||
Don’t know | 4 (1.7%) | Don’t know | 6 (2.3%) | |||
Location of treatment centre (number; %) | Groningen | 72 (25.9%) | Groningen | 48 (15.8%) | ||
Utrecht | 49 (17.6%) | Utrecht | 51 (16.8%) | |||
Nijmegen | 10 (3.6%) | Nijmegen | 5 (1.7%) | |||
Boxmeer | 29 (10.4%) | Boxmeer | 31 (10.2%) | |||
Amsterdam (Reade) | 15 (5.4%) | Amsterdam (Reade) | 13 (5.0%) | |||
Amsterdam (UMC) | 10 (3.6%) | Amsterdam (UMC) | 13 (5.0%) | |||
Leiden | 10 (3.6%) | Leiden | 18 (6.9%) | |||
Rotterdam | 79 (28.4%) | Rotterdam | 82 (27.1%) | |||
Maastricht | 1 (0.4%) | Maastricht | 5 (1.7%) | |||
Other | 3 (1.1%) | Other | 37 (12.2%) | |||