Author: Sara Habibipour
As medical advancements allow those born with congenital heart defects to live through adulthood, new challenges arise related to inequalities in accessing treatment for this condition, especially when transitioning from pediatric to adult cardiac care.
Congenital heart defects (CHD) refer to abnormalities of the heart that are present in an infant at birth; it results when the heart–or blood vessels of the heart–don’t properly develop during pregnancy. Structural issues can usually be addressed with surgery, however it does not always provide a complete cure. Many may need multiple surgeries throughout their lifetime.
Social determinants of health affect outcomes of congenital heart defects at every stage from who is diagnosed prenatally, to access to surgeries and treatment (as well as their outcomes), to transitioning from pediatric to adult care.
Individuals who lack access to healthcare for any reason are most at risk from suffering more severe outcomes from congenital heart disease. Particular to this condition, the transition from pediatric to adult care is a critical time period because many often lose insurance at this time (usually ages 18-26).
Beyond surgery, depending on the location and funding of a hospital, there are factors that influence follow-up and supportive care, such as access to home monitoring and visitation programs which are crafted to support nutrition, growth, and cognitive development (ex: hospital-based homeschool programs) for children living with a congenital heart defect. Further, the availability of non-English language providers can make a significant difference in the quality of care at different institutions.
A research study done in 2020 showed that CHD-related infant mortality rates significantly differ by whether or not a mother lives in a metropolitan area with a ranked top-50 pediatric cardiac center. For infants whose mothers did not live proximal to a top-50 pediatric cardiac center, the adjusted CHD-infant mortality rate was 28% higher than for mothers who lived close to one of these specialized centers.
Currently, there are fewer than 500 CHD specialists in the United States (American Heart Association). These specialists are primarily located in large heart hospitals in urban centers, contributing to the lack of specialty providers and higher CHD-infant mortality rates for those living farther from pediatric cardiac centers, as mentioned earlier. The lack of congenital heart defect specialists largely stems from the lack of funding for subspecialty fellowships in pediatrics and adult cardiac care. While Medicaid funds internal medicine residency slots, it often does not provide significant funding for specific pediatric and adult subspecialties, such as congenital heart defect care.
Of CHD specialists, only 8% are from diverse racial and ethnic groups (American Heart Association), which is problematic especially considering that the overall CHD incidence rate is higher in Asian and Black ethnic groups compared to Whites (Knowles et. al). Representation in specialties such as cardiology–and even more in their subspecialties–remains a large issue in the medical field. Suggestions to improve diversity within cardiac subspecialties include high school and college mentorship programs encouraging youth to pursue careers in healthcare, reducing costs of higher education, establishing and funding programs for historically underrepresented groups in medical schools, etc.
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Sources:
https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.119.043392
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