Neurodevelopmental evaluation strategies for children with congenital heart disease aged birth through 5 years: recommendations from the cardiac neurodevelopmental outcome collaborative

Abstract

This paper provides specific guidelines for the neurodevelopmental evaluation of children aged birth through 5 years with complex congenital heart disease. There is wide recognition that children with congenital heart disease are at high risk for neurodevelopmental impairments that are first apparent in infancy and often persist as children mature. Impairments among children with complex congenital heart disease cross developmental domains and affect multiple functional abilities. The guidelines provided are derived from the substantial body of research generated over the past 30 years describing the characteristic developmental profiles and the long-term trajectories of children surviving with complex congenital heart conditions. The content and the timing of the guidelines are consistent with the 2012 American Heart Association and the American Academy of Pediatrics scientific statement documenting the need for ongoing developmental monitoring and assessment from infancy through adolescence. The specific guidelines offered in this article were developed by a multidisciplinary clinical research team affiliated with the Cardiac Neurodevelopmental Outcome Collaborative, a not-for-profit organisation established to determine and implement best neurodevelopmental practices for children with congenital heart disease. The guidelines are designed for use in clinical and research applications and offer an abbreviated core protocol and an extended version that expands the scope of the evaluation. The guidelines emphasise the value of early risk identification, use of evidence-based assessment instruments, consideration of family and cultural preferences, and the importance of providing multidimensional community-based services to remediate risk.

Psychosocial, neurodevelopmental, and transition of care practices provided to children with CHD across North American cardiac clinics

“…22,23 This framework is very helpful for systematic, evidence-based batteries to be used to identify neurodevelopmental concerns for children with CHD; however, a barrier for programmes may be the need for qualified healthcare providers (e.g., typically developmental paediatricians, neuropsychologists, psychologists) to implement these protocols. 22,23 Cardiac clinics without infrastructure in place to conduct systematic neurodevelopmental assessments have a concrete framework to strive Cardiology in the Young 5…”

“…24 When developing funding proposal and seeking institutional support, cardiac clinics could reference the specific resources needed to administer the core assessment battery to guide and justify their request. 22,23 Additional research is needed to better understand methods for improving the institutional support to cardiac clinics striving to develop cardiac neurodevelopmental programmes and meet clinical recommendations. The American Heart Association recommends cardiac clinics establish paediatric to adult transition of care programmes that provide children with CHD the skills needed to manage their healthcare needs continuously and independently (e.g., diseaserelated knowledge, communication skills, decision making).…”

Telehealth services for cardiac neurodevelopmental care during the COVID-19 pandemic: a site survey from the Cardiac Neurodevelopmental Outcome Collaborative

“…of clinical test protocols for neurodevelopmental evaluation in an effort to improve quality of care and research collaborations across member sites and internationally. 3,4 Prior to the novel coronavirus disease 2019 (COVID-19) pandemic, multiple centres had identified barriers to recommended neurodevelopmental care for children with CHD resulting in significant health disparities, especially in terms of insurance status, family geographical location (e.g., urban, suburban, or rural), financial resources, and race and ethnicity. 5,6 More recently, the COVID-19 pandemic and associated restrictions regarding in-person clinical services have markedly impacted the ability to provide timely neurodevelopmental assessment and care in keeping with best practices for this vulnerable patient population.…”

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

“…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:…”

“…3 • Finally, 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 In this issue of Cardiology in the Young, we are very pleased to publish the first set of three…”