Reproductive health outcomes of congenital heart disease survivors: A report from the congenital heart disease project to understand lifelong survivor experience (CHD PULSE study)

Background Improved survival of individuals with congenital heart disease (CHD) into adulthood has made reproductive health a crucial aspect of CHD care. Despite existing guidelines on heritability, contraception, pregnancy, and postpartum care, little is known about CHD survivors’ experiences and attitudes toward reproductive health. This study aimed to examine reproductive health outcomes and experiences among adults with CHD, with a focus on female survivors. Methods Data were drawn from the CHD PULSE (Project to Understand Lifelong Survivor Experience) study, a cross-sectional survey conducted from September 2021 to April 2023. Participants were adults (≥18 years) with at least 1 CHD intervention at 1 of 11 U.S. Pediatric Cardiac Care Consortium centers. CHD severity was categorized based on initial diagnosis and intervention. Categorical and continuous variables were analyzed using Chi-square and Kruskal-Wallis tests, respectively. Results Among 3,073 respondents (1,704 females, 1,369 males), 48% of female participants reported receiving no reproductive counseling. Factors significantly associated with receiving counseling included older age, later age at last surgery, marital history, severe CHD, higher income, government insurance, and more comorbidities (P ' .001). Women were significantly more likely to have biological children than men (40.4% vs 37.5%, P ' .0001). Conclusion Reproductive counseling is infrequent among women with CHD, especially among younger, unmarried, low-income individuals with less severe CHD and fewer comorbidities. Significant gender disparities in reproductive outcomes emphasize the need for tailored, gender-specific reproductive health counseling for CHD survivors.