Association of Financial Hardship Because of Medical Bills With Adverse Outcomes Among Families of Children With Congenital Heart Disease

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...

Social Determinants of Disparities in Mortality Outcomes in Congenital Heart Disease: A Systematic Review and Meta-Analysis

“…Having a child with CHD contributes even further to deprivation and stressors for individuals from these vulnerable communities. A recent investigation by Ludomirsky et al revealed that families experienced significant financial strain as a result of having a child with CHD ( 85 ). Data from the 2009–2010 National Survey of Children with Special Health Care Needs in the United States show that 89.1% of families with a child with CHD experienced at least one financial burden, and 14.9% of caregivers needed mental health services due to the child’s health condition ( 86 ).…”

The associations between resilience and socio-demographic factors in parents who care for their children with congenital heart disease

“…A lower GHI predicted lower resilience. Medical expenses for children with CHD are a common cause of financial hardship among families of children with CHD and are associated with high rates of food insecurity and delays in care for these children [ 28 ]. It is important to note that lower GHI is a factor that is difficult to modify through individual effort.…”

“…It is important to note that lower GHI is a factor that is difficult to modify through individual effort. Financial hardship may elicit more stress for the parents of children with CHD [ 28 ]. Efforts to help offset medical expense-related financial burdens for low GHI parents may decrease their coping vulnerability and assure that parents are able to provide quality care for their children with CHD.…”

Poverty, Material Hardship, and Children’s Outcomes: A Nuanced Understanding of Material Hardship in Childhood

“…Finally, the measures of material hardship used in this study particularly reflect the context of poverty and the available measures of material hardship in the U.S. Medical hardship, for example, is unique to the United States, where, despite public insurance programs for low-income individuals, many are nevertheless unable to afford adequate health care [ 56 , 57 ]. As such, the particular degree of overlap between the domains of material hardship and their associations with child outcomes are unique to the U.S. context.…”