Adolescent Women with Congenital Heart Disease: Self-Reported Reproductive Health Discussions with Health Care Providers

Abstract

Study ObjectiveThis study evaluated self-reported discussions with health care providers (HCPs) among adolescent and young adult (AYA) women with congenital heart disease (CHD). DesignData were collected through a one-time survey of AYA women. SettingParticipants were recruited from pediatric cardiology clinics. ParticipantsAYA women with CHD, ages 14-21 (N = 107) InterventionsNone Main Outcome MeasuresQuestionnaires assessed adolescent characteristics and specific HCP discussions regarding transmissibility of a cardiac condition to the infant, risk of pregnancy, and hormonal contraception. Outcome measures were self-reported discussions with HCPs about these reproductive health topics. ResultsMean age was 16.8 years (SD = 2.1). Self-reported reproductive health discussions were infrequent, including discussions on transmissibility of a heart condition to their offspring (37%), risk of pregnancy to their offspring (34%), risks of pregnancy to their health (46%), and risks of hormonal contraception given their heart condition (21%). Reported discussions were most commonly with a cardiologist. ConclusionsAYA women with CHD reported limited discussions about reproductive health topics important to those with CHD. Lack of appropriate and timely counseling could lead to poor maternal and child health outcomes. Targeted interventions that improve reproductive health discussions between HCPs and AYA women with CHD are needed to close critical information and service gaps.