Creation of a Decision Aid for Coronary Anomalies

Anomalous aortic origin of the right coronary artery from the left sinus of Valsalva (R-AAOCA) occurs in ~0.3% of the population. Although R-AAOCA carries an increased relative risk of sudden cardiac arrest (SCA), the absolute risk of SCA is exceedingly low (~0.02% per year). Both the inability to predict who will experience SCA, and the unknown risks of cardiac surgical intervention to correct this anomaly magnify patients', families', and caregivers' anxiety in deciding on an optimal treatment strategy. Decision aids that foster shared decision-making (SDM) are valuable for helping patients decide on a treatment when no optimal option exists. SDM is a collaborative model of decision making in which patients, families, and providers partake in making joint healthcare decisions. SDM aims to promote clinician and patient/family communication by providing the best available evidence and defining the best treatment strategy for a particular patient based on their values, preferences, and risk tolerance level. Given the complexities and uncertainties in management of patients with asymptomatic R-AAOCA, the use of a decision aid may facilitate SDM and improve psychosocial outcomes. This study aims to develop and test a decision aid to foster SDM for R-AAOCA. The specific aims are to:

Aim 1: Identify the key factors affecting management decision-making for patients with R-AAOCA without evidence of myocardial ischemia, parents/caregivers, and clinicians through a qualitative needs assessment.

Aim 2: Develop a decision aid to foster SDM in determining management strategy in individuals with R-AAOCA without evidence of myocardial ischemia utilizing user co-design principles and iterative feedback from patients, parents/caregivers, and clinicians.

Aim 3: Evaluate the impact of the implementation of the decision aid on SDM, communication, decisional conflict, decisional regret, and quality of life at the time of the decision and longitudinally over the following 6 months in a pre-post implementation study design.

The proposal will result in a patient- and family-centered decision aid to support SDM in R-AAOCA without evidence of myocardial ischemia as well as pilot implementation results to guide a larger study of the aid's use and impact. The pilot data will also allow for insights into the decision making choices of families, as well as the impact the diagnosis of R-AAOCA has on individuals and families. Importantly, this project can serve

Inclusion criteria

• Patients

• English-speaking
• 10-35 years of age
• Diagnosis of R-AAOCA without evidence of myocardial ischemia

Parents

• English-speaking
• Child 10-17 years of age
• Diagnosis of R-AAOCA without evidence of myocardial ischemia

Exclusion criteria

• Patients

• Other significant cardiac anomalies
• Unwilling or unable to provide consent
• Non-English Speaking Parents
• Child with other significant cardiac anomalies
• Unwilling or unable to provide consent
• Non-English Speaking