Reproductive health outcomes of congenital heart disease survivors: A report from the congenital heart disease project to understand lifelong survivor experience (CHD PULSE study).
Document Type
Article
Publication Date
4-2026
Identifier
DOI: 10.1016/j.ahj.2025.107338
Abstract
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.
Journal Title
American heart journal
Volume
294
First Page
107338
Last Page
107338
MeSH Keywords
Humans; Female; Heart Defects, Congenital; Male; Adult; Cross-Sectional Studies; Survivors; Reproductive Health; Middle Aged; Young Adult; United States; Adolescent; Counseling
PubMed ID
41506416
Keywords
Congenital Heart Defects; Cross-Sectional Studies; Survivors; Reproductive Health; United States; Counseling
Recommended Citation
Erdem S, Shi CY, Schwartz AD, et al. Reproductive health outcomes of congenital heart disease survivors: A report from the congenital heart disease project to understand lifelong survivor experience (CHD PULSE study). Am Heart J. 2026;294:107338. doi:10.1016/j.ahj.2025.107338
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