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Science Advisory: Advocating for Developmental Care for Infants With Complex Congenital Heart Disease

Developmental disorders, disabilities, and delays are common outcomes for infants with complex congenital heart disease. Targeting early factors influencing these conditions after birth and during neonatal hospitalization for cardiac surgery remains a critical need. However, significant gaps remain in understanding the best practices to improve neurodevelopmental and psychosocial outcomes for these infants.

January 26, 2023

The Journal of the American Heart Association has published a science advisory that highlights critical gaps in research aimed at evaluating developmental care interventions to improve neurodevelopmental outcomes in complex congenital heart disease. It also describes the burden of developmental disorders and disabilities for infants with complex congenital heart disease and describes developmental care’s potential health and neurodevelopmental benefits.

“Developing early interventions to promote brain maturation, mitigate risk factors, and change the trajectory of neurodevelopment are now urgent research priorities,” explains the advisory’s lead author, Amy Jo Lisanti, PhD, RN, CCNS, Research Assistant Professor at the University of Pennsylvania School of Nursing and a member of the research faculty at Children’s Hospital of Philadelphia’s Research Institute.

This advisory calls upon research scientists, clinicians, policymakers, government agencies, advocacy groups, and health care organization leadership to support funding and hospital-based infrastructure for developmental care in the complex congenital heart disease population. “Prioritization of research on and implementation of developmental care interventions in this population should be a major focus in the next decade,” says Lisanti.

The advisory, “Developmental Care for Hospitalized Infants With Complex Congenital Heart Disease: A Science Advisory From the American Heart Association,” is available online. Co-authors of the article include Karen C. Uzark of the University of Michigan Women’s Hospital; Tondi M. Harrison of the Ohio State University; Jennifer K. Peterson of Johns Hopkins University School of Nursing; Samantha C. Butler of Boston Children’s Hospital; Thomas A. Miller of the Maine Medical Center; Kiona Y. Allen of Lurie Children’s Hospital; Steven P. Miller of the of BC Children’s Hospital and University of British Columbia; and Courtney E. Jones of Primary Children’s Hospital.

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