The economic burden of complex CHD in the United States

Area of Science:

• Cardiovascular Medicine
• Health Economics
• Pediatric Cardiology

Background:

• Congenital heart defects (CHDs) affect approximately 1% of newborns in the U.S., with complex cases necessitating lifelong, intensive medical care.
• Despite their severity, the economic impact of complex CHDs remains underquantified, leading to insufficient research funding and investment.
• Existing data gaps hinder the recognition of the substantial financial burden imposed by complex CHDs on families and healthcare systems.

Purpose of the Study:

• To quantify the financial and economic impact of six complex CHDs.
• To compare the direct, indirect, and mortality costs of complex CHDs with coronary heart disease and congestive heart failure.
• To highlight the disproportionate economic burden of complex CHDs despite their lower prevalence.

Main Methods:

• Identification and quantification of direct, indirect, and mortality costs associated with six complex CHDs.
• Comparative analysis of these costs against those of coronary heart disease and congestive heart failure.
• Assessment of the economic impact on families, including out-of-pocket expenses and workforce participation.

Main Results:

• Complex CHDs incur annual per-patient direct and indirect costs four times higher than coronary heart disease and eight times higher than congestive heart failure.
• The average lifetime direct and indirect cost for complex CHDs is $2.1 million per patient, approximately 44 times that of congestive heart failure.
• Families bear significant financial strain, with 31% of lifetime costs incurred in the first five years and an average out-of-pocket expense of $190,000; many caregivers reduce work hours or leave the workforce.
• The annual national cost of complex CHDs is estimated at $74 billion, with a total lifetime economic impact exceeding $3.35 trillion.

Conclusions:

• Complex CHDs represent a substantial and often underestimated economic burden on individuals, families, and the healthcare system.
• The systemic under-recognition of this economic toll has resulted in chronic underinvestment in research, impacting patient outcomes.
• An interdisciplinary approach involving research institutions, policymakers, and clinical systems is essential to address the economic and human cost of complex CHDs.