Population-based Surveillance of Outcomes, Needs, and Well-being of Children and Adolescents with Congenital Heart Defects

as well as needs and experiences of the caregivers.  Background Congenital heart defects (CHDs) are the most common type of structural birth defects affecting approximately 1 in 110 live-born children.  Based on advances in survival, there are approximately 1 million children with a CHD in the United States. With vast declines in mortality from pediatric heart disease over the past 30 years, it is vital to evaluate the health, social, educational, and quality of life outcomes beyond infancy and early childhood for affected children.  However, existing U.S. population-based data are lacking these outcomes among those born with a CHD and the changes that may occur with time and age.  Current population-based research relies on existing cross-sectional data from surveys such as the National Survey of Children’s Health.  However, this survey does not collect sufficient data to distinguish a CHD from acquired heart conditions, nor does it have detailed information on type of CHD, age at diagnosis, presence of other birth defects, and details at birth (e.g preterm birth).   Generating a population-based group of CHD-affected children is difficult.  Standard survey methods, such as those of a sample household survey, would not identify sufficient numbers of children living with a CHD.  Existing birth defects surveillance systems identify babies born with a birth defect, but do not continue to track identified children.  Therefore, the data is limited to their birth defect diagnoses and characteristics at time of birth.  For this surveillance project, we intend to use data from U.S. state birth defects surveillance systems to identify a population-based sample of children and adolescents born with a CHD and their caregivers. Objectives The objective of this non-research, surveillance project is to identify a population-based sample of children and adolescents with a CHD identified through U.S. state birth defects surveillance systems and collect information via a parent/caregiver survey regarding the children’s cardiac and other healthcare utilization, barriers to health care, quality of life, social and educational outcomes, and transition of care from childhood to adulthood as well as needs and experiences of the caregivers.  The survey would be administered to parents/caregivers of all children and adolescents as well as to adolescents themselves. The information collected from these population-based surveys will be used to inform current knowledge of the healthcare needs of the pediatric population with CHDs.