Neurodevelopmental disorders common after infant heart surgery

Researchers have identified high rates of neurodevelopmental (ND) disorders and utilization of ND services among publicly insured children undergoing infant heart surgery, publishing their findings in JAMA Network Open.¹

Nearly 25% of congenital heart disease (CHD) cases are critical congenital heart disease (CCHD), which has been linked to significant rates of ND impairments. This has led the American Heart Association to release recommendations in 2012 and 2014 to survey, screen, and manage developmental disorders in children with CHD.²

“Despite wide dissemination of these recommendations, accurate implementation rates for neurodevelopmental evaluation and therapies in diverse patient populations are unknown,” wrote investigators.¹

Neurodevelopmental assessment

The retrospective analysis was conducted to evaluate the time between index surgery with the first associated health care utilization and cumulative prevalences within 5 years. Participants included children with CCHD enrolled in Medicaid undergoing cardiac surgery in the first year of life from January 2016 to December 2020.

These patients were identified from the MarketScan Medicaid Claims Database (Merative). Investigators determined whether diagnoses were behavioral or neurological based on International Classification of Diseases, 10th revision codes. Relevant codes were also assessed to determine single ventricle status.

The time between first-year index surgery and either neurodevelopmental diagnoses or any neurodevelopmental utilization was reported as the primary outcome. Investigators also reported the cumulative rates of any neurodevelopmental diagnosis and utilization.

Types and percentages of diagnostic tests and evaluations were reported as secondary outcomes. Covariates included sex, race and ethnicity, Risk Adjustment for Congenital Heart Surgery (RACHS-2) risk category, number of ventricles, neonatal status at surgery, heart transplant status, and comorbidities.

Cohort characteristics and ND outcomes

There were 1,293,585 children with a birth hospitalization from 2016 to 2020 recorded in the database, 0.24% of whom had a RACHS-2 qualifying procedure within 1 year after birth and were included in the final analysis. The median follow-up period for these participants was 2.5 years.

A code for a neurodevelopmental, behavioral, or neurologic disorder was reported in 63.3% of the cohort within 5 years of the index surgery. Additionally, 40.6% presented with at least 1 neurodevelopmental diagnosis code. These included communication disorders in 25.1%, motor disorders in 18.6%, and global developmental delays in 15.3%.

Additionally, 21.4% of patients presented with a behavioral diagnosis code, with mental health symptoms reported in 8% and substance-related disorders in 5.3%. Neurologic disorders were common, with an overall rate of 42.8%.

Additional diagnoses included:

• Feeding and related disorders in 3.9%
• Trauma- and stress-related disorders in 3.1%
• Anxiety disorders in 2.3%
• Obsessive compulsive and related disorders in 0.6%
• Depressive disorders in 0.3%

Patterns of neurodevelopmental service utilization

ND service utilization rates were also reported. This included a developmental screening completed by 55.7% of patients and a brief emotional-behavioral assessment completed by 6.6%. Neuropsychological testing was reported in 6.6% and developmental test administration in 3.2%.

Patients were more likely to be seen by other specialists vs a qualified developmental or behavioral specialist, with 47.6% seen by an occupational or physical therapist, 76.5% by a speech and language therapists, and 41.3% by an audiologist. Related ND services were provided to 6%.

Overall, these results indicated significant rates of ND diagnoses and service utilization in insured children with CHD who received infant heart surgery. Investigators noted that few children received formal evaluation based on American Heart Association and American Academy of Pediatrics recommendations.

“Future studies should develop and test improved methods to implement recommended neurodevelopmental and behavioral assessment in high-risk children with CHD,” wrote investigators.

References

1. O’Meara D, Henson B, Rollins CK, et al. Neurodevelopment among publicly insured children in the first 5 years after infant heart surgery. JAMA Netw Open. 2026;9(2):e2556832. doi:10.1001/jamanetworkopen.2025.56832
2. Sood E, Newburger JW, Anixt JS, et al. Neurodevelopmental outcomes for individuals with congenital heart disease: updates in neuroprotection, risk-stratification, evaluation, and management: a scientific statement from the American Heart Association.Circulation. 2024;149(13):e997-e1022. doi:10.1161/CIR.0000000000001211