Juvenile Idiopathic Arthritis and Out-of-Pocket Costs for Medical and Other Health Professional Visits: The UCAN CAN-DU and CURE International Prospective Study
Bibliographic record
Abstract
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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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.003 | 0.005 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.003 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.002 | 0.001 |
| Open science | 0.001 | 0.001 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".