Among 16 families managing inherited cardiovascular disease at Stanford Health Care, 81.2% expressed support for family-based shared medical appointments (SMAs) — coordinated group visits where multiple relatives are seen together. Of the 12 families who consented to recorded interviews, 83.3% believed SMAs would improve comprehension of their condition across generations, while 50% anticipated logistical benefits. Key concerns included reduced individualized care, privacy issues, and coordination complexity during visits.
Inherited cardiovascular conditions — including hypertrophic cardiomyopathy, long QT syndrome, and familial hypercholesterolemia — create a unique clinical burden where entire family trees require cascading screening and surveillance. Traditional individual-visit models often fragment communication across relatives and providers, potentially leaving gaps in risk awareness. Family SMAs represent a structurally innovative approach to closing that gap, leveraging shared genetic context to streamline education and care coordination simultaneously.
However, the limitations here are substantial. This qualitative study of just 16 families from a single, well-resourced academic center cannot establish generalizability across diverse healthcare settings or patient populations. Selection bias is probable — families willing to be interviewed may hold more positive views. The study measures perspectives, not outcomes, meaning improved comprehension hasn't been linked to actual clinical benefit or mortality reduction. As a preprint posted on medRxiv and not yet peer-reviewed, these findings require independent validation before shaping clinical policy. Still, the patient-demand signal is meaningful and positions family SMAs as a genuinely worth-testing model in cardiovascular genetics care.
