Table 1 Demographic and clinical care details

Number

Questionnaire completed by

 Parent

229 (79%)

 Child or Young person (12–18 years)

44 (15%)

12-14yrs

6

15yrs

9

16yrs

8

17yrs

10

18yrs

11

 Parent & child dyad

18 (6%)

 Total

291 (100%)

Age of child or young person

0-18yrs (median 12)

(8.5, 15) IQR

How long is it since you or your child/young person was diagnosed?

 Within the last year

42 (14%)

 1–3 yrs ago

81 (28%)

 4–6 yrs ago

65 (22%)

 Longer than 6yrs ago

103 (35%)

Total

291 (100%)

Which structure of care best describes the type of care you or your child / young person receives for your/their JIA?

 Shared care between local & specialist hospital

131 (45%)

 Care from local paediatrician only

19 (7%)

 Rheumatologist at an adult clinic

28 (10%)

 Specialist hospital – no local care

73 (25%)

 Other

38 (13%)

Total answered

289/291 (99%)