Patient Perspectives on Potential Implementation of Coordinated Family Care Visits for Inherited Cardiovascular Disease

Introduction: Shared medical appointments (SMAs) are medical visits where multiple individuals are seen together in a group setting. For patients with inherited cardiovascular disease, where multiple family members often require ongoing cardiac care and screening, family SMAs may be particularly valuable as a tool to facilitate family communication and comprehension of their condition. This research aimed to identify patient perspectives on the potential benefits and challenges of family SMAs in comparison to an existing individual clinic model. Methods: Qualitative semi-structured interviews were conducted with adult family representatives. Each family had at least one family member seen at the adult and pediatric inherited cardiovascular disease clinics. Interview recordings were transcribed verbatim and inductively coded using a content analysis approach. Results: Sixteen families were interviewed in this study. The mean age of the family representative interviewed was 43.4 years ({+/-} 9.3 SD), and they were followed at Stanford Health Care for a mean of 7.3 years ({+/-} 4.2 SD). 81.2% (13/16) of families said they would find family SMAs beneficial. For interested families who consented to recorded interviews (n=12), benefits and challenges fell into two major categories: care quality and access and logistics. Interested families thought family SMAs would provide an added care quality benefit by increasing understanding among adults, children, and providers (83.3%, 10/12). Six of twelve participants interested in having family SMA visits felt there would be logistical/access-based benefits to this new model (50%, 6/12). Families also identified possible challenges with this model, such as less individualized care, potential privacy concerns, and concerns regarding the smoothness of the clinic process in coordinating a family SMA. Conclusion: The majority of families believed a family SMA model would provide added benefit to families with inherited cardiovascular disease, but requires thoughtful implementation and should be tailored to families? unique needs.