Background
Methods
Questionnaire description
Statistical analysis
Results
General demographics
Western countries | Non-western countries | P-valuea | |
---|---|---|---|
N
| 420 | 202 | |
Female, n (%) | 286 (68.1%) | 129 (63.9%) | 0.34 |
Age at completion, median [1st quartile, 3rd quartile] | 10 [7, 15] | 11 [8, 15] | 0.50 |
Age at diagnosis, median [1st quartile, 3rd quartile] | 5 [2, 9] | 5 [3, 10] | 0.04 |
Self-reported JIA category, n (%) | |||
Systemic | 57 (13.6%) | 23 (11.4%) | 0.53 |
Oligoarthritis | 106 (25.2%) | 62 (30.7%) | 0.18 |
Polyarthritis RF - | 103 (24.5%) | 41 (20.3%) | 0.29 |
Polyarthritis RF + | 46 (11.0%) | 14 (6.9%) | 0.15 |
Psoriatic | 21 (5.0%) | 5 (2.5%) | 0.21 |
ERA | 25 (6.0%) | 12 (5.9%) | > 0.99 |
Undifferentiated | 19 (4.5%) | 1 (0.5%) | 0.02 |
Don’t know | 43 (10.2%) | 44 (21.8%) | 0.0002 |
Referrals and intervals between visits
Ophthalmology, physiotherapy, and multidisciplinary care
Western countries | Non-western countries | P-valuea | |
---|---|---|---|
N
| 420 | 202 | |
Referrals to: | |||
Ophthalmologist | 327 (77.9%) | 153 (75.7%) | 0.63 |
Physiotherapist | 270 (64.3%) | 155 (76.7%) | 0.002 |
Occupational therapist | 93 (22.1%) | 8 (4.0%) | < 0.0001 |
Social worker | 44 (10.5%) | 1 (0.5%) | < 0.0001 |
Psychologist | 95 (22.6%) | 19 (9.4%) | 0.0001 |
Orthodontist | 79 (18.8%) | 60 (29.7%) | 0.003 |
Indicated access to: | |||
Pain management | 54 (12.9%) | 8 (4.0%) | 0.0009 |
Fatigue management | 16 (3.8%) | 6 (3.0%) | 0.77 |
Support group | 108 (25.7%) | 17 (8.4%) | < 0.0001 |
Age appropriate disease education | 49 (11.7%) | 21 (10.4%) | 0.74 |
Special rehabilitation | 36 (8.6%) | 49 (24.3%) | < 0.0001 |
Counselling and psychological support | 177 (42.1%) | 35 (17.3%) | < 0.0001 |
Emergency information and maintaining contact with doctor between visits
Western countries | Non-western countries | P-valuea | |
---|---|---|---|
N
| 420 | 202 | |
Received information about: | |||
Ongoing care and treatment | 372 (88.6%) | 187 (92.6%) | 0.16 |
What to do in case of worsening symptoms | 316 (75.2%) | 168 (83.2%) | 0.03 |
Contact details urgent advice | 251 (59.8%) | 148 (73.3%) | 0.001 |
Immunizations | 220 (52.4%) | 133 (65.8%) | 0.002 |
Support groups | 136 (32.4%) | 17 (8.4%) | < 0.0001 |
Financial support | 39 (9.3%) | 25 (12.4%) | 0.30 |
School/employers | 87 (20.7%) | 84 (41.6%) | < 0.0001 |
Healthy eating | 59 (14.0%) | 62 (30.7%) | < 0.0001 |
Research | 166 (39.5%) | 110 (54.5%) | 0.0006 |
Appropriate advice with respect to medication: | |||
Immunizations/vaccines | 251 (59.8%) | 150 (74.3%) | 0.0006 |
Travel advice | 130 (31.0%) | 106 (52.5%) | < 0.0001 |
Possible infections | 207 (49.3%) | 135 (66.8%) | < 0.0001 |
How to deal with chickenpox or shingles | 96 (22.9%) | 106 (52.5%) | < 0.0001 |
Means of communication: | |||
Contact paediatric centre by phone | 195 (46.4%) | 144 (71.3%) | < 0.0001 |
Telephone help line | 169 (40.2%) | 110 (54.5%) | 0.001 |
E-mail | 212 (50.5%) | 147 (72.8%) | < 0.0001 |
Waiting time reply for non-urgent questions: | |||
< 24 h | 128 (30.5%) | 67 (33.2%) | 0.56 |
> 24 h and < 48 h | 140 (33.3%) | 62 (30.7%) | 0.57 |
> 48 h | 69 (16.4%) | 14 (6.9%) | 0.002 |