Healthcare barriers impact survival rates for adult congenital heart disease

People with congenital heart disease living in states with low household incomes and limited access to health insurance and the specialized care they need may be more likely to become disabled or die from congenital heart disease, according to new, independent research published today in the Journal of the American Heart Association, an open-access, peer-reviewed journal of the American Heart Association.

Over the past 30 years, more children with congenital heart disease have survived into adulthood due to better surgical and catheter-based treatments, as well as improvements in medical care. As these children grow into adults, they continue to require specialized cardiac care, as recommended by evidence-based American Heart Association/American College of Cardiology guidelines, to maintain lifelong health and well-being. 

This is one of the first studies to examine the connection between the health and survival of adults with congenital heart disease based on state-level data from the Global Burden of Disease Study along with income and insurance data from the U.S. Census, spanning from 1990 to 2021. Researchers examined the relationship among income levels, disability and death rates for nearly 300,000 adults with congenital heart disease aged 20 years and older.

Understanding how social and economic factors can influence survival and outcomes is essential. Long-term outcomes and quality of life depend heavily on access to specialized, lifelong care for people with congenital heart disease. Seeing how these factors affect patients long term allows us to better identify people at highest risk for complications. Then we can work toward improving access and reducing care gaps for people who have congenital heart disease."

Anitha John, M.D., Ph.D., senior author, medical director of the Washington Adult Congenital Heart Program, Children's National in Washington, D.C.

What are the key findings of the analysis?

• As median household income increased in a state, the death rate for people with congenital heart disease decreased.
• The relationship between death rate and individual income levels was stronger than the connection between death rates and the percentage of residents without insurance in each state. This suggests that simply having health insurance did not guarantee that people accessed the specialized care required for congenital heart disease. One reason for this might be differences in types of insurance coverage versus the overall presence of insurance.
• Geography and access to resources (namely, specialized cardiac care) likely play a profound role in death and disability in adults with congenital heart disease in the U.S. More research is needed to understand these connections and their impact on the health, well-being and survival of people with congenital heart disease.

"While having health insurance does matter, it does not explain the differences we found in terms of how long people with congenital heart disease live," John said. "This indicates that insurance alone doesn't guarantee access to care. People may still face barriers if their insurance doesn't cover specialized heart care or if out-of-pocket costs are too high. In many cases, specialized care may not be available in their area at all. We need to make sure everyone with congenital heart disease has the same access to specialty care throughout their lifetime, regardless of where they live."

"We also need more trained specialists in adult congenital heart conditions. These medical experts should be more evenly distributed across the country, particularly where congenital heart disease patients live and work. Additionally, we need better systems to help patients get referred to the right care throughout their lives," she said. "Expanding telehealth and improving insurance networks may also help to improve access."

Michelle Gurvitz, M.D., an American Heart Association volunteer expert and chair of the writing committee for the 2025 ACC/AHA/HRS/ISACHD/SCAI joint Guideline for the Management of Adults With Congenital Heart Disease, said, "The 2025 guideline outlines when to seek expert assistance and how specialists can work together with other healthcare providers to enhance access to care. Many patients stop receiving specialized care when they transition from pediatric to adult care. Additionally, this study shows that some patients cannot see specialists because of issues such as insurance or their location." Gurvitz, who was not involved in this study, is also a cardiologist at Boston Children's Hospital and an associate professor of pediatrics at Harvard Medical School.

According to the American Heart Association's 2026 Heart Disease and Stroke Statistics, congenital heart defects (heart or blood vessel issues that are present at birth) are one of the most common birth defects around the world. Congenital heart disease is the leading cause of death in the U.S. from a condition present since birth.

What are the study details, background, design and limitations?

• Researchers reviewed data on death rates and "disability-adjusted life years" – the number of healthy life years lost due to a condition.
• Income levels, including household income and insurance status (considered uninsured if they lacked coverage for a full year), detailed by state were secured from the U.S. Census Bureau data.
• The findings show associations among the data points such as income, but cannot be interpreted as cause and effect. The associations found in the analysis may be influenced by factors like access to care, which the researchers could not directly measure.