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.
Bibliographical noteFunding Information:
This work was supported by the National Heart, Lung, and Blood Institute (grant number 1R13HL142298-01).
The Neurodevelopmental and Psychosocial Interventions Working Group of the Cardiac Neurodevelopmental Outcome Collaborative included content area experts in psychology and neuropsychology, cardiology, feeding and speech/language pathology, health disparities, and family support including a patient and a parent stakeholder (Table ). Working Group participants included members from the United States of America and Europe who convened in 2018 to address the following goals: 1) Describe the state of neurodevelopmental and psychosocial intervention research in CHD and 2) propose an intervention research agenda aimed at optimising the neurodevelopmental and psychosocial potential of individuals affected by CHD. The effort was supported by a National Heart, Lung, and Blood Institute R13 grant awarded to the Cardiac Neurodevelopmental Outcome Collaborative in collaboration with the Ann & Robert H. Lurie Children’s Hospital of Chicago, which funded a two-day meeting of multidisciplinary, multinational experts and patient/caregiver stakeholders in Kansas City, MO.
The November 2020 issue of Cardiology in the Young contains the inaugural five manuscripts from the Cardiac Neurodevelopmental Outcome Collaborative, 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, this article is part of the first set of three papers from the Cardiac Neurodevelopmental Outcome Collaborative R13 Grant funded by the National Heart, Lung, and Blood Institute of the National Institutes of Health of the United States of America, which defines the research agenda for the next decade across seven domains of cardiac neurodevelopmental and psychosocial outcomes research. - -
© The Author(s), 2021. Published by Cambridge University Press.
- Developmental care
- Neurodevelopmental outcomes
- Psychosocial outcomes