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. 2023 May 2;62(5):1936-1943.
doi: 10.1093/rheumatology/keac497.

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

Ruth E Costello  1 , Lianne Kearsley-Fleet  1 , Janet E McDonagh  1   2   3 , Kimme L Hyrich  1   2   4 , Jenny H Humphreys  1   4
Affiliations

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

Ruth E Costello et al. Rheumatology (Oxford). .

Erratum in

Abstract

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) between 1 April 2003 and 31 December 2018. To be included in the study, cases needed to have at least 1 year of registration at their general practice beyond age 18 and linkage to Hospital Episodes Statistics data for secondary care information. All specialist care outpatient visits were identified from Hospital Episodes Statistics outpatient data.

Results: There were 666 young people included in the study. Of these, 427 (64%) received specialist care beyond age 18, 90 (13%) had their last recorded contact at 16-17 years and 149 (22%) did not continue after 16 years. Older age at diagnosis, female gender, less 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 the 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 health-care services.

Keywords: JIA; adolescent medicine; epidemiology; healthcare utilization; outcomes research.

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Figures

Figure 1.
Figure 1.
Flowchart of case definition in CPRD GOLD and Aurum. aValidation = either ≥3 Hospital Episode Statistics (HES) outpatient specialist care (rheumatology/ophthalmology) appointments or a HES inpatient admission coded with JIA, prior to age 16 years
Figure 2.
Figure 2.
Multinomial logistic regression—factors associated with continuing specialist care category
Figure 3.
Figure 3.
Kaplan–Meier survival curve for time in specialist care vs age at diagnosis. CYP: Children and Young People
Figure 4.
Figure 4.
Frequency of rheumatology appointments vs age
See this image and copyright information in PMC

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