Background: As the number of adults with congenital heart disease (CHD) has increased, so has the number of women with CHD of childbearing age. The 2019 Centers for Disease Control and Prevention report on maternal morbidity in the United States identified cardiovascular conditions as the cause for more than 33 percent of pregnancy-related deaths. This is in part due to the number of women entering pregnancy with preexisting heart disease. The increase is largely attributed to pregnancies in women with CHD.
Proposed Solution to the Problem: Following previous models, the project team will build a consortium of key stakeholders focused on the care of women with CHD. The consortium will bring patient voices to the forefront and will examine trends and factors contributing to increased maternal morbidity and mortality in women with CHD. Once the consortium is created, members will be trained in how to engage and conduct patient-centered outcomes research/comparative effectiveness research (PCOR/CER). The consortium participants will also discuss sustainability models in collaboration with other organizations, focusing on continued patient engagement. Together, the team will create a five-year prioritized agenda outlining key concerns and issues related to pregnancy for people with CHD.
- Form a multidisciplinary, diverse consortium of patients with CHD, families of patients with CHD, clinicians, and researchers with expertise in the management of pregnant people with CHD
- Provide training and education to consortium members on the key elements of PCOR/CER
- Build a sustainable infrastructure to allow patients, clinicians, and providers to continue working together to reduce maternal mortality and morbidity in women with CHD through PCOR/CER
- Develop sustainability with promotion of patient engagement
Activities: The project team will identify a diverse multidisciplinary consortium of researchers, clinicians, patients/family members and advocacy organizations to invite for participation. The team will then undergo training and education in PCOR/CER that will be conducted through virtual seminars. Training will be used to generate surveys, engage the community, and conduct a meeting to determine important patient-prioritized research outcomes regarding maternal morbidity and mortality in CHD patients.
- A five-year research roadmap outlining the key priorities and recommendations with input from all key stakeholders, including patients
- Patient fact sheets summarizing the process of PCOR/CER key elements
- Two webinars on conducting PCOR/CER regarding maternal morbidity and mortality in CHD patients
- A set of short-term (1-3 year) goals and a set of long-term (5-10 year) goals
Patient and Stakeholder Engagement Plan: Patient partners will continue to be actively involved in this project. As part of the proposed project, patient stakeholders will help design all materials, with a lead role in patient-facing materials such as patient-directed surveys, educational one-pagers/meeting summaries, and other documents such as the RoadMap, short- and long-term goals, and the governance/oversight structure. Engagement strategies will be designed together with patients to directly respond to patient requests and needs.
Project Collaborators: Children's National Hospital, Alliance for Adult Research in Congenital Cardiology, inc., CURA strategies, Adult Congenital Heart Association (ACHA)