Expanded and Updated Scientific Statement Sets a Path Towards the Future of Neurodevelopmental Care in Congenital Heart Disease

There have been remarkable improvements in care for children with congenital heart disease (CHD) over the last 40 years. This started with dramatic improvements in survival, which started in the 1980's and hit a peak in the 2010's.¹ As focus shifted from surviving to thriving, neurodevelopmental outcomes quickly became a focus of clinical care and research. In 2012, Dr. Marino led the publication of a landmark scientific statement, jointly endorsed by the American Heart Association and the American Academy of Pediatrics, establishing routine neurodevelopmental evaluation as standard of care for children with CHD.² This set into motion exponential growth in research on the topic, the establishment of more neurodevelopmental follow up programs nationwide, and the establishment of research and clinical care collaboratives to improve care, such as the Cardiac Neurodevelopmental Outcome Collaborative.^3,4

This rapid growth in available knowledge necessitates updating and expansion of the 2012 scientific statement. Dr. Sood, Dr. Marino, and colleagues have aptly translated the last decade of research into these revised and clearly actionable suggestions, which will undoubtedly serve as an important resource to a range of multidisciplinary providers. The statement also provides a clear conceptual framework that is needed to advance clinical research on risk stratification for neurodevelopmental consequences in CHD.

Following the last decade of research, the revised statement appropriately places increased focus on socioeconomic and psychological factors, which are now seen as primary and consistent contributors to neurodevelopmental outcomes in CHD. Importantly, there is also acknowledgement of risk as a fluid variable that can and does change over time. This highlights that risk for adverse outcomes needs to be continually assessed by those caring for individuals with CHD. Along these lines, neurodevelopmental outcomes in CHD are more clearly presented as a lifespan condition, which thus suggests a need for more adult providers across specialty care areas to care for our patients.

The revised statement also marks an important shift from identifying neurodevelopmental consequences towards active strategies for neuroprotection and therapeutic intervention, thus highlighting medical providers' roles in actively improving outcomes. This shift includes changes to medical care and intervention, but also highlights the importance of family centered care and therapeutic/ancillary care strategies that have been implemented successfully in centers nationwide.^5,6 Care coordination is also included as a critical component to improving outcomes and addressing health disparities. This more holistic approach to neurodevelopmental care is in line with seminal research over the past decade, and underscores the importance of placing patients, caregivers, and families at the center of care.

In addition to providing greater specificity with regards to key developmental timepoints and evaluation strategies, the revised statement introduces collaboration with community providers and services, such as early intervention programs and schools. There is also mention of telemedicine as a tool to reach families that struggle with barriers related to transportation, distance or scheduling. While these are important resources, as they may be a means for reducing health disparities related to access to care, the statement also emphasizes that evaluation by a qualified neurodevelopmental professional should be considered the ‘gold standard' of care. This is especially important, as community services are often reactive, not preventative, and thus have a higher threshold for access to services.

That said, this statement establishes the importance of early identification and intervention, and formal evaluation at the medical center as standard of care. Ongoing advocacy should take place to ensure payors acknowledge the importance of neurodevelopmental care and fund it appropriately, which will be a far more effective means of promoting equity and thus reducing health disparities. The intention and goal should be consistent access to both evaluation by specialists in the child's medical home and services in the community, in a manner that is collaborative and complimentary.

The revised statement provides an excellent overview of current research, as well as actionable guidance, for the gold standard of clinical care. As we look to the future of neurodevelopmental care in CHD, however, the statement also highlights several needs in the field. This includes expanding extant research on neuroprotection, developing effective strategies for neurodevelopmental and psychological interventions to improve outcomes, and addressing key variables that lead to substantial inequities and health disparities in access to needed care.