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Neurodevelopmental evaluation strategies for children with congenital heart disease aged birth through 5 years: recommendations from the cardiac neurodevelopmental outcome collaborative

Published online by Cambridge University Press:  04 November 2020

Janice Ware*
Affiliation:
Departments of Medicine and Psychiatry, Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA
Jennifer L. Butcher
Affiliation:
Department of Pediatrics, C.S. Mott Children’s Hospital, University of Michigan School of Medicine, Ann Arbor, MI, USA
Beatrice Latal
Affiliation:
Child Development Center, University Children’s Hospital, Zürich, Switzerland Department of Pediatrics, University of Zurich, Zürich, Switzerland
Anjali Sadhwani
Affiliation:
Department of Psychiatry, Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA
Caitlin K. Rollins
Affiliation:
Department of Neurology, Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA
Cheryl L. Brosig Soto
Affiliation:
Herma Heart Institute, Children’s Wisconsin and Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA
Samantha C. Butler
Affiliation:
Department of Psychiatry, Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA
Patricia B. Eiler-Sims
Affiliation:
Department of Developmental and Behavioral Pediatrics, Cincinnati Children’s, Cincinnati, OH, USA
Catherine V. Ullman Shade
Affiliation:
Department of Cardiology, Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA
Gil Wernovsky
Affiliation:
Department of Cardiology, Children’s National Hospital, Washington, DC, USA Department of Critical Care, Children’s National Hospital, Washington, DC, USA Department of Pediatrics, George Washington University School of Medicine and Health Sciences, Washington, DC, USA
*
Author for correspondence: Janice Ware, PhD, Boston Children’s Hospital, Developmental Medicine Center, 300 Longwood Avenue, Boston, MA 02115, USA. Tel: +1 617 919 1804; Fax: 1-617-730-0252. E-mail: janice.ware@childrens.harvard.edu

Abstract

This paper provides specific guidelines for the neurodevelopmental evaluation of children aged birth through 5 years with complex congenital heart disease. There is wide recognition that children with congenital heart disease are at high risk for neurodevelopmental impairments that are first apparent in infancy and often persist as children mature. Impairments among children with complex congenital heart disease cross developmental domains and affect multiple functional abilities. The guidelines provided are derived from the substantial body of research generated over the past 30 years describing the characteristic developmental profiles and the long-term trajectories of children surviving with complex congenital heart conditions. The content and the timing of the guidelines are consistent with the 2012 American Heart Association and the American Academy of Pediatrics scientific statement documenting the need for ongoing developmental monitoring and assessment from infancy through adolescence. The specific guidelines offered in this article were developed by a multidisciplinary clinical research team affiliated with the Cardiac Neurodevelopmental Outcome Collaborative, a not-for-profit organisation established to determine and implement best neurodevelopmental practices for children with congenital heart disease. The guidelines are designed for use in clinical and research applications and offer an abbreviated core protocol and an extended version that expands the scope of the evaluation. The guidelines emphasise the value of early risk identification, use of evidence-based assessment instruments, consideration of family and cultural preferences, and the importance of providing multidimensional community-based services to remediate risk.

Type
Original Article
Copyright
© The Author(s), 2020. Published by Cambridge University Press

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