No abstract

ongenital heart disease (CHD) affects nearly 1% of US children and is associated with significant health care costs. Recurrent hospitalizations, surgical p ro c e d u re s , a n d o u t p at i e nt s e r v i c e s c re ate l a rge expenditures for families of children with CHD, even for those who have insurance, 1 and children with CHD frequently have additional comorbidities that contribute to out-of-pocket costs. 2 Indirect costs from lost wages and caregiver responsibilities further compound the financial burden associated with direct medical care.Recent data estimate that approximately 90% of families of children with CHD experience financial hardship. 3 However, little is known about how financial hardship affects families' ability to meet essential n e e d s o r o b t a i n m e d i c a l c a r e . S t u d i e s o n a d u l t s with atherosclerotic disease, c ancer survivors, and f a m i l i e s o f c h i l d r e n w i t h m e d i c a l c o m p l e x i t i e s suggest that competing financial priorities may result in cost shifting away from patients' medical care, which can negatively impact patient outcomes. [3][4][5][6][7] We used data from the National Health Inter view Sur vey to assess the national prevalence of financial hardship because of medical bills among families of children with CHD and the association of such hardship with food insecurity, delayed care because of cost, and cost-related medication nonadherence. 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. RESULTSOf 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 har...