A structured patient education programme dedicated for patients with hypertrophic cardiomyopathy: "one for all and all for one"

Introduction

In accordance with the 2023 ESC Cardiomyopathy Guidelines (GLs), a holistic approach is required for the complex care of patients with hypertrophic cardiomyopathy (HCM), an essential part of which is the structured education of the patients and their families. The GLs emphasise the importance of having an evidence-based education plan and using questionnaires to measure the level of knowledge before and after the patient education programme (PEP).

Aims

To assess the effect of a novel structured PEP on the knowledge of a consecutive cohort of HCM patients about the disease itself, the recognition of emergency conditions and self-care.

Methods

A retrospective, single-centre, observational study was conducted at a tertiary cardiology centre in a real-world, consecutive cohort of referred HCM patients who participated in a structured PEP between 01.09.2025 and 01.12.2025. The interactive PEP was led by heart failure (HF) specialists and a specialist HF nurse, with the participation of HCM patients and their relatives.

The PEP aimed to summarise the main characteristics of the disease, pharmacotherapy and device therapy, arrhythmia management, self-care, and to teach how to recognise and handle emergency conditions related to HCM. Before and directly after the PEP, an 11-item simple choice questionnaire developed by our Working Group on HF and Cardiomyopathies was filled out by the participants to assess their knowledge. The results of the 11-item questionnaire were compared before and after the PEP using the Wilcoxon test. Patients’ feedback on the PEP was also investigated.

Results

The data of the first 31 consecutive patients participating in the PEP were analysed (male: 58%, age: 54 [42-68] years, left ventricular ejection fraction [LVEF]: 65 [58-75] %, hypertrophic obstructive cardiomyopathy [HOCM]: 55%, de novo diagnosis of HCM: 3%, eGFR ≤ 60 mL/min/1.73m2: 3%, coronary artery disease: 40%, hypertension: 82%, atrial fibrillation: 37%, implantable cardioverter defibrillator [ICD]: 42%, βB therapy: 97%, mavacamten treatment: 55%).

Based on the results of the 11-item questionnaire, patients’ knowledge significantly improved in the effect of the PEP (9 [8-11] vs. 11 [10-11] points, p<0.001). 100% of patients felt that the PEP expanded their knowledge and provided them with new, structured information, even within a cohort mainly composed of non-de novo HCM patients.

Conclusions

Our analysis highlights the importance of developing and routinely administering a structured PEP in HCM. The questionnaire results showed that patients' knowledge of HCM improved with the PEP, even within a cohort previously diagnosed with and followed for HCM.