Improving Neurodevelopmental Outcomes in Children with Congenital Heart Disease: An Intervention Study

Abstract

Each year, approximately one child in every hundred is born with Congenital Heart Disease (CHD), making it the most common birth defect. With recent advances in medical management, more and more children with the most severe types of CHD survive early open-heart surgery, so that there are now between 2 and 3 million adult survivors with CHD. These survivors, however, face challenges in terms of their cognitive and behavioral development. For many, the limitations affect their academic achievement, social adaption and, ultimately, their quality of life and that of their families. Among the most disabling limitations are those that pertain to the ability to maintain attention, plan and organize activities, regulate emotions, and develop problem-solving strategies. Collectively, these are referred to as "executive functions" because they are higher-order abilities that enable one to coordinate complex behaviors. In addition to affecting academic potential, impaired executive functions also underlie mental health disorders such as Attention Deficit Hyperactivity Disorder (ADHD). In spite of the abundance of evidence that children with CHD struggle with executive functioning, there is little to offer them in the way of evidence-based interventions to prevent or mitigate these problems. We propose to conduct the first randomized trial to evaluate the efficacy of an intervention, the Cogmed Working Memory Program, in improving the neurodevelopmental outcomes of children with critical CHD after infant open-heart surgery. Children who meet eligibility criteria and who agree to participate in the trial will be randomly assigned to an intervention or control group. Children in the intervention group will complete 25 35-40 minute sessions of Cogmed training, spread over for 5 weeks. This program is a set of home-based, child-friendly, computerized activities. The control group will receive the standard of neurodevelopmental care for children with CHD, which consists of surveillance and evaluation as needed. Children s scores on executive function and related neurodevelopmental tests will be evaluated before the intervention group completes Cogmed training, at the conclusion of their training, and 3 months later. The latter assessment will indicate whether any gains in executive function skills of the children in the intervention group are sustained after training. Parents and teachers will also complete questionnaires about children s executive functioning, attention, and social behaviors to determine whether training affects behaviors of the intervention group at home and in school. We will also identify the medical and surgical characteristics of children who children benefit most from Cogmed training. This information will be helpful in targeting the intervention most efficiently in the future. If this trial indicates that executive function training is beneficial to children with CHD, we will conduct additional trials to define the optimal intensity and duration of training and to explore the extent to which the training improves other aspects of children s functioning, including social adaptability and mental health.

Document Details

Document Type
DoD Grant Award
Publication Date
Jan 31, 2017
Source ID
W81XWH1610741

Entities

People

  • Jane W. Newburger

Organizations

  • United States Army

Tags

Fields of Study

  • Education

Readers

  • Child and Adolescent Substance Abuse Science in Autism Spectrum Disorders.
  • Molecular and Cellular Biology
  • Psychological Intervention/Treatment for Stress, Anxiety, PTSD, and Related Emotional and Cognitive Health Symptoms.