Abstract
Background: Individuals with congenital heart disease (CHD) face higher rates of pregnancy-related complications and interventions, however, few studies have assessed ways to improve outcomes. Goal: Improve reproductive care and reduce maternal morbidity and mortality for pregnant individuals with CHD. Methods: We formed a diverse consortium of CHD patients, providers, and advocates to identify knowledge deficits. Survey responses were solicited through social media and professional and advocacy networks. Results: As of 6/2/23, respondents included 815 (11% male, 88% female) patients from 48 states DC, and 216 providers (19% male, 81% female). Providers included 90 (42%) midwives, 59 (28%) adult congenital cardiologists, and 41 (19%) maternal-fetal medicine specialists. Most patient respondents are CHD patients (n=781, 96%) with complex CHD anatomy (n=606, 81%) between the ages of 30 and 44 (52%) with 72% reporting an annual household income over $75,000. Some patients reported they had received contraception counseling (n=262); counseling was provided by a physician (n=149, 57%), registered nurse (n=37, 14%), or parent (n=36, 14%). Of 189 CHD patients, the top reasons cited for not pursuing a pregnancy included not being ready (n=80, 42%), concerns about their heart condition (n=78, 41%), and physician advice due to potential complications (n=59, 31%). More than half of the patient respondents (n=231, 51%) reported a pregnancy, and 147 (64%) reported their pregnancy caused stress and anxiety. Cost and provider education are top priorities for improving care for pregnant individuals with CHD for respondents with household incomes under $49,000 per year while access to specialized heart care and obstetrics are top priorities for those with incomes over $50,000 (see Figure 1). Conclusions: CHD patients and providers are eager to provide their experiences relating to pregnancy and patient-centered research is an important tool to bridge the knowledge gap.
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