OBJECTIVES: To describe the clinical characteristics, burden of illness, productivity, and support needs of patients with obstructive hypertrophic cardiomyopathy (HCM) in Italy (IT) and Spain (ES).

METHODS: Between July 2022 and January 2023, cardiologists provided information on up to 10 consecutive adult patients with symptomatic obstructive HCM as part of the Adelphi Disease Specific Programme, a cross-sectional survey with partial retrospective data collection.

RESULTS: 118 cardiologists (60, IT; 58, ES) provided data for 725 patients with obstructive HCM (365, IT; 360, ES). For IT and ES respectively, mean [standard deviation] age was 55.7 [13.0] and 58.2 [15.9] years, 65.8% and 60.3% were male and mean time since diagnosis was 2.4 and 3.6 years. 17.3% and 16.7% had undergone septal reduction therapies and 91.0% and 86.7% were currently prescribed pharmacological treatments for HCM, in IT and SP respectively. Symptomatic burden was similar in both countries, with dyspnoea (when active), palpitations, and fatigue most commonly reported. For IT and ES respectively, 11.5% and 9.2% of NYHA II, and 30.6% and 30.4% of NYHA III patients were not working due to HCM. In IT and ES respectively, 46.9% and 38.7% of NYHA III and 85.7% and 100.0% of NYHA IV patients required carer support. Mean support hours per week were 33.9 (IT) and 51.5 (ES); most carers were unpaid family members (89.9% (IT) and 96.1% (ES)).

CONCLUSIONS: Obstructive HCM is associated with substantial clinical and societal burden. As NYHA increases, patient productivity decreases and need for carer support increases. Despite current treatment, high symptom burden remains. This suggests the need for alternative treatment options.