Friday, April 4, 2025
4/4/2025
Early Life Course of Children with Congenital Structural Heart Anomalies - Congenital heart defects are collectively the most common structural malformation, affecting approximately 1% of live-born children. The impacts of having a congenital heart defect can include infant and early childhood mortality and significant morbidity. Surgical, clinical, and co-morbid outcomes among children with congenital heart defects have been reported, but understanding how these children can be healthy and thrive is less known. In partnership with Centers for Disease Control Center for Birth Defects and Developmental Disabilities, we propose to conduct surveillance of children born with a congenital heart defects between 2006 and 2021 in Massachusetts to describe health and social outcomes, needs, and well-being in order to identify keys to flourishing. Specific outcomes to be measured include 1) health-related quality of life of the child and caregivers, 2) access to and utilization of health care, 3) care planning for transitioning to adulthood, 4) educational and social service needs and utilization, and 5) macro-level structures (e.g., indices of neighborhood resources and economic opportunity). Data generated from this surveillance project will improve the understanding and awareness of the needs and challenges to well-being among children with congenital heart defects and their families. In addition, results will also assess disparities in the needs and challenges arising from social factors. Future research of interventions aimed at closing gaps in needs and well-being will be informed by the data generated from this project.
HHS’ Tracking Accountability in Government Grants System (TAGGS) website provides access to detailed descriptions of grants, loans, aggregated direct payments and other types of financial assistance awarded by the HHS Operating Divisions (OPDIVs) and the Office of the Secretary Staff Divisions (STAFFDIVs).