Sexual behavior and reproductive concerns among adolescents and young adults with congenital heart disease

Objectives To examine the sexual behaviors and reproductive concerns among patients with moderate to complex congenital heart disease (CHD). Background There is a growing need to understand and address the psychosocial issues for older adolescents and young adults with CHD. Emerging sexuality is an issue for this age group and pregnancy for many women with CHD is risky. But, patientsʹ sexual behavior and reproductive concerns have not been studied. Methods Young adults (19–20 years old; n = 212) and adolescents (16–18 years old; n = 144) with moderate to complex CHD reported their sexual behaviors and reproductive concerns. Data were compared to normative samples from Canada and the United States. Results Few adolescents (14%) but many young adults (48%) with CHD were sexually active (at least one partner in the previous 3 months). These rates were lower than those of their healthy peers. Among the sexually active patients, 36% of the young adults and 72% of the adolescents engaged in one or more types of potentially risky sexual behavior (i.e., two or more partners in the past 3 months, questionable birth control, using drugs or alcohol before sex at least sometimes). Women with complex CHD had the highest levels of concern regarding their fertility and risk of genetic transmission of CHD, as well as concerns about adverse effects of pregnancy on their own health. Conclusions Sexual health should be discussed with adolescents and young adults with CHD. Particular attention should be given to discussing sexual health with women who have complex CHD.