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Neurodevelopmental and psychosocial interventions for individuals with CHD: a research agenda and recommendations from the Cardiac Neurodevelopmental Outcome Collaborative

Published online by Cambridge University Press:  04 June 2021

Adam R Cassidy ,
Samantha C Butler Open the ORCID record for Samantha C Butler [Opens in a new window] ,
Jennie Briend ,
Johanna Calderon ,
Frank Casey ,
Lori E Crosby ,
Jennifer Fogel ,
Naomi Gauthier Open the ORCID record for Naomi Gauthier [Opens in a new window] ,
Carol Raimondi  and
Bradley S Marino
...Show all authors
Adam R Cassidy*
Affiliation:
Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Samantha C Butler
Affiliation:
Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Jennie Briend
Affiliation:
Sisters by Heart, El Segundo, CA, USA
Johanna Calderon
Affiliation:
Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Frank Casey
Affiliation:
Paediatric Cardiology Belfast Trust, Royal Belfast Hospital for Sick Children, Belfast, Northern Ireland
Lori E Crosby
Affiliation:
Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH, USA
Jennifer Fogel
Affiliation:
Advocate Children’s Hospital, Oak Lawn, IL, USA
Naomi Gauthier
Affiliation:
Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Carol Raimondi
Affiliation:
Conquering CHD, Madison, WI, USA
Bradley S Marino
Affiliation:
Department of Pediatric Cardiology, Cleveland Clinic Children’s Hospital, Cleveland, OH, USA
Erica Sood
Affiliation:
Nemours Cardiac Center & Nemours Center for Healthcare Delivery Science, Alfred I. duPont Hospital for Children, Wilmington, Delaware, USA; Department of Pediatrics, Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, PA, USA
Jennifer L Butcher
Affiliation:
C. S. Mott Children’s Hospital, Michigan Medicine, Ann Arbor, MI, USA
*
Author for correspondence: Adam R. Cassidy, Department of Psychiatry and Psychology, Mayo Clinic, Rochester, Minnesota, USA. Tel: +1 507-284-2649; Fax: +1 507-284-4158. E-mail: Cassidy.Adam@mayo.edu
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Abstract

In 2018, the Neurodevelopmental and Psychosocial Interventions Working Group of the Cardiac Neurodevelopmental Outcome Collaborative convened through support from an R13 grant from the National Heart, Lung, and Blood Institute to survey the state of neurodevelopmental and psychosocial intervention research in CHD and to propose a slate of critical questions and investigations required to improve outcomes for this growing population of survivors and their families. Prior research, although limited, suggests that individualised developmental care interventions delivered early in life are beneficial for improving a range of outcomes including feeding, motor and cognitive development, and physiological regulation. Interventions to address self-regulatory, cognitive, and social-emotional challenges have shown promise in other medical populations, yet their applicability and effectiveness for use in individuals with CHD have not been examined. To move this field of research forward, we must strive to better understand the impact of neurodevelopmental and psychosocial intervention within the CHD population including adapting existing interventions for individuals with CHD. We must examine the ways in which dedicated cardiac neurodevelopmental follow-up programmes bolster resilience and support children and families through the myriad transitions inherent to the experience of living with CHD. And, we must ensure that interventions are person-/family-centred, inclusive of individuals from diverse cultural backgrounds as well as those with genetic/medical comorbidities, and proactive in their efforts to include individuals who are at highest risk but who may be traditionally less likely to participate in intervention trials.

Keywords

CHDdevelopmental careinterventionneurodevelopmental outcomespsychosocial outcomes
Type
Review
Information
Cardiology in the Young , Volume 31 , Issue 6 , June 2021 , pp. 888 - 899
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Copyright
© The Author(s), 2021. Published by Cambridge University Press

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Footnotes

Adam R. Cassidy is now at the Mayo Clinic, Rochester, MN, USA.

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