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Neurodevelopmental evaluation for school-age children with congenital heart disease: recommendations from the cardiac neurodevelopmental outcome collaborative

Part of: Hypoplastic Left Heart Syndrome (HLHS) Surgery

Published online by Cambridge University Press:  04 November 2020

Dawn Ilardi Open the ORCID record for Dawn Ilardi [Opens in a new window] ,
Jacqueline H. Sanz ,
Adam R. Cassidy ,
Renee Sananes ,
Caitlin K. Rollins ,
Catherine Ullman Shade ,
Gretchen Carroll  and
David C. Bellinger
Dawn Ilardi*
Affiliation:
Children’s Healthcare of Atlanta, Department of Neuropsychology and Emory University, Department of Rehabilitation Medicine, Atlanta, Georgia, USA
Jacqueline H. Sanz
Affiliation:
Children’s National Health System, Division of Neuropsychology and George Washington University School of Medicine, Departments of Psychiatry and Behavioural Sciences and Paediatrics, Washington, DC, USA
Adam R. Cassidy
Affiliation:
Department of Psychiatry, Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA
Renee Sananes
Affiliation:
Labatt Family Heart Centre, Hospital for Sick Children and University of Toronto, Department of Paediatrics, Toronto, Canada
Caitlin K. Rollins
Affiliation:
Department of Neurology, Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA
Catherine Ullman Shade
Affiliation:
Department of Cardiology, Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA
Gretchen Carroll
Affiliation:
Cincinnati Children’s Hospital Medical Center, Heart Institute, Cincinnati, OH, USA
David C. Bellinger
Affiliation:
Department of Psychiatry, Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA Department of Neurology, Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA
*
Author for correspondence: D. Ilardi, PhD, Children’s Healthcare of Atlanta, Department of Neuropsychology, 1400 Tullie Rd, Atlanta, GA 30329, USA. Tel: +(404) 785–5894; Fax: +(404) 785–0978. E-mail: [email protected]
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Abstract

In 2012, the American Heart Association and the American Academy of Paediatrics released a scientific statement with guidelines for the evaluation and management of the neurodevelopmental needs of children with CHD. Decades of outcome research now highlight a range of cognitive, learning, motor, and psychosocial vulnerabilities affecting individuals with CHD across the lifespan. The number of institutions with Cardiac Neurodevelopmental Follow-Up Programmes and services for CHD is growing worldwide. This manuscript provides an expanded set of neurodevelopmental evaluation strategies and considerations for professionals working with school-age children with CHD. Recommendations begin with the referral process and access to the evaluation, the importance of considering medical risk factors (e.g., genetic disorders, neuroimaging), and the initial clinical interview with the family. The neurodevelopmental evaluation should take into account both family and patient factors, including the child/family’s primary language, country of origin, and other cultural factors, as well as critical stages in development that place the child at higher risk. Domains of assessment are reviewed with emphasis on target areas in need of evaluation based on current outcome research with CHD. Finally, current recommendations are made for assessment batteries using a brief core battery and an extended comprehensive clinical battery. Consistent use of a recommended assessment battery will increase opportunities for research collaborations, and ultimately help improve the quality of care for families and children with CHD.

Keywords

Congenital heart diseaseneurodevelopmentalneuropsychologicaldevelopmentalevaluationassesment
Type
Original Article
Information
Cardiology in the Young , Volume 30 , Issue 11 , November 2020 , pp. 1623 - 1636
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Copyright
© The Author(s), 2020. Published by Cambridge University Press

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