Importance: Congenital heart disease (CHD) carries significant health care costs and out-of-pocket expenses for families. Little is known about how financial hardship because of medical bills affects families' access to essential needs or medical care.
Objective: To assess the national prevalence of financial hardship because of medical bills among families of children with CHD in the US and the association of financial hardship with adverse outcomes.
Design, setting, and participants: This cross-sectional survey study used data on children 17 years and younger with self-reported CHD from the National Health Interview Survey of US households between 2011 and 2017. Data were analyzed from March 2019 to April 2020.
Exposures: Financial hardship because of medical bills was classified into 3 categories: no financial hardship, financial hardship but able to pay medical bills, and unable to pay medical bills.
Main outcomes and measures: Food insecurity, delayed care because of cost, and cost-related medication nonadherence.
Results: Of 188 families of children with CHD (weighted sample of 151 537 families), 48.9% reported some financial hardship because of medical bills, with 17.0% being unable to pay their medical bills at all. Compared with those who denied financial hardships because of medical bills, families who were unable to pay their medical bills reported significantly higher rates of food insecurity (61.8% [SE, 11.0] vs 13.6% [SE, 4.0]; P < .001) and delays in care because of cost (26.2% [SE, 10.4] vs 4.8% [SE, 2.5]; P = .002). Reported medication adherence did not differ across financial hardship groups. After adjusting for age, race/ethnicity, and maternal education, the differences between the groups persisted. The association of financial hardship with adverse outcomes was stronger among patients with private insurance than those with Medicaid.
Conclusions and relevance: In this study, financial hardship because of medical bills was common among families of children with CHD and was associated with high rates of food insecurity and delays in care because of cost, suggesting possible avenues for intervention.