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

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.

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.

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.

There were 3074 adults with CHD and 324 siblings who answered the financial fragility question. The prevalence of financial fragility was 20.6% for individuals with CHD versus 12.7% in siblings (p = 0.02); individuals with CHD had higher odds (OR 1.50, 95% CI 1.04-2.17, p = 0.029) of financial fragility compared to siblings. 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.

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.