Qualitative analysis of experiences, burdens, and needs among patients with hypertrophic cardiomyopathy in Japan

AIM: To identify factors affecting the health-related quality of life (HR-QOL) of symptomatic patients with hypertrophic cardiomyopathy (HCM) using qualitative interviews exploring patients' experiences and perceptions. PATIENTS & METHODS: This cross-sectional observational study was conducted using qualitative web-based or telephone interviews. Adult patients with HCM in Japan who were experiencing burden because of HCM were included. In-depth interviews were conducted using a semi-structured interview guide. The data were analyzed using a thematic analysis approach. RESULTS: Nineteen patients completed the interview. Ten HR-QOL-related themes were identified. Many patients were unaware that they had HCM symptoms, either no longer noticing them following life adjustments or attributing them to factors other than HCM. HCM affected multiple life aspects, including work, family, and social life. Patients resisted disclosing their disease to others and strongly resisted invasive treatment. Patients highly trusted their physicians but were reluctant to discuss their mental burdens and daily life challenges with them. CONCLUSIONS: This first qualitative study of HR-QOL in patients with HCM in Japan suggests that deeper physician - patient communication is needed to understand patient burden and needs, as patients have difficulty discussing their burdens with physicians and may lack awareness of HCM symptoms. CLINICAL TRIAL REGISTRATION: NCT06181617 (ClinicalTrials.gov).