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

• Authors: Jacqueline H Sanz, George Washington University; Julia Anixt, University of Cincinnati; Laurel Bear, Medical College of Wisconsin; Amy Basken, Conquering CHD, Madison; John Beca, Starship Children’s Health, Auckland; Bradley S Marino, Cleveland Clinic Children’s Hospital; Kathleen A Mussatto, Milwaukee School of Engineering; WN Nembhard, University of Arkansas Medical Sciences; Anjali Sadhwani, Harvard Medical School; Renee Sananes, University of Toronto; Lara S Shekerdemian, Baylor College of Medicine; Erica Sood, Alfred I duPont Hosp Children; Karen Uzark, University of Michigan; Elizabeth Willen, University of Missouri-Kansas City School of Medicine; Dawn Ilardi, Emory University
• Journal Title: CARDIOLOGY IN THE YOUNG
• Volume: Volume 31, Number 6
• Publisher: CAMBRIDGE UNIV PRESS | 2021-06-01, Pages 876-887
• Type of Work: Article | Post-print: After Peer Review
• Publisher DOI: http://doi.org/10.1017/S1047951121002146
• Subjects: Health Sciences, Nursing; Health Sciences, Human Development; Psychology, Clinical
• 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

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.