Abstract
IMPORTANCE: 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. OBJECTIVE: 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. DESIGN, SETTING, AND PARTICIPANTS: 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. EXPOSURES: CHD and infant heart surgery. MAIN OUTCOMES AND MEASURES: Times from index surgery to first ND diagnosis and ND utilization and their cumulative prevalences by 5 years after index surgery. RESULTS: 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. CONCLUSIONS AND RELEVANCE: 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.