Continuing specialist care into adulthood in young people with juvenile idiopathic arthritis: a retrospective cohort study using electronic health records in England.

OBJECTIVES: This study aimed to measure 1) the proportion of children who continue to receive specialist care (rheumatology/ophthalmology) as adults, 2) the characteristics associated with continuing specialist care, and 3) the frequency of specialist care appointments in both paediatric and adult services. METHODS: A retrospective cohort of young people with JIA was identified from UK primary care electronic health records (Clinical Practice Research Datalink (CPRD)) between 01/04/2003-31/12/2018. To be included in the study cases needed to have at least one year registration at their GP beyond age 18 and linkage to Hospital Episodes Statistics (HES) data for secondary care information. All specialist care outpatient visits were identified from HES outpatient data. RESULTS: There were 666 young people included in the study. Of those, 427 (64%) received specialist care beyond age 18, 90 (13%) had their last recorded contact between 16-17 years and 149 (22%) did not continue after 16 years. Older age at diagnosis, female gender, greater deprivation and a childhood diagnosis of uveitis were associated with continuing specialist care beyond age 18. Of those continuing beyond 18, 35% (n = 153) were subsequently discharged by study end date. Of all those discharged, 32% had a missed appointment recorded after the last attended visit suggesting failure to attend. CONCLUSIONS: Two-thirds of young people with JIA continue to receive specialist care beyond age 18. This is useful information for children and young people with JIA and their families planning for their future, and for clinicians planning healthcare services