Neurodevelopment Among Publicly Insured Children in the First 5 Years After Infant Heart Surgery

TL;DR

Many children who had heart surgery as infants face neurodevelopmental challenges, but few get proper evaluations, suggesting a need for better follow-up care.

Contribution

The study provides the first multistate analysis of neurodevelopmental outcomes in publicly insured children after infant heart surgery.

Findings

Over half of children had at least one neurodevelopmental diagnosis within 5 years of surgery.

Only 6.6% of children received psychological or neuropsychological evaluations.

Higher RACHS-2 surgery categories were linked to increased risk of delayed neurodevelopmental diagnosis.

Abstract

How prevalent are neurodevelopmental disorders and services within 5 years after infant heart surgery among publicly insured children?

In this cohort study of 3147 children with an index surgery from 2016 to 2020, the 5-year cumulative prevalence rates of at least 1 neurodevelopmental diagnosis or service were 51.7% and 82.9%, respectively. Brief neurodevelopmental screening occurred in more than half of children, but few underwent psychological or neuropsychological (6.6%) or comprehensive developmental (8.5%) evaluation.

In this study, neurodevelopmental diagnoses and services were common after infant heart surgery, but receipt of formal neurodevelopmental assessment was low, suggesting that improved methods are needed to implement society recommendations for universal evaluation in children at high risk.

This cohort study evaluates the rates of neurodevelopmental disorder diagnoses and services among children within 5 years of undergoing infant heart surgery.

Survivors of infant heart surgery for congenital heart disease (CHD) have high risk for neurodevelopmental (ND) disorders; few multistate data report the percentage with ND diagnosis or utilization across health care settings.

To characterize time to and cumulative prevalence of any ND diagnosis and associated health care utilization in the first 5 years after infant heart surgery for publicly insured children.

This retrospective cohort study included children with CHD with a birth hospitalization and infant cardiac surgery between January 2016 and December 2020. Data were obtained from the Merative MarketScan Medicaid Claims Database of deidentified individual Medicaid enrollees across 12 states. Data were analyzed from December 13, 2022, to October 4, 2024.

CHD and infant heart surgery.

Times from index surgery to first ND diagnosis and ND utilization and their cumulative prevalences by 5 years after index surgery.

Among 3147 patients (mean [SD] duration of enrollment, 30.5 [17.4] months), 1686 (53.6%) were male; 619 (19.7%) were Black, 228 (7.2%) were Hispanic, 1051 (33.4%) were White, 145 (4.5%) belonged to additional racial and ethnic groups, and 1108 (35.2%) had missing data on race and ethnicity. Surgery was neonatal (<30 days) in 1518 (48.2%); 709 (22.5%) had a genetic diagnosis; and highest Risk Adjustment for Congenital Heart Surgery (RACHS-2) category was 1 for 945 patients (30.0%), 2 for 915 (29.1%), 3 for 398 (12.9%), 4 for 577 (18.3%), and 5 for 312 (9.9%). The cumulative prevalences of 1 or more ND diagnoses and use of 1 or more forms of ND services were, respectively, 43.5% (95% CI, 42.2%-44.7%) and 80.0% (95% CI, 78.9%-80.9%) at 3 years and 51.7% (95% CI, 50.4%-52.9%) and 82.9% (95% CI, 81.9%-83.8%) at 5 years. Although 1752 (55.7%) had ND screening, fewer had psychological or neuropsychological (207 [6.6%]) or comprehensive developmental (268 [8.5%]) evaluation. Independent risk factors for time to first ND diagnosis were Black race (hazard ratio [HR], 1.14 [95% CI, 1.00-1.30]; P = .04) or Hispanic ethnicity (HR, 1.24 [95% CI, 1.02-1.50]; P = .03) compared with White race and RACHS-2 category 4 (HR, 1.28 [95% CI, 1.09-1.49]; P = .002) or 5 (HR, 1.32 [95% CI, 1.08-1.61]; P = .007) compared with category 1. Independent risk factors for time to first ND utilization included RACHS-2 categories 2 (HR, 1.30 [95% CI, 1.06-1.60]; P = .01), 4 (HR, 1.63 [95% CI, 1.26-2.11]; P < .001), and 5 (HR, 2.25 [95% CI, 1.64-3.10]; P < .001) compared with category 1.

In this cohort study of publicly insured children who underwent infant heart surgery, the prevalence of ND disorders and utilization of ND services was high. Developmental screening percentages were comparable with those in general pediatric samples, but few children received society-recommended formal ND evaluations.

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