Characteristics of children with congenital heart defects and their caregivers in three U.S. sites: the Congenital Heart Survey To Recognize Outcomes Needs and well-beinG of KIDS (CHSTRONG KIDS)

Background Many US children have congenital heart defects (CHD), yet data on their long-term outcomes have limitations. The Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG of KIDS (CHSTRONG KIDS) address these gaps by surveying caregivers of children with CHD identified through birth defect surveillance systems [BDSS]. Objectives To describe the CHSTRONG KIDS project design, characteristics of the eligible population, and the percentage not up-to-date on recommended cardiology care. Methods Children born 2006–2021 with CHD were identified using active, population-based BDSS in Atlanta, Georgia, Massachusetts, and Minnesota and linked to vital records. Caregivers of eligible (living) children with CHD were invited to complete surveys in 2024–2025. Characteristics were compared by site and response status using χ 2 tests. We also estimated percentages of children in CHSTRONG KIDS who had not seen a cardiologist within the guideline-recommended timeframe for their specific defects. Results Among 7239 identified children with CHD, 6240 were eligible for survey recruitment. Of those,1841 (30%) had caregiver-reported survey data. Several characteristics, including CHD severity, birth year, and Trisomy 21 diagnosis, varied by site ( p < 0.05). Survey response rates differed by site, CHD severity, maternal race, maternal education and rurality (p < 0.05), prompting development of post-stratification weights. A weighted 21.6% were not up-to-date on their cardiology care. Conclusion With data on >7200 CHD cases and >1800 caregiver-reported surveys, CHSTRONG KIDS provides a population-based view of long-term outcomes among children with CHD. Notably, one in five were not up-to-date on their cardiology care and therefore may not be represented in clinical cohorts.