PURPOSE: Hypertrophic cardiomyopathy (including obstructive hypertrophic cardiomyopathy [oHCM]) is the most common inherited cardiomyopathy and causes lifestyle-limiting symptoms. However, data are lacking about patients’ perspectives on the daily impact of their symptoms. Therefore, this qualitative interview study was conducted to better understand patients’ experiences with oHCM.
METHODS: In October 2019, in-depth telephone interviews were conducted with 20 adults in the United States with oHCM. Eligible participants were identified by the Hypertrophic Cardiomyopathy Association. A semi-structured interview guide was used, and participants discussed key symptoms, impacts of oHCM, and important oHCM treatment goals.
RESULTS: Median participant age was 54 years (range 29–78), 55% were women, 85% were White, and 15% Hispanic or Latino. Median time since oHCM diagnosis was 3 years. Symptoms reported most frequently included shortness of breath (95%), dizziness or lightheadedness (95%), heart palpitations or fluttering (95%), fatigue (90%), and chest pain or pressure (80%). All 20 participants reported limitations in physical functioning and activities due to their symptoms, and most reported additional impacts of oHCM (e.g., emotional stress [80%], fear of dying [55%]). Most participants included shortness of breath and fatigue amongst their most bothersome symptoms and indicated that an oHCM treatment would need to improve at least one of these symptoms (thereby allowing them to be more physically/socially active) to be considered effective.
CONCLUSIONS: Patients with oHCM experience a high symptom burden and psychosocial impacts, affecting health status. Improved shortness of breath, fatigue, and physical functioning are highly valued by patients and represent important treatment goals.
