Optimising neurodevelopmental and psychosocial outcomes for survivors with CHD: a research agenda for the next decade.

Erica Sood,Jeffrey P Jacobs,Bradley S Marino

doi:10.1017/s1047951121002171

Abstract

Neurodevelopmental and psychosocial impairments negatively impact health-related quality of life for survivors with CHD and complicate the transition to independent adulthood. Risk for neurodevelopmental and psychosocial impairments is influenced by a complex interplay among genetic, foetal, surgical, perioperative, family, and social factors, requiring a multi-pronged approach to neuroprotection and intervention. To ensure future research can ultimately reduce the burden of CHD for individuals, families, and society, the most pressing issues in cardiac neurodevelopment requiring scientific investigation must be identified.Through funding from an R13 Grant from the National Heart, Lung, and Blood Institute of the National Institutes of Health of the United States of America, the Cardiac Neurodevelopmental Outcome Collaborative convened a two-day meeting of international experts in cardiac neurodevelopmental and psychosocial research, clinical care, and health disparities, including patient and family stakeholders, to define the cardiac neurodevelopmental and psychosocial outcomes research agenda for the next decade. Seven multidisciplinary working groups were formed to address key domains crucial to the advancement of cardiac neurodevelopmental and psychosocial outcomes research: 1) Foetal Brain Development and Neuroprotection, 2) Surgical/Perioperative Neuroprotection and Neurodevelopment, 3) Characterization of Neurodevelopmental and Psychological Outcomes, 4) Neurodevelopmental and Psychosocial Intervention, 5) Parent Mental Health and Family Functioning, 6) Neurodevelopmental Education, Outreach and Advocacy, and 7) Health Disparities and Neurodevelopmental Outcomes. Working groups identified significant gaps in knowledge and critical questions that must be answered to further knowledge, policy, care, and outcomes. The development of a research agenda in cardiac neurodevelopmental and psychosocial outcomes is critical for informing collaborative initiatives and allocation of funding for research to scientific inquiries of highest value to key stakeholders.

Highlights

The November 2020 issue of Cardiology in the Young contains the inaugural five manuscripts from the Cardiac Neurodevelopmental Outcome Collaborative[1,2,3,4,5], marking the beginning of the partnership between the Cardiac Neurodevelopmental Outcome Collaborative and Cardiology in the Young:
Miller DO and colleagues characterised the variation in structure and personnel across cardiac neurodevelopmental follow-up programmes within member institutions of the Cardiac Neurodevelopmental Outcome Collaborative and highlighted the need for more resources dedicated to school-age, adolescent, and young adult patients.[3]
Janice Ware, PhD and colleagues and Dawn Ilardi, PhD ABPP-CN and colleagues described strategies, considerations, and best practices for conducting the neurodevelopmental evaluation of individuals with CHD across the lifespan and provided specific recommendations for brief core assessment batteries and extended comprehensive assessment batteries, as defined by expert working groups comprised of multidisciplinary members of the Cardiac Neurodevelopmental Outcome Collaborative.[4,5]

Summary

Introduction

The November 2020 issue of Cardiology in the Young contains the inaugural five manuscripts from the Cardiac Neurodevelopmental Outcome Collaborative[1,2,3,4,5], marking the beginning of the partnership between the Cardiac Neurodevelopmental Outcome Collaborative and Cardiology in the Young:. In this issue of Cardiology in the Young, we are very pleased to publish the first set of three papers from the Cardiac Neurodevelopmental Outcome Collaborative R13 Grant funded by the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health (NIH) of the United States of America, which defines the research agenda for the decade

Results

Conclusion