Multi-Site Study Reveals Addressable Socioeconomic Barriers to Prenatal Diagnosis of Congenital Heart Defects

December 18, 2023

Prenatal diagnosis of congenital heart defects – the most common birth defects in the United States – is associated with improved outcomes. Despite its importance, however, overall prevalence of prenatal diagnosis is low (12-50 percent). A recent multi-center study surveyed caretakers of infants who received congenital heart surgery in the Chicago area and found that social determinants or influencers of health constitute significant barriers to prenatal diagnosis from the patients’ perspective.

In the study, nearly 80 percent reported at least one socioeconomic barrier to prenatal diagnosis. The most common socioeconomic barriers were difficulty with appointment scheduling, distance to care or lack of transportation access, challenges with getting time off work to attend appointments, and lack of childcare. Findings were published in the journal Prenatal Diagnosis.

“Undetected congenital heart defects on ultrasound, and technical ways to improve detection, are robust areas of research in the field of fetal cardiology. But we found that socioeconomic factors that interfere with prenatal diagnosis were even more commonly reported by patients than undetected defects on ultrasound,” said lead author Joyce Woo, MD, MS, cardiologist at Ann & Robert H. Lurie Children’s Hospital of Chicago and Assistant Professor of Pediatrics and Medical Social Sciences at Northwestern University Feinberg School of Medicine. “The strength of our study comes from talking to patients, which allowed us to dive deeper into the details and uncover socioeconomic barriers that can be directly addressed so that we can potentially improve the rate of prenatal diagnosis and simultaneously lessen disparities in prenatal diagnosis.”

From a policy standpoint, paid sick leave might help resolve some of the work-related barriers to prenatal diagnosis, such as fear of losing a job or income due to taking time off for medical care. In Illinois, effective January 2024, employers must guarantee 40 hours per year of paid sick leave for full-time employees.

“A natural experiment might estimate the effect of this type of sick leave policy on adherence to medical care, and even longer-term outcomes like prenatal congenital heart defects diagnosis,” said Dr. Woo. “This could directly inform advocacy efforts to expand paid sick leave in other jurisdictions.”

Research at Ann & Robert H. Lurie Children’s Hospital of Chicago is conducted through Stanley Manne Children’s Research Institute, which is focused on improving child health, transforming pediatric medicine and ensuring healthier futures through the relentless pursuit of knowledge. Lurie Children’s is a nonprofit organization committed to providing access to exceptional care for every child. It is ranked as one of the nation’s top children’s hospitals by U.S. News & World Report. Lurie Children’s is the pediatric training ground for Northwestern University Feinberg School of Medicine.