Experiences, Values and Goals of People Living with Obstructive Hypertrophic Cardiomyopathy: Exploratory Patient...

This qualitative study explored the experiences, values and goals of patients living with symptomatic obstructive hypertrophic cardiomyopathy (HCM).

A cohort of patients were recruited between March and August 2023 via the Australian Genetic Heart Disease Registry and Cardiomyopathy Association of Australia. Patients were eligible if aged 18 years or older, English speaking and diagnosed with obstructive HCM, with symptomatic status reflective of New York Heart Association class II and above. Patients first completed the Kansas City Cardiomyopathy Questionnaire (KCCQ-23) and then underwent a 60-75-minute semi-structured video interview. Interviews were analyzed using thematic analysis, which was facilitated by NVivo software.

Ten patients participated in structured interviews (6 women and 4 men, mean age: 64.5 years). All were receiving pharmacologic therapy and 50% had undergone septal reduction therapy. Results showed that patients continue to experience notable impact from their obstructive HCM (KCCQ-23 summary score: 63.6; clinical summary score: 66.1). Patients frequently reported living with symptoms for years before diagnosis, often attributing limitations to poor fitness. Symptom burden was substantial, including dyspnea, fatigue, palpitations, chest pain, dizziness and syncope, with variability linked to exertion and environmental factors. Emotional responses ranged from resilience to anxiety, frustration, and fear of sudden death. Lifestyle adjustments were common: patients limited physical activity, modified daily routines, and reduced social engagement. Treatment goals prioritized efficacy and safety, with strong preference for therapies that alleviate symptoms and improve quality of life. Patients valued delaying surgery and favoured oral, once-daily regimens, while placing little importance on objective clinical measures (e.g. echocardiographic findings).

The study provides a unique window into lived experiences of patients with symptomatic obstructive HCM in Australia, demonstrating the impact extends far beyond symptoms. It highlights the need to consider individual patient priorities and treatment goals to provide a tailored, patient‑centric approach.