Physical activity and quality of life in patients with hypertrophic cardiomyopathy in Japan: a quantitative study

Aim To describe the burden of hypertrophic cardiomyopathy (HCM) using patient-reported outcome tools and a study-specific questionnaire.Patients and methods This two-phase, cross-sectional, non-interventional, observational study (qualitative [previous] and quantitative [current]) included adults with HCM and New York Heart Association functional classification 2/3 recruited from healthcare facilities across Japan. The International Physical Activity Questionnaire (IPAQ), Kansas City Cardiomyopathy Questionnaire (KCCQ), Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ), and Hospital Anxiety and Depression Scale (HADS) were used alongside a questionnaire developed using the qualitative findings.Results The analysis included 120 patients (mean age, 59.1 ± 16.3 years; 55.5% [66/120] male), 60 each with non-obstructive and obstructive HCM. Patients with (vs. without) lifestyle changes had lower median IPAQ score (495.0 [363.0–1803.5] vs. 990.0 [369.4–2295.0], p = 0.159) and KCCQ – Clinical Summary Score (81.3 [65.6–90.7] vs. 92.0 [81.4–97.9], p < 0.001), and higher HADS-Depression (5.0 [3.0–8.0] vs. 2.0 [1.0–6.0], p = 0.001) and HCMSQ-shortness of breath (5.0 [2.0–6.0] vs. 3.0 [0.0–4.5], p < 0.001) scores. Most patients (83.9%) noticed HCM symptoms, and some patients attributed symptoms to causes other than HCM. Most patients (89.0%) told others about their HCM. Primary care physicians were the main information source (99.2%).Conclusions In this quantitative analysis, HCM affected patients’ lifestyles and physical activity.Clinical trial registration NCT06181617 (ClinicalTrials.gov).