Neurodevelopmental and psychosocial interventions for individuals with congenital heart disease: A research agenda and recommendations from the Cardiac Neurodevelopmental Outcome Collaborative

• Published in: Cardiology in the young Vol. 31; no. 6; pp. 888 - 899
• Main Authors: Cassidy, Adam R., Butler, Samantha C., Briend, Jennie, Calderon, Johanna, Casey, Frank, Crosby, Lori E., Fogel, Jennifer, Gauthier, Naomi, Raimondi, Carol, Marino, Bradley S., Sood, Erica, Butcher, Jennifer L.
• Format: Journal Article
• Language: English
• Published: 01.06.2021
• ISSN: 1047-9511; 1467-1107
• DOI: 10.1017/S1047951121002158

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 congenital heart disease 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 individualized 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 congenital heart disease 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 congenital heart disease population including adapting existing interventions for individuals with congenital heart disease. We must examine the ways in which dedicated cardiac neurodevelopmental follow-up programs bolster resilience and support children and families through the myriad transitions inherent to the experience of living with congenital heart disease. And we must ensure that interventions are person-/family-centered, 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.