Neurodevelopmental evaluation for school-age children with congenital heart disease: recommendations from the cardiac neurodevelopmental outcome collaborative

Abstract

In 2012, the American Heart Association and the American Academy of Paediatrics released a scientific statement with guidelines for the evaluation and management of the neurodevelopmental needs of children with CHD. Decades of outcome research now highlight a range of cognitive, learning, motor, and psychosocial vulnerabilities affecting individuals with CHD across the lifespan. The number of institutions with Cardiac Neurodevelopmental Follow-Up Programmes and services for CHD is growing worldwide. This manuscript provides an expanded set of neurodevelopmental evaluation strategies and considerations for professionals working with school-age children with CHD. Recommendations begin with the referral process and access to the evaluation, the importance of considering medical risk factors (e.g., genetic disorders, neuroimaging), and the initial clinical interview with the family. The neurodevelopmental evaluation should take into account both family and patient factors, including the child/family’s primary language, country of origin, and other cultural factors, as well as critical stages in development that place the child at higher risk. Domains of assessment are reviewed with emphasis on target areas in need of evaluation based on current outcome research with CHD. Finally, current recommendations are made for assessment batteries using a brief core battery and an extended comprehensive clinical battery. Consistent use of a recommended assessment battery will increase opportunities for research collaborations, and ultimately help improve the quality of care for families and children with CHD.

Congenital heart disease in school-aged children: Cognition, education, and participation in leisure activities

“…A recommendation for such a framework has recently been published by Ilardi and colleagues. 43 Importantly, we confirmed the findings of previous studies 21,44-46 that SES is an important risk factor for lower IQ in children with CHD.…”

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…”

“…12,16,19,20 To promote early identification and intervention for these children, multiple professional groups (American Heart Association, American Academy of Pediatrics, Cardiac Neurodevelopmental Outcome Collaborative) have published guidelines recommending youth with high-risk CHD be systematically screened and evaluated at periodic time points (i.e., 9 months, 18 months, 24-30 months, 3.5-5 years, 11-12 years). [21][22][23] These scientific statements also have attempted to facilitate guidance in age-specific assessment tools to consider when evaluating children and adolescents with CHD, though this has not been standardised or consistently adopted across cardiac clinics. 24 In an effort to ensure children with CHD receive neurodevelopmental interventional services, some cardiology clinics have created clinics with a focus on monitoring the neurodevelopment of cardiac patients at high-risk for impairments.…”

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…”