Top Things to Know: Neurodevelopmental Outcomes for Individuals with Congenital Heart Disease, Revisited: Neuroprotection, Risk-Stratification, Evaluation, and Management
Published: February 22, 2024
- Congenital heart disease (CHD) is the most common birth defect, with an estimated prevalence of 9 per 1000 births worldwide. Approximately 25% of individuals with CHD require surgical or catheter-based intervention during infancy.
- Neurodevelopmental deficits, such as impairments in motor, and cognitive skills, rank among the most common and enduring complications faced by individuals with CHD, with long-term impacts on social functioning, educational attainment, economic self-sufficiency, and health-related quality of life.
- In 2012, the American Heart Association published a scientific statement on the evaluation and management of neurodevelopmental outcomes in children with CHD, containing the first-ever guidance for healthcare professionals to optimize neurodevelopmental outcomes for this high-risk patient population.
- Since 2012, new research has improved our understanding of neurodevelopmental trajectories across the lifespan and factors that increase neurodevelopmental risk. Additionally, research has identified promising neuroprotective strategies with the potential to prevent brain injury and modify trajectories, and interventions that may begin to address neurodevelopmental and neuropsychological issues throughout the lifespan.
- This scientific statement updates the 2012 scientific statement and reflects the dramatic expansion of knowledge over the last decade.
- This scientific statement describes 1) a revised algorithm for risk stratification of individuals with CHD into high or low risk for developmental delay or disorder; 2) sequential risk categories for developmental delay or disorder; and 3) an updated list of factors that increase neurodevelopmental risk, including fetal and perinatal factors, social and family factors, and factors related to growth and development.
- The statement includes updated information about the age-based evaluation of individuals with CHD at high risk for developmental delay or disorder and the management of neurodevelopmental deficits in infancy, childhood, adolescence, and adulthood. Additionally, a revised algorithm for referral, evaluation, and management of high-risk individuals is also included.
- Also highlighted are new sections on emerging risk factors and promising neuroprotective strategies for individuals with CHD.
- Risk stratification of individuals with CHD using the updated categories and risk factors will identify a growing population of survivors at high risk for developmental delay or disorder and associated impacts across the lifespan.
- Critical policy changes at the institutional, state, and federal levels are required to minimize barriers to accessing neurodevelopmental services and to ensure sufficient funds for cardiac neurodevelopmental research. Neurodevelopmental research and clinical care must be prioritized over the next decade to improve the neurodevelopmental outcomes and health-related quality of life of individuals with CHD across the lifespan.
Citation
Sood E, Newburger JW, Anixt JS, Cassidy AR, Jackson JL, Jonas RA, Lisanti AJ, Lopez KN, Peyvandi S, Marino BS; on behalf of the American Heart Association Council on Lifelong Congenital Heart Disease and Heart Health in the Young and the Council on Cardiovascular and Stroke Nursing. Neurodevelopmentaloutcomes for individuals with congenital heart disease, revisited: neuroprotection, riskstratification, evaluation, and management: a scientific statement from the American HeartAssociation. Circulation. Published online February 22, 2024. doi: 10.1161/CIR.0000000000001211