Access to Care and Diagnostic Delays in Juvenile Dermatomyositis: Results From the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry

OBJECTIVE: To determine factors associated with diagnostic delays and outcomes in juvenile dermatomyositis (JDM) in the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry (CLR). METHODS: This was a cross‐sectional study of subjects aged 0 to 17 years with JDM enrolled to the CLR from 2010 to 2015. Access to care was measured by calculating the distance from the subject zip code of residence to the treating pediatric rheumatology center and determining the state density of pediatric rheumatologists based on the 2015 American College of Rheumatology Workforce Study. Delay was categorized as early (<30 days), typical (1‐3 months), moderate (3‐12 months), and severe (>12 months). Ordered generalized additive models were used to determine the association between these measures and diagnostic delays. RESULTS: The median time to diagnosis was 3.1 months; 37.2% of patients experienced moderate delays, and 14.6% experienced severe delays. In a univariate analysis, younger age of disease onset and male sex were associated with delays. Using a generalized additive model accounting for age, sex, race, and ethnicity, increasing distance from treating pediatric rheumatologist and younger age at disease onset were associated with diagnostic delay. There was no association between the state density of rheumatologists and diagnostic delays in this model. CONCLUSION: In the CLR, we found moderate to severe diagnostic delays in the majority of subjects with JDM. Our data suggest that access to care, measured as the distance traveled to treating rheumatologist, is an important factor associated with delays in care but also highlight age as a contributing factor, suggesting that JDM may be less recognizable in young children.