From Insight to Action: A National Patient-Centered Strategic Framework for Improving Reproductive Health Outcomes in Individuals With Congenital Heart Disease

Background: An increasing number of patients with congenital heart disease (CHD) are pursuing pregnancy with the potential for cardiovascular complications. This study aimed to establish patient-centered national research and care priorities to improve pregnancy-related outcomes for individuals with CHD. Methods: This mixed-methods study used a modified Stakeholder Engagement in Question Development methodology to systematically identify patient-centered priorities. Key activities included consortium engagement (phase 1), patient and provider questionnaires (phase 2), and an in-person facilitated meeting to explore survey results and follow-up virtual focus groups (phase 3). Reflexive thematic analysis was used to synthesize short- and long-term research priorities (phase 4). Results: Three overarching goals emerged: (1) improving access to specialized CHD, cardio-obstetrics, and mental health care; (2) improving quality and consistency in clinical care; and (3) increasing patient and community engagement. These goals were then expanded into 5 central themes: (1) communication within the health care setting; (2) community engagement; (3) ancillary clinical support; (4) integration of patient-reported outcomes; and (5) implementation, education, and knowledge mobilization. Short-term (1-5-year) goals included expanded telemedicine use, best practice recommendations for multidisciplinary care coordination, and targeted educational resources. Long-term (5-10-year) goals included expansion of adult CHD and cardio-obstetrics programs, integration of mental health services, and advocacy to improve insurance coverage. Conclusions: The consortium provided a national, community-driven prioritization that highlights actionable pathways to improve pregnancy outcomes for people with CHD. Sustained engagement with patients and community partners is essential to achieving durable improvements across cardio-obstetric care, education, research, and mental health.