Financial fragility in adults with CHD: a report from the CHD Project to Understand Lifelong Survivor Experience

BACKGROUND: Understanding the long-term implications of CHD has become a priority as survival rates have improved. Little is understood about the economic implications of living with CHD into adulthood. OBJECTIVES: We aimed to determine the prevalence and risk factors of financial fragility (i.e., ability to pay $2,000 for an emergency expense) among adults with CHD in the United States and compare outcomes to their healthy siblings. METHODS: We conducted a cross-sectional study using data from the CHD Project to Understand Lifelong Survivor Experience survey (2021-2023). The survey assessed demographics, medical history, and economic outcomes, including financial fragility. Analyses included chi-square and Wilcoxon rank-sum tests with multivariable logistic regression models adjusted for demographic and socioeconomic factors. Single ventricle anatomy was the only CHD group significantly associated with financial fragility (aOR 1.59, 95% CI 1.12-2.26). Financially fragile individuals were more likely to report blindness, be female or a race other than non-Hispanic white, and have single ventricle CHD. CONCLUSION: Adults with CHD experience greater financial fragility than their siblings and disease severity is associated with increased risk. Addressing financial fragility is essential to mitigate the long-term economic burden of CHD on patients and families.