Racial Disparities in Healthcare Use Among Medicaid-Covered Children With Congenital Heart Disease

Racial Disparities in Healthcare Use Among Medicaid-Covered Children With Congenital Heart Disease 1024 683 Lauren Dembeck

In the United States, congenital heart disease is the most common birth anomaly, with almost 40,000 newborns diagnosed each year. As these children grow, they are at increased risk of developing cardiovascular complications. Thus, ensuring they receive recommended cardiology care is essential to their long-term health and well-being.

Racial disparities in health outcomes have been observed among patients with congenital heart disease. Disparities in the receipt of recommended care may contribute to these differences in health outcomes; however, few studies have evaluated if there are racial differences in healthcare use among children with congenital heart disease.

“Receiving the recommended outpatient follow-up care is vital for early detection of problems that could be avoided. Other work has identified racial disparities in health outcomes for individuals with congenital heart disease, and engaging in recommended follow-up care may be an important factor in driving those disparities,” explains Jamie Jackson, PhD, senior author on the study and principal investigator in the Center for Biobehavioral Health in the Abigail Wexner Research Institute at Nationwide Children’s Hospital.

Dr. Jackson and colleagues examined racial differences in health care use among children with congenital heart disease who had Medicaid coverage. Their findings were published recently in the journal Pediatric Cardiology.

Using a decade of claims data (2010-2019) from a pediatric Medicaid Accountable Care Organization, the researchers identified 960 Black and White children with moderate and severe congenital heart disease and who were continuously enrolled in Medicaid for at least 3 years. They assessed annual healthcare use—primary care, cardiac care, and emergency health care — among the children overall and by age (starting age: < 1 year, 1 to 5 years, 6 to 15 years) and race.

Within the three-year follow-up period, 51% of patients had an annual cardiology visit, and 54% had an annual primary care visit.

“Nearly half of these children with congenital heart disease did not have the recommended annual cardiology visit,” says Rose Hardy, PhD, lead author on the study and data scientist in the Center for Child Health Equity and Outcomes Research at the Abigail Wexner Research Institute at Nationwide Children’s. “The majority had seen a cardiologist within the three-year study window, so these children are still receiving cardiology care, although less frequently than recommended.”

Within the 1-to-5-year-old cohort, Black children were 13% less likely to have an annual cardiology visit compared with White children. No other significant racial differences were observed in cardiology care.

Within both the 1-to-5-year-old and 6-to-15-year-old cohorts, Black children were predicted to be more likely to have a primary care visit (12% and 13%, respectively) compared with White children. Black children within the 1-to-5-year-old cohort were also predicted to have fewer emergency department visits in a year compared with their White counterparts.

“The finding that young Black children were less likely to have an annual cardiology visit but more likely to have a primary care visit suggests that greater collaboration and communication between primary care and pediatric specialties could help ensure that these kids are seen at the right times,” adds Dr. Hardy. “That said, as only about half of all children are receiving recommended care, there is clearly much more to be done to ensure that children with congenital heart disease can flourish in any community.”

Potential interventions to improve care among these children include strengthening communication between primary and specialty care providers and using social workers, nurse navigators, and others to help families address social and economic needs that may impede their access to care.

“While major systemic barriers must be eliminated to allow equitable access to quality cardiology care, investment in helping families address their unique needs is something we can do now,” says Dr. Jackson.



Hardy RY, Chavez LJ, Grant VR, Chisolm DJ, Daniels CJ, Jackson JL. Healthcare Use Among Black and White Congenital Heart Disease Medicaid Enrollees. Pediatr Cardiol. 2023 Aug 3. doi: 10.1007/s00246-023-03249-z. Epub ahead of print.

Image credit: Adobe Stock

About the author

Lauren Dembeck, PhD, is a freelance science and medical writer based in New York City. She completed her BS in biology and BA in foreign languages at West Virginia University. Dr. Dembeck studied the genetic basis of natural variation in complex traits for her doctorate in genetics at North Carolina State University. She then conducted postdoctoral research on the formation and regulation of neuronal circuits at the Okinawa Institute of Science and Technology in Japan.