Pregnancy care experiences for adults with congenital heart disease in the United States

Background Research to reduce maternal morbidity due to cardiovascular disease is vitally important in the United States, especially for the growing number of individuals with congenital heart disease (CHD) reaching childbearing age. Understanding patient experiences through patient engagement is critical to designing research that is aligned with the needs of adults with CHD undergoing pregnancy. Methods This patient engagement project, grounded in human centered design, focuses on the discovering patient and healthcare provider priorities for reducing maternal morbidity in CHD through patient centered outcomes research (PCOR). In this first stage, a capacity building consortium of over 90 key partners, including patients, advocates, healthcare providers, and researchers, was assembled. Baseline education on patient engagement, PCOR, and survey instrument design was delivered virtually. Two questionnaires were designed to elicit tacit knowledge - 1 for patients and 1 for providers - regarding gaps and needs across 4 key pillars: access to clinical care, patient and provider education, mental health, and research opportunities. The pillars were determined through thematic summaries from consortium discussions. Results The patient questionnaire received 828 responses (age range: 18-60 years) from 48 U.S. states. The provider questionnaire garnered 218 responses from professionals. Several common themes for areas of research were observed across all pillars including improved access to specialized cardio-obstetric care and improved education about the need for specialized care. Healthcare providers cited insufficient care coordination models and resources as a major barrier to providing effective clinical care. Both patients and providers expressed a need for improved access to mental health care. While only 28% of patient respondents who underwent a pregnancy reported a pre-existing mental health diagnosis, nearly 2/3 reported having significant anxiety symptoms related to their pregnancy. Of those with significant symptoms, 44% were unable to access mental health services. Additionally, only 55% of healthcare providers reported referral for assessment and treatment if mental health concerns arose during or after pregnancy. Conclusion The results provide valuable insights into the unique challenges faced by patients with CHD and their providers during pregnancy. By addressing the identified gaps through PCOR, we can work towards a goal to improve maternal care for women with CHD. (Am Heart J 2025;280:30-41.)