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The origins and development of the Cardiac Neurodevelopmental Outcome Collaborative: creating innovative clinical, quality improvement, and research opportunities

Part of: Surgery Hypoplastic Left Heart Syndrome (HLHS)

Published online by Cambridge University Press:  03 December 2020

Bradley S. Marino ,
Erica Sood ,
Adam R. Cassidy ,
Thomas A. Miller ,
Jacqueline H. Sanz ,
David Bellinger ,
Jane Newburger  and
Caren S. Goldberg
Bradley S. Marino*
Affiliation:
Department of Pediatrics, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA
Erica Sood
Affiliation:
Nemours Cardiac Center, Alfred I. duPont Hospital for Children, Wilmington, DE, USA Department of Pediatrics, Thomas Jefferson University, Philadelphia, PA, USA
Adam R. Cassidy
Affiliation:
Department of Psychiatry, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Thomas A. Miller
Affiliation:
Department of Pediatrics, Maine Medical Center, Portland, ME, USA
Jacqueline H. Sanz
Affiliation:
Division of Neuropsychology, Children’s National Hospital, Departments of Psychiatry and Behavioral Sciences & Pediatrics, George Washington University School of Medicine, Washington, DC, USA
David Bellinger
Affiliation:
Department of Psychiatry, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA Department of Neurology, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Jane Newburger
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Caren S. Goldberg
Affiliation:
Department of Pediatrics, University of Michigan, C.S. Mott Childrens Hospital, Ann Arbor, MI, USA
*
Author for correspondence: Bradley S. Marino, MD, MPP, MSCE, Professor Pediatrics, Department of Pediatrics, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children’s Hospital of Chicago, Division of Cardiology, 225 East Chicago Avenue, Box 21, Chicago, IL 60611-2991, USA. Tel: +1 312 227 4373; Fax: 312-227-9640. E-mail: bradley.marino@northwestern.edu
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Abstract

Compared to the general population, individuals with complex congenital heart disease are at increased risk for deficits in cognitive, neurodevelopmental, psychosocial, and physical functioning, resulting in a diminished health-related quality of life. These deficits have been well described over the past 25 years, but significant gaps remain in our understanding of the best practices to improve neurodevelopmental and psychosocial outcomes and health-related quality of life for individuals with paediatric and congenital heart disease. Innovative clinical, quality improvement, and research opportunities with collaboration across multiple disciplines and institutions were needed to address these gaps. The Cardiac Neurodevelopmental Outcome Collaborative was founded in 2016 with a described mission to determine and implement best practices of neurodevelopmental and psychosocial services for individuals and their families with paediatric and congenital heart disease through clinical, quality improvement, and research initiatives. The vision is to be a multi-centre, multi-national, multi-disciplinary group of healthcare professionals committed to working together and partnering with families to optimise neurodevelopmental outcomes for individuals with paediatric and congenital heart disease through clinical, quality, and research initiatives, intending to maximise quality of life for every individual across the lifespan. This manuscript describes the development and organisation of the Cardiac Neurodevelopmental Outcome Collaborative.

Keywords

Congenital heart diseaseneurodevelopmental outcomespsychosocial outcomesquality of lifequality improvement
Type
Original Article
Information
Cardiology in the Young , Volume 30 , Issue 11 , November 2020 , pp. 1597 - 1602
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Copyright
© The Author(s), 2020. Published by Cambridge University Press

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