Abstract
Introduction: The American Heart Association (AHA) recommends clinicians discuss reproductive health with women with congenital heart defects (CHD) beginning in adolescence due to their unique pregnancy and contraceptive needs. Therefore, we assessed reproductive health counseling and experiences among women with CHD, and differences by CHD severity. Methods: Women with CHD ages 19 to 38 years, identified in active, population-based birth defects registries from Arkansas, Arizona, and Atlanta, GA, completed the Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG) from 2016 to 2019, including questions about reproductive health counseling, concerns and experiences. Prevalence estimates standardized to all CH STRONG-eligible women and adjusted prevalence ratios (aPR), calculated with multivariable Poisson regression, assessed differences by CHD severity. Results: Of 765 female respondents, 40.7% were 19-24 years, 66.7% were non-Hispanic white, and 67.7% had > high school education. Overall, 21.3% received CHD-specific contraceptive counseling, 28.3% pregnancy counseling, and 12.8% advice to avoid pregnancy (Fig). Women with severe, compared to non-severe CHD, were more likely to receive clinician counseling about safe contraception (aPR=3.0, 95% confidence interval [CI]: 2.2-4.0), pregnancy (aPR=3.5, 95% CI: 2.7-4.6), and advice to avoid pregnancy (aPR=4.3, 95% CI: 2.9-6.5), and they were more likely to be concerned about their ability to have children (aPR=1.4, 95% CI: 1.1-1.8) and delay/avoid pregnancy (aPR=2.2, 95% CI: 1.5-3.2). No differences were seen in ever being pregnant (aPR=0.83, 95% CI: 0.6-1.1). Conclusions: Results suggest most women with CHD are not receiving AHA-recommended reproductive health counseling. Almost one in three women with severe CHD received clinician advice to avoid pregnancy, although AHA guidelines state pregnancy is contraindicated for few women with CHD.
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