Neurodevelopmental Outcomes in Children With Congenital Heart Disease: Evaluation and Management

Abstract

Background— The goal of this statement was to review the available literature on surveillance, screening, evaluation, and management strategies and put forward a scientific statement that would comprehensively review the literature and create recommendations to optimize neurodevelopmental outcome in the pediatric congenital heart disease (CHD) population. Methods and Results— A writing group appointed by the American Heart Association and American Academy of Pediatrics reviewed the available literature addressing developmental disorder and disability and developmental delay in the CHD population, with specific attention given to surveillance, screening, evaluation, and management strategies. MEDLINE and Google Scholar database searches from 1966 to 2011 were performed for English-language articles cross-referencing CHD with pertinent search terms. The reference lists of identified articles were also searched. The American College of Cardiology/American Heart Association classification of recommendations and levels of evidence for practice guidelines were used. A management algorithm was devised that stratified children with CHD on the basis of established risk factors. For those deemed to be at high risk for developmental disorder or disabilities or for developmental delay, formal, periodic developmental and medical evaluations are recommended. A CHD algorithm for surveillance, screening, evaluation, reevaluation, and management of developmental disorder or disability has been constructed to serve as a supplement to the 2006 American Academy of Pediatrics statement on developmental surveillance and screening. The proposed algorithm is designed to be carried out within the context of the medical home. This scientific statement is meant for medical providers within the medical home who care for patients with CHD. Conclusions— Children with CHD are at increased risk of developmental disorder or disabilities or developmental delay. Periodic developmental surveillance, screening, evaluation, and reevaluation throughout childhood may enhance identification of significant deficits, allowing for appropriate therapies and education to enhance later academic, behavioral, psychosocial, and adaptive functioning.

Multidisciplinary family-centred psychosocial care for patients with CHD: consensus recommendations from the AEPC Psychosocial Working Group

“…[2][3][4] Moreover, research showed that, despite evident improvements in the treatment of CHD over the past decades, no clear improvement was made as to behavioural and emotional problems of these children and their parents. 5 In 2012, the American Heart Association recommended 4 screening and identification of children at risk for developmental disorders and neuropsychological, emotional, and social problems, in order to provide them with adequate services and prevent the development of additional problems. This statement consists of a "state of the art" review, based on an extensive literature review, and it describes how to implement screening, surveillance, and monitoring in these children.…”

“…For the specific questionnaires to be administered, we refer to the review by Marino et al 4 The questionnaires specified there address the following topics:…”

Predictors of Postoperative Rehabilitation Therapy Following Congenital Heart Surgery

“…While several studies have explored late neurodevelopmental outcomes2, 3, 4, 5 and exercise training on older patients with CHD after surgery,10, 11, 12, 13, 14, 15 little has been published on the acute impact on functional status following CHD surgery, and the associated RT use in the immediate postoperative period.…”

“…There is a growing body of research on long‐term functional impairment following surgery in patients with CHD, particularly in neurodevelopment2, 3, 4, 5 and exercise capacity 6, 7. However, little is known about the acute impact of cardiac surgery on the immediate postoperative functional status and resultant rehabilitation use.…”

Extra-cardiac manifestations of adult congenital heart disease

“…The prevalence of neurologic abnormalities among school-age CHD patients ranges from 20% in total anomalous pulmonary venous connection and isolated atrioventricular septal defects, to as high as 70% in TGA and hypoplastic left heart syndrome [21]. In general, the prevalence and severity of neurodevelopmental impairment increase with lesion complexity [22]. Acquired brain injury has been associated with cardiopulmonary bypass and circulatory arrest during CHD surgery [20].…”