Abstract Body (Do not enter title and authors here):
Background: Survivors of infant heart surgery are at greater risk for neurodevelopmental (ND) disorders. Rates of ND diagnoses (dx) and resource utilization are derived from referral centers or single-state studies, with few multi-state data on diagnosis and utilization across inpatient and outpatient settings.
Methods: We characterized ND dx, medications, screening/evaluation, and non-medical therapies up to 5 years of life among children born in 2016-2020 in the Merative MarketScan Medicaid Claims database from 12 anonymized states. Surgical complexity was assessed with RACHS-2 category. Cox proportional hazards regression was used to identify risk factors for time to 1) first ND dx and 2) first ND evaluation/intervention.
Results/Data: Among 3,147 patients enrolled for a mean 30.5 months, surgery was neonatal in 48%; 23% had a genetic dx; and highest RACHS-2 category was 1= 30%, 2=29%, 3=13%, 4=18%, and 5=10%. Brain imaging was performed in 13%, most commonly MRI (8%). Without adjusting for variable follow-up, the proportion with ≥1 ND dx was 41%, most commonly Communication Disorder (25%), Global Developmental Delay (15%), and Motor Disorder (19%). At latest follow-up, 85% had received ≥1 ND service and 78%, ≥1 direct intervention (ST, OT, and/or PT). Brief ND screening was completed in >58%, but few had psychological/neuropsychological (6.6%) or comprehensive developmental (8.5%) evaluation. Use of stimulants (0.5%), anti-depressants (0.1%) and antipsychotics (0.2%) were uncommon, but anticonvulsants had been used in 7.3%. Independent risk factors for earlier time to any ND dx were Black (p=0.043) or Hispanic (p=0.032) vs. White race/ethnicity, and RACHS-2 Category 4 (p=0.002) or 5 (p=0.007) vs. 1. Independent risk factors for shorter time to first ND evaluation or intervention included RACHS-2 Classes 2 (p=0.012), 4 (p<.001), and 5 (p<.001). Birth sex and genetic abnormalities were not significant predictors of ND dx or utilization. Data for center and region were not available.
Conclusions: The prevalence of ND dx and utilization of ND services was high up to age 5 years in this population-based sample of publicly insured children who underwent infant heart surgery. Rates of developmental screening were comparable to those in general pediatric samples, but few children received formal ND evaluations, falling short of AHA recommendations for universal developmental evaluation.