Juvenile Idiopathic Arthritis and Out-of-Pocket Costs for Medical and Other Health Professional Visits: The UCAN CAN-DU and CURE International Prospective Study

Objectives To measure out-of-pocket costs related to medical and other health professional visits due to juvenile idiopathic arthritis (JIA). Methods The Canada-Netherlands Personalized Medicine Network in Childhood Arthritis and Rheumatic Diseases (UCAN CAN-DU) and CURE study captures consecutive caregiver reported data including out-of-pocket costs on travel to doctor appointments, treatments or tests, emergency visits or hospitalization, plus costs for travel and treatments related to visiting other health professionals. The cohort includes all subtypes of JIA, and patients across the disease trajectory from new diagnosis to starting or stopping biologic medications. The analytic sample included those with complete data over 1 year period from enrollment in the study on out-of-pocket travel expenses, and cost (in CAD). Generalized Estimating Equations were used to estimate average annual cost as a function of JIA activity state (eg, inactive, minimal, moderate/high), time from enrollment (ie, baseline, 3, 6, 9, 12 months), and patient age group (ie, 0-4, 5-9, 10-15, 16+ years). Results Our analytic sample included 115 patients. Over 1 year, 91% of families reported visiting doctors with the most visited being rheumatologists (44%), then eye doctors (33.8%). Travel cost was $311 (SDpooled $154; range $10-7,367). Travel costs were comparable across covariates in the GEE. For 40% who reported visits for treatments or tests, the most frequent were lab tests (37.4%) and shots/infusions (22.4%). Travel cost was $364 (SDpooled $106; range $12-2,880). These costs were significantly higher for moderate/minimal disease activity compared to high disease activity (related to per-visits, not visit numbers), and significantly higher over time, but significantly lower for older patients. Few families had emergencies (5.6%) or hospitalizations (2.2%). Travel cost for these was $403 (SDpooled $122; range $72-1,028), and significantly higher for patients 16 years and older. Over 1-year, 57.4% of families reported visiting other health professionals. Of these, 48% reported not paying any portion, the rest paid part/all. Health professional treatment costs were $5,207 (SDpooled $2,658; range $45-33,058), with costs significantly lower for older patients. The most visited health professionals were physiotherapists (33.8%), then orthodontists (15.6%), and psychologists (10%). Travel cost was $458 (SDpooled $364; range $9-5,634). There was no significant difference in travel costs across covariates. Overall, more caregivers reported parking costs for health care visits, compared to other health professional visits (71-89% vs 25%). For all visit types, 20-25% reported fuel expenses. Conclusion Families with children with JIA have substantial annual out-of-pocket costs, potentially creating financial barriers and inequitable access to care.

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