Cardiomyopathies matter: a multistakeholder european initiative to improve patient outcomes through effective health policies
Authors: Bueser T , Costafreda E , Fajardo T , Janssens S , Katus H , Morner S , Pinciroli M , Taylor S , Tome Esteban M , Tiramani P , Trochu J N , Veltrop R , Olivotto I 
Published: July 2024

Background/Introduction

Cardiomyopathies are common and affect up to 1:250 of the population. Despite conferring a risk for sudden cardiac death and substantial disease burdens that could be reduced through better awareness, detection and care, cardiomyopathy care is rarely incorporated in European and national health policies. New European Society of Cardiology cardiomyopathy guidelines (1) could substantially benefit care but need to be supported by effective policies. Cardiomyopathies Matter is a Europe-wide, multistakeholder initiative aiming to raise awareness about cardiomyopathies and to ensure they receive the policy attention they warrant from EU and national decision-makers.

Methods

Cardiomyopathies Matters participants include experts from the fields of cardiology, cardiac nursing, economics, and patient advocacy, coordinated by a Secretariat, representing 36 countries and 6 patient advocacy groups (PAGs). A Policy Roadmap and other publications were co-created based on i) reviews of published and grey literature, and ii) input from topic experts and PAGs through 2 group workshops, individual consultation meetings, and a modified nominal group technique reviewing successive drafts toward consensus approval.

Results

The Roadmap (2) identifies unmet needs and challenges throughout the patient care pathway and offers holistic EU and national policy recommendations to address these and improve patient outcomes (Figure 1). These include policy measures to support early and accurate diagnosis, access to expert multidisciplinary care, guidelines-informed disease investigation and management, holistic support and empowerment of patients and carers, and research and innovation.

Key aspects for nurses and allied health professionals include the need for 1)improved knowledge and awareness to promote early diagnosis; 2)rapid referral systems to multidisciplinary care and access to specialist cardiomyopathy or heart failure nurses care coordination, 3)genetic counselling (index cases and cascade/family screening), and 4)support of patients and families.

Building on existing examples of good practice at national expert centre networks (e.g. France, Spain, UK),Cardiomyopathies Matter published updated policy recommendations for the European Union mandate (3), which are now being adopted more widely. National initiatives are underway or in development in Belgium, Hungary, Italy, Netherlands, Poland, and Spain. Local actions include multistakeholder roundtables and events, national Roadmap publications, events, educational activities, and media outreach.

Conclusions

EU and national Cardiovascular Health Action Plans are needed, with specific attention to cardiomyopathies and other inherited CVDs. Cardiomyopathies Matter fosters collaboration between healthcare professionals, PAGs and policymakers to promote policies that ensure all patients and families have access to guidelines-informed care.Figure 1Cardiomyopathy Priorities