Out-of-pocket Cost Burden in Pediatric Inflammatory Bowel Disease: A Cross-sectional Cohort Analysis.

Pediatric inflammatory bowel disease (IBD), consisting of Crohn's disease (CD) and ulcerative colitis (UC) varieties, is a relapsing and remitting chronic disease that occurs with a peak incidence in the adolescent and young adult years. Compared with IBD presentation in adults, children often present with more severe disease requiring acute care services and subsequent escalation through higher levels of medical and surgical therapies.1–3 This results in a concomitant increase in total costs of which a component is out-of-pocket (OOP) by patients' families. Both health care providers and patients know from experience that the direct financial burden of pediatric IBD is high. In particular, parents of children with more relapsing or uncontrolled IBD subtypes may absorb substantial financial stress, disparately burdening families in lower income strata not covered by private or government-subsided assistance programs. OOP financial impact on families responsible for children and young adult–dependents with pediatric IBD is incompletely described in the literature.4 Although incompletely characterized, it is clear from existing studies that the OOP costs of pediatric IBD for patients and their families are substantial. One study demonstrated that the cost of pediatric IBD in patients younger than 20 years is significantly higher than for adults (∼$9500 versus ∼$8100 annually) without variation based on geographical region with the United States.5 Other studies suggest that since the early 2000s, IBD health care costs have shifted away from hospitalization and surgery expenses, with outpatient visits and medication expenditures accounting for the majority of dollars spent on the disease,6,7 likely driven by increasing use of anti-tumor necrosis factor-α (anti-TNFα) agents. Recognition of this trend is also important in considering that other existing cost studies may have predated the widespread or first-line use of anti-TNFα agents.8–11 At the federal policy level, the shift towards higher OOP cost burden for pediatric patients with IBD and their families is an example of the context for which the guidance by the Institute of Medicine aims to deliver higher value medical care at lower costs.12 Cost-effective pediatric IBD medical care is particularly important because early-onset worse disease severity will necessitate a longer lifetime course with greater potential for direct and indirect financial stress on patients and families.13,14 However, increased OOP costs run counter to the Institute of Medicine vision to achieve the best care at lower costs. In this analysis, we hypothesized that children with pediatric IBD who have relapsing disease requiring more health care utilization and families with lower annual income disparately absorb substantial OOP cost burden. To our knowledge, there is no study to date characterizing the OOP costs burden in families with children affected by IBD. There were 2 aims of this study: (1) to describe the mean and variability of the annual OOP costs for families with children affected by IBD and (2) to identify IBD attributes that correlate with higher OOP cost burden.