Table 1.
Sample characteristics of JIA patient sample (n = 23, SD in brackets)
| Average age (years) | |
| All patients (n = 23) | 21.4 (16.8) |
| Adult patients (n = 10) | 38.5 (9.8) |
| Adolescent patients (n = 13) | 8.3 (3.8) |
| Average diagnosis age (years) | |
| All patients (n = 23) | 5.2 (4.4) |
| Adult patients (n = 10) | 5.9 (5.2) |
| Adolescent patients (n = 13) | 4.6 (3.9) |
| Sex | |
| Male | 21.7 % |
| Female | 78.3 % |
| Disease subtype | |
| Systemic-onset juvenile arthritis (Still’s disease) | 30.4 % |
| Oligoarticular arthritis | 26.1 % |
| Rheumatoid factor-positive polyarthritis | 17.4 % |
| Rheumatoid factor-negative polyarthritis | 8.7 % |
| Enthesitis-related arthritis (spondylarthropathies) | 4.3 % |
| Juvenile psoriatic arthritis | 4.3 % |
| Unclassified types | 8.7 % |
| Is there a caregiver? | |
| Yes (n = 10) | 43.5 % |
| No (n = 13) | 56.5 % |
| Average age of (principal) caregiver (years) | 43.1 (9.7) |
| Average informal care hours per week (whole sample) | 11.8 (29.1) |
| Average informal care hours per week (if there is a caregiver) | 20.3 (23.6) |
| Health Related Quality of Life (Visual Analog Scale) | |
| Adult JIA patients (n = 10) | 49.00 (12.43) |
| Visual Analog Scale score for general population a | 86.56 (13.79) |
| Main Caregivers for JIA patients (n = 7) | 67.14 (26.12) |
| Visual Analog Scale score for general population b | 86.56 (13.79) |
| Health Related Quality of Life (EQ-5D index score) | |
| Adult JIA patients (n = 10) | 0.262 (0.239) |
| EQ-5D index score for general population a | 0.91 (0.16) |
| Main Caregivers for JIA patients (n = 7) | 0.663 (0.367) |
| EQ-5D index score for general population b | 0.91 (0.16) |
| Average Barthel Index (n = 17) | 16.2 (3.6) |
| Average Zarit scale (n = 8) | 22.9 (6.6) |
aReflects general population social tariffs/utilities for the respective patients’ age group (i.e. 35–44)
bReflects general population social tariffs/utilities for the respective caregivers’ age group (i.e. 35–44)