RESUMO
Background: Recommendations for return to play (RTP) for athletes with genetic (or congenital) heart diseases (GHD) predisposing to sudden cardiac death (SCD) have evolved from an initially paternalistic and conservative approach, to supporting a more flexible approach to decision-making. The experiences of athletes and their families during the RTP process are unknown. Objective: To understand current RTP processes. Methods: We administered a mixed-methods telephone interview combining quantitative and qualitative components to 30 athletes with a GHD who had RTP, and 23 parents. Participants were identified from the Yale ICD Sports registry and Mayo Clinic's Windland Smith Rice Genetic Heart Rhythm Clinic. Qualitative data were analyzed using a grounded theory approach to identify common themes. Results: Most common diagnoses were long QT syndrome and hypertrophic cardiomyopathy and most common sports, soccer, basketball, and football. Twenty-three athletes encountered ≥1 perceived barrier(s) to RTP: 17 were restricted by their first cardiologist; 6 were required to meet with school administrators, 4 signed waivers, and 3 hired lawyers. Common themes expressed by athletes and their parents were frustration with poor communication, perceived lack of physician knowledge of their diagnosis, and unilateral, paternalistic decision-making, as well as cynicism that physicians and schools were primarily concerned with liability. After RTP, 26 athletes had some form of emergency action plan, although responsibility was often left to the family. Conclusion: Many perceived barriers exist for athletes with GHD who wish to RTP after their diagnoses. Shared decision-making from the onset is critical for RTP.