Best practices in specialized hypertrophic cardiomyopathy centers in the United States: a survey of cardiologists, nurses, pharmacists, patients, and patient advocates

BACKGROUND: This survey gained insights into best practices and challenges at specialized hypertrophic cardiomyopathy (HCM) centers in the US to inform improvements in clinical practice and patient care, and support those without proximity to specialized centers. METHODS: We conducted a qualitative survey of eligible health care providers employed at comprehensive HCM centers. Institutions offered septal reduction therapies, implantable cardioverter defibrillator implants, and heart transplants. Patients and a patient advocacy group were also interviewed. RESULTS: A high degree of consistency in care team structure and standardization of processes for HCM diagnosis, including imaging and management, was observed. Patient and care team education on treatments, including cardiac myosin inhibitors, was critical for informed decision-making and efficiency. Further primary cardiology education could include HCM detection and management, including assessing sudden death risk. Community setting education was recognized as important for continuity of care. Major challenges included funding, and lack of dedicated HCM teams including administrative staff, ancillary specialists, and experienced sonographers. CONCLUSIONS: Diagnostic testing expertise and understanding of optimal processes, including different treatment options, are important to improve quality of care and outcomes. Select management considerations and best practices from comprehensive HCM centers may be adoptable by primary cardiology centers and providers.