Background: Anomalous aortic origin of a coronary artery (AAOCA) is a congenital heart disease where a coronary artery originates abnormally. AAOCA is associated with an increased risk of sudden cardiac death (SCD), most often during exercise in children and young adults. The mechanism of SCD, the risk for individual patients, and the effectiveness of different therapies are unknown. Caregivers and families are faced with the anxiety and uncertainty of choosing between observation and surgical management, each with varying risk profiles. To date, there has been no patient/family engagement to define patient-centered outcomes research (PCOR) priorities of the most meaningful outcomes for patients and families who face this condition.
Proposed Solution to the Problem: The project seeks to virtually engage a diverse range of AAOCA patients/families across the United States to identify and prioritize their most critical questions and gaps in AAOCA care. This will create a PCOR agenda that will identify research priorities for this population.
Objectives: The main objective of the project is to develop an AAOCA PCOR agenda. Additionally, the project team aims to engage patients and families with AAOCA to identify key gaps in care and meaningful patient-centered outcomes and establish a stakeholder network to stimulate research in this field. Long-term objectives include the establishment of a PCOR agenda that informs and guides future development of PCOR projects that lead to comprehensive and holistic care of patients and families of patients with AAOCA.
Activities: The project will use a formal qualitative methodology to engage participants through virtual experience groups and electronic surveys. Insights will be systematically coded to identify themes and gaps in care while developing a list of top questions. The process will continue with further virtual group meetings and surveys of patients/families and clinicians who will prioritize questions until refined to a final top 10 list.
Outcomes and Outputs (projected): The project will seek to develop a meaningful PCOR agenda by identifying the top 10 questions as identified by patients, families, and clinicians, which is significant given no PCOR for AAOCA currently exists. Additionally, a stakeholder network will be established for advancing PCOR in AAOCA.
- Awarded; In progress
- Engagement Award Project
The state where the project originates, or where the primary institution or organization is located.