Retention in rheumatology care across the juvenile idiopathic arthritis care pathway: from diagnosis through transition

Objective — Juvenile idiopathic arthritis (JIA) is a heterogeneous group of childhood-onset arthritides, many of which require sustained pediatric rheumatology care and transition to adult rheumatology care. We examined longitudinal retention in rheumatology care from diagnosis through adulthood.

Methods — We conducted a population-based longitudinal study of an inception cohort of children/adolescents diagnosed with JIA between 2010 and 2018 and followed until 2024. For each follow-up year, we determined whether patients were engaged in care (at least one pediatric rheumatologist visit), lost to follow-up, or transferred to adult rheumatology care. For individuals transitioning to adult care, we measured the interval between their last pediatric and first adult rheumatologist visits.

Results — Among 2,919 individuals with JIA, median (IQR) age at diagnosis was 11 (6–14) years and 62.6% were female. By five-years of follow-up, 41.5% were engaged in pediatric rheumatology care, with 30.9% lost to follow-up. Among 923 patients who successfully transitioned to adult rheumatologists, 601 (65.1%) were seen within six months of their last pediatric rheumatologist visit. Mean (SD) transition intervals improved over time, decreasing from 584.0 (891.2) days to 150.8 (288.9) by the end of the study period.

Conclusion — Nearly half of individuals with JIA do not remain continuously engaged in pediatric rheumatology care (i.e. did not have at least one pediatric rheumatologist visit per year) through transition to adult rheumatology care, although transition timeliness has improved over time. Further research using detailed clinical data is needed to identify which patients experience gaps in care and to strengthen retention and transition processes.