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Table 1 Demographics of participants of the first and second survey

From: Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis

  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%)
  1. a Levels of education: PVSE Pre-vocational secondary education (in Dutch: VMBO), SGSE Senior general secondary education (in Dutch: HAVO), PUE Pre-university education (in Dutch: VWO), SVE Secondary vocational education (in Dutch: MBO), HPE Higher professional education (in Dutch: HBO)