Abstract

Most females with congenital heart defects (CHD) will reach reproductive age. Our objective was to examine whether presence of disabilities is associated with reproductive health counseling, concerns, and experiences among women with CHD. Methods: We used 2016-2019 population-based data from the Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG) among women ages 19 to 38 years with CHD born in Arkansas, Arizona, and Atlanta, Georgia. We examined contraceptive and pregnancy counseling, pregnancy concerns and experiences, and marital history by disability status. Disability was based on six validated questions on vision, hearing, mobility, cognition, self-care, and independent living. Multivariable Poisson regression was used to examine adjusted prevalence ratios (aPR) between reporting ≥ 1 disability and each outcome, adjusted for CHD severity, age, race/ethnicity, place of birth, and insurance type. Results: Of 783 survey respondents with complete data (88% of all respondents), 41.9% were 25-30 years of age, 66.8% were non-Hispanic White, and 41.5% reported ≥1 disability. Women with CHD and disabilities were more likely than women without disabilities to receive clinician counseling on safe contraceptive methods (aPR=1.3) and on avoiding pregnancy because of their CHD (aPR=2.3). They were also more likely to report concern about their ability to have children (aPR=1.2) and having delayed or avoided pregnancy because of their CHD (aPR=2.2). They were less likely to have ever been pregnant (aPR=0.8) or married (aPR=0.7). Associations held across specific disability types and after excluding 71 women with known chromosomal anomalies. Conclusions: Among women with CHD, those with disabilities may be more likely to receive clinician advice to avoid pregnancy and less likely to ever have been pregnant. Evidence-based information may improve services and help women with CHD and disabilities meet their reproductive health goals.

Full Text
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