Key priorities for the implementation of the 2023 ESC Guidelines for the management of cardiomyopathies in low-resource settings
What is this article about?
Cardiomyopathies are diseases of the heart muscle that can cause symptoms such as breathlessness, palpitations, fainting, and in some cases, life-threatening heart rhythm problems, which may lead to a sudden death. The European Society of Cardiology (ESC) published detailed guidelines on how these conditions should be diagnosed and treated in 2023. However, not every hospital or country has unrestricted access to the same level of medical equipment, tests or specialists. This article, written by leading European experts in cardiomyopathies, identifies the most important steps that doctors can take to improve care for patients with cardiomyopathies, even where resources are limited. This includes educating and supporting patients and their families. Patients are encouraged to contribute to their care by being aware of these priorities. The authors summarized 11 priorities.
Priority 1: “Think Cardiomyopathy”:
It is important that doctors and patients, particularly those who know they have other family members affected by a cardiomyopathy or someone who died suddenly, keep cardiomyopathy in mind as a possible explanation, so that diagnosis is not delayed. If you are affected by persistent symptoms which have not been fully explained, or if your family history is suspicious (sudden death in first-degree relatives, known cardiomyopathy in relatives), it may be reasonable to ask your doctor whether you should be checked for a cardiomyopathy.
Priority 2: Specialist Centres and Expert Teams
Cardiomyopathies are complex conditions that are best managed by a team of specialists — Cardiologists, Geneticists, imaging experts, and others working together. If your local hospital does not have this expertise, you may ask for referral to a specialist (tertiary or quaternary care) centre. European networks such as ERN GUARD-Heart exist to support patients who cannot easily access specialist care in their own country (https://globalhearthub.org/patient-councils/cardiomyopathy-patient-council/ )
Priority 3: Know Your Family History and Inform Your Family
Because cardiomyopathies are often inherited, your close relatives (parents, siblings, children) should be assessed even if they feel completely well. A simple ECG and heart ultrasound (echocardiogram) are the minimum tests required. Screening should be repeated every 1–3 years in younger relatives, and every 3–5 years after the age of 60. If a young family member has died suddenly and unexpectedly, the rest of the immediate family should be screened.
Priority 4: A Thorough Diagnostic Workup
Reaching the correct diagnosis requires putting together multiple pieces of information — your symptoms, your family history, your ECG, blood tests, including genetic tests, and imaging results from various modalities (e.g. ultrasound of the heart, MRI). This systematic approach helps doctors identify the exact type of cardiomyopathy and rule out conditions that may look similar but require different treatment.
Priority 5: ECG and Echocardiogram Are Fundamental (and simple for patients)
A heart tracing (ECG) and a heart ultrasound (echocardiogram) are the cornerstone of diagnosis and follow-up (both for affected individuals, as well as their relatives). They are widely available and relatively inexpensive.
Priority 6: Cardiac MRI When Needed
Cardiac MRI (also called CMR) provides detailed images of the heart muscle and is very useful in certain situations — for example, to assess the heart muscle for scarring, confirm a specific diagnosis, or guiding treatment options. It is not always available everywhere, but if your doctor feels it is necessary, you should be referred to a specialist centre that can provide it.
Priority 7: Genetic Testing
If you meet the criteria for a certain cardiomyopathy, genetic testing should be pursued— particularly because the results could explain your condition, help identify other at-risk family members or influence your treatment. If someone in your family died suddenly and a cardiomyopathy is suspected, genetic testing may be pursued in the deceased family member (although it may not be reimboursed in verey country). Ask your cardiologist whether genetic testing is appropriate for you or your family.
Priority 8: Genetic Counselling
Genetic testing should not be done in isolation. Before and after testing, you should have access to a genetic counsellor or a trained specialist who can explain what the results mean and what the implications are for you and for your family.
Priority 9: Protection against Sudden Cardiac Death
Some individuals with a cardiomyopathy have a higher risk of experiencing dangerous heart rhythms, which may cause cardiac arrest or even sudden cardiac death. You should inform your doctor if you experienced a sudden and/or unexplained loss of consciousness, especially in the setting of palpitations (which means: irregular or rapid heartbeats, or being aware of one’s own heartbeat). Your doctor should assess your individual risk based on the current evidence and discuss whether a device such as an implantable defibrillator (ICD) might be appropriate. This is called primary prevention. All patients who survive cardiac arrest due to ventricular arrhythmia (an irregular heart rhythm originating in the ventricle of the heart) should be referred for ICD implantation (secondary prevention).
Priority 10: Exercise — Safely and Individually
Most patients with cardiomyopathy can and should exercise (low to moderate intensity), as physical activity is beneficial for overall health. However, the right type and intensity of exercise depends on your specific condition. Indeed, for some cardiomyopathies (i.e. ARVC) vigorous exercise is actually discouraged/contraindicated. You should ask your doctor for personalised exercise prescription, tailored specifically to your goals and preferences.
Priority 11: Pregnancy Planning
If you have a cardiomyopathy or you are at risk of developing one due to your family history and are considering a pregnancy, it is essential to discuss this with a specialist team before conception. A joint cardiology and obstetrics team should be involved throughout the pregnancy to ensure the safest possible outcome for you and your baby. You should receive counselling on maternal and fetal risk, as well as on genetic transmission. Nevertheless, vaginal delivery is advisable in most women, with caesarian sections being considered only for selected cases.
A summary of Key priorities for the implementation of the 2023 ESC Guidelines for the management of cardiomyopathies in low-resource settings. European Heart Journal – Quality of Care and Clinical Outcomes (2025) 11, 910–918. Authors: Ruxandra Jurcut et al.
Prepared by Ruxandra Jurcut and Ruth Biller