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.