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Author Notes:

Jacqueline H. Sanz, Ph.D., ABPP-CN, Department of Neuropsychology, Children’s National Hospital, 111 Michigan Avenue NW, Washington, DC 20010, USA. Tel: 202-476-5000. Email: jsanz@childrensnational.org

The members of the Neurodevelopmental and Psychological Outcomes Working Group would like to thank Adam Cassidy, Jennifer Butcher, Cheryl Brosig, Gil Wernovsky, and the Publications Committee of the Cardiac Neurodevelopmental Outcome Collaborative for their thoughtful review of this manuscript.

Disclosures: None

Subjects:

Research Funding:

This work was supported by the National Heart, Lung, and Blood Institute (grant number 1R13HL142298-01).

Keywords:

  • Science & Technology
  • Life Sciences & Biomedicine
  • Cardiac & Cardiovascular Systems
  • Pediatrics
  • Cardiovascular System & Cardiology
  • Neurodevelopmental outcomes
  • psychological outcomes
  • CHD
  • parents and stakeholders
  • CONGENITAL HEART-DISEASE
  • HYPOTHERMIC CIRCULATORY ARREST
  • DOMAIN CRITERIA RDOC
  • NEUROPSYCHOLOGICAL ASSESSMENT
  • D-TRANSPOSITION
  • GREAT-ARTERIES
  • PSYCHIATRIC-DISORDERS
  • COGNITIVE-DEVELOPMENT
  • DEXTRO-TRANSPOSITION
  • ACADEMIC-ACHIEVEMENT

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

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Journal Title:

CARDIOLOGY IN THE YOUNG

Volume:

Volume 31, Number 6

Publisher:

, Pages 876-887

Type of Work:

Article | Post-print: After Peer Review

Abstract:

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.

Copyright information:

This is an Open Access work distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (https://creativecommons.org/licenses/by-nc-nd/4.0/rdf).
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