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Neurodevelopment Among Publicly Insured Children in the First 5 Years After Infant Heart Surgery
Daniel O'Meara1,2,3,4, Brandi Henson5,6, Caitlin K Rollins7,8
1Department of Pediatrics, Boston Children's Hospital, Boston, Massachusetts.
JAMA Network Open
|February 4, 2026
Summary
Infants undergoing heart surgery for congenital heart disease (CHD) have a high risk of neurodevelopmental (ND) disorders. While ND services are frequently utilized, formal evaluations remain underused, highlighting a critical gap in care for these vulnerable children.
Area of Science:
- Pediatric Cardiology
- Neurodevelopmental Disorders
- Public Health
Background:
- Infants with congenital heart disease (CHD) undergoing surgery face significant risks for neurodevelopmental (ND) disorders.
- Existing multistate data inadequately report the prevalence of ND diagnoses and healthcare utilization in this population.
Purpose of the Study:
- To determine the cumulative prevalence and timing of ND diagnoses.
- To characterize healthcare utilization for ND services within the first five years post-infant heart surgery.
- To identify risk factors associated with ND diagnosis and service utilization in publicly insured children.
Main Methods:
- A retrospective cohort study analyzed data from the Merative MarketScan Medicaid Claims Database for children with CHD who had infant cardiac surgery (2016-2020).
- The study tracked time to first ND diagnosis and ND service utilization up to five years post-surgery.
- Statistical analyses identified independent risk factors for ND diagnosis and utilization, including race, ethnicity, and surgical risk category (RACHS-2).
Main Results:
- Over 5 years, 51.7% of children received at least one ND diagnosis, and 82.9% utilized ND services.
- While 55.7% received ND screening, only 6.6% had psychological/neuropsychological evaluations and 8.5% had comprehensive developmental evaluations.
- Black race, Hispanic ethnicity, and higher RACHS-2 categories (4-5) were associated with increased risk for ND diagnosis.
- Higher RACHS-2 categories (2, 4-5) were linked to increased utilization of ND services.
Conclusions:
- Children undergoing infant heart surgery exhibit a high prevalence of ND disorders and substantial utilization of ND services.
- Despite high screening rates, formal ND evaluations are significantly underutilized, indicating a gap in recommended care.
- Race, ethnicity, and surgical complexity are critical factors influencing the timing of ND diagnosis and service use in this population.
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