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

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.

Fetal brain biometry and cortical development in congenital heart disease: A prospective cross sectional study

“…Despite future studies are required to confirm the validity of fetal cortical assessment as predictor of neurodevelopmental delay in children with CHD, our findings suggest that these brain changes provide the possibility of a risk stratification and may be used as an entry criterion in intervention trials of fetal neuroprotection 24,25 . Further after birth the knowledge of these findings may be clinically relevant for organizing specific rehabilitation strategies that may improve the long term neurological outcome in these subjects 26–28 …”

“…24,25 Further after birth the knowledge of these findings may be clinically relevant for organizing specific rehabilitation strategies that may improve the long term neurological outcome in these subjects. [26][27][28]…”

Development and Validation of a Paralimbic Related Subcortical Brain Dysmaturation MRI Score in Infants with Congenital Heart Disease

“…[111][112][113][114][115] Additionally, neurodevelopmental impairments can continue to affect individuals well past infancy and into adolescence and early adulthood. [116][117][118][119][120][121] There are two main hypotheses with regard to the origin of injury to the brain and subsequent neurodevelopmental deficits that arise from the injury; intrinsic patient factors including genetics or altered substrate delivery due to the cardiac malformation. There have been studies looking at the heritability of CHD to determine the genetic causes which resulted in the finding that CHD most likely has a genetic component.…”

Psychological functioning in paediatric patients with single ventricle heart disease: a systematic review

“…The research gap regarding psychological outcomes in the paediatric single ventricle heart disease population has been identified as a priority for exploration. 12,13 Given the known association between poor psychological health and cardiovascular risk in adult patients, 14 better characterisation of psychological functioning and outcomes in the paediatric single ventricle heart disease population is of utmost importance.…”