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Characterisation of neurodevelopmental and psychological outcomes in CHD: a research agenda and recommendations from the cardiac neurodevelopmental outcome collaborative

Published online by Cambridge University Press:  04 June 2021

Jacqueline H. Sanz*
Division of Neuropsychology, Children’s National Hospital, Departments of Psychiatry and Behavioral Sciences & Pediatrics, George Washington University School of Medicine, Washington, DC, USA
Julia Anixt
Division of Developmental and Behavioral Pediatrics, Cincinnati Children’s Hospital Medical Center and Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA
Laurel Bear
Department of Pediatrics, Medical College of Wisconsin, Herma Heart Institute, Children’s Wisconsin, Milwaukee, Wisconsin, USA
Amy Basken
Conquering CHD, Madison, Wisconsin, USA
John Beca
Department of Intensive Care, Starship Children’s Health, Auckland, New Zealand
Bradley S. Marino
Department of Pediatric Cardiology, Cleveland Clinic Children’s Hospital, Cleveland, Ohio, USA
Kathleen A. Mussatto
School of Nursing, Milwaukee School of Engineering, Milwaukee, Wisconsin, USA
Wendy N. Nembhard
Department of Epidemiology and the Arkansas Birth Defects Center for Research and Prevention, Fay W Boozman College of Public Health, University of Arkansas for Medical Sciences, Little Rock, Arkansas, USA
Anjali Sadhwani
Department of Psychiatry, Boston Children’s Hospital & Department of Psychiatry, Harvard Medical School, Boston, Massachusetts, USA
Renee Sananes
Division of Cardiology, Department of Psychology, The Hospital for Sick Children, Department of Pediatrics, The University of Toronto, Toronto, Canada
Lara S. Shekerdemian
Department of Pediatrics, Section of Critical Care, Baylor College of Medicine, Houston, TX, USA
Erica Sood
Nemours Cardiac Center, Alfred I. duPont Hospital for Children, Wilmington, DE & Department of Pediatrics, Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, Pennsylvania, USA
Karen Uzark
Department of Pediatrics, Section of Pediatric Cardiology, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, USA
Elizabeth Willen
Division of Developmental and Behavioral Sciences and the Ward Family Heart Center, Children’s Mercy, Kansas City, University of Missouri-Kansas City School of Medicine, Kansas City, Missouri, USA
Dawn Ilardi
Department of Neuropsychology, Children’s Healthcare of Atlanta, Emory University, Atlanta, GA, USA
Author for correspondence: Jacqueline H. Sanz, Ph.D., ABPP-CN, Department of Neuropsychology, Children’s National Hospital, 111 Michigan Avenue NW, Washington, DC20010, USA. Tel: 202-476-5000. E-mail:


The Neurodevelopmental and Psychological Outcomes Working Group of the Cardiac Neurodevelopmental Outcome Collaborative was formed in 2018 through support from an R13 grant from the National Heart, Lung, and Blood Institute with the goals of identifying knowledge gaps regarding the neurodevelopmental and psychological outcomes of individuals with CHD and investigations needed to advance science, policy, clinical care, and patient/family outcomes. Accurate characterisation of neurodevelopmental and psychological outcomes in children with CHD will drive improvements in patient and family outcomes through targeted intervention. Decades of research have produced a generalised perspective about neurodevelopmental and psychological outcomes in this heterogeneous population. Future investigations need to shift towards improving methods, measurement, and analyses of outcomes to better inform early identification, prevention, and intervention. Improved definition of underlying developmental, neuropsychological, and social-emotional constructs is needed, with an emphasis on symptom networks and dimensions. Identification of clinically meaningful outcomes that are most important to key stakeholders, including patients, families, schools and providers, is essential, specifically how and which neurodevelopmental differences across the developmental trajectory impact stakeholders. A better understanding of the discontinuity and patterns of neurodevelopment across the lifespan is critical as well, with some areas being more impactful at some ages than others. Finally, the field needs to account for the impact of race/ethnicity, socio-economic status, cultural and linguistic diversity on our measurement, interpretation of data, and approach to intervention and how to improve generalisability to the larger worldwide population of patients and families living with CHD.

© The Author(s), 2021. Published by Cambridge University Press

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