Communication with adolescent females about reproductive health issues related to congenital heart disease

Background: Reproductive issues as related to congenital heart disease (CHD) such as recurrence risk in offspring, safety of hormonal birth control, and safety of pregnancy for mother and baby must be discussed in the clinic and at home. Providers can ensure correct information to assist the adolescent in making informed decisions about reproductive health and allow the parent to provide proper support and guidance to the adolescent. The level to which these conversations occur is unknown.

Methods: A survey distributed to female adolescent/mother dyads assessed self-reported conversations with the healthcare provider and between each other about reproductive health topics as related to the adolescent’s CHD diagnosis. A clinician survey was completed to assess CHD diagnosis, risk of hormonal contraception, and pregnancy risk for each patient.

Results: Among 91 qualifying dyads, 33.0% of adolescents and 42.9% of parents reported discussing recurrence risk of CHD with the healthcare provider. In regards to a conversation about the heart problem affecting the baby, 30.7% of adolescents and 27.8% of mothers reported discussing this with a provider. A minority (18.2% of adolescents and 25.8% of mothers) reported discussing the risk of hormonal contraception and similarly only 8.0% of adolescents and 12.2% of mothers discussed contraindications to pregnancy. In contrast, a majority of adolescents and mothers (72.5% and 85.7%, respectively) reported discussing subacute bacterial endocarditis prophylaxis with the provider. In assessing conversations between adolescents and mothers, only 44.2% of adolescents and 52.3% of mothers reported discussing with each other the safety of using birth control and 46.5% of adolescents and 64% of mothers reported discussing the safety of pregnancy. Overall, adolescents and mothers were fairly congruent in reporting these conversations and the majority of adolescents did not discuss safety of birth control and pregnancy (65% and 59.7%, respectively) with either their provider or their mother.

Conclusions: Adolescents with CHD both desire and need accurate information regarding their reproductive health. Important sources of this information are healthcare providers and mothers. We have demonstrated that adolescents and mothers report low rates of having these conversations with the healthcare provider, and in turn, mothers report low rates of having these conversations with their daughter. It is important that these topics be discussed at each appointment with the pediatric cardiologist and that the cardiologist encourage these conversations to happen at home between the mother and the adolescent.