O2044: Engaging Community Partners in Patient-centered AAOCA Research: The Impact of a Conversation!

Background: Anomalous aortic origin of a coronary artery (AAOCA) is the second leading cause of sudden cardiac death in the young, affecting previously healthy children, with devastating effects on families, organizations, and communities. However, risk factors are ill-defined, management is variable, and long-term outcomes are unknown, factors leading to immeasurable anxiety. In this multi-institutional study, we sought to define patient-centered research priorities, focusing on core stakeholders feeling the burden of living with AAOCA: patients/families, community partners, clinicians/researchers.

Methods: This study engaged three major groups of stakeholders. The first group included Patients and Families invited from the 4 participating institutions and through dissemination in community and social media channels. The second group included Community Partners (academia, non-profit and societal organizations) reached by phone/email communication for awareness of the project and importance of partner engagement. The third group included Clinicians and Researchers gathered by common interest in AAOCA. This robust engagement led to defining stakeholder-initiated questions aimed at guiding meaningful research in AAOCA.

Results: With Patients and Families, awareness started with a conversation about their journey since the AAOCA diagnosis; the first AAOCA Patients and Families Symposium was established which enabled sharing of experiences, discussing similarities and differences in their journey, and increasing awareness of unmet needs; the National Coronary Anomalies Foundation led by affected families was created; a scholarship fund was developed, spearheaded and maintained by an affected child; and the Coronary Anomalies Research and Education (CARE) Collaborative (families and clinician/researchers) was constituted. With Community Partners, increased awareness led to identifying key shared goals within the community and disseminating knowledge by sharing results using their communication channels. With Clinicians and Researchers, regular AAOCA scientific meetings were organized; an international forum for case presentation and discussion was established; multi-institutional registries of patients were developed; and surveys distributed to clinicians led to better understanding of gaps in current AAOCA knowledge. The engagement of diverse groups of stakeholders affected by AAOCA raised awareness of the patients’ perspective on the impact of this diagnosis and the burden imposed on their emotional well-being and quality of life, while also highlighting clinicians’ concerns about lack of long-term data.

Conclusion: It is imperative to engage Patients and Families as they bring an unmatched expertise on the challenges of living with AAOCA, including experiences with seeking/receiving care. Community Partners desire information/research that will help their organizations meet their members’ needs, given the yet-to-be quantified risk of sudden cardiac death. Clinicians and Researchers may not be fully aware of the impact of this diagnosis on a patient’s well-being and emotional functioning until time is devoted to explore this aspect of care. The countless unmet needs identified by such multi-stakeholder engagement and the efforts devoted to define patient-centered priorities can guide future research.