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) addresses 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 χ2 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.