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............................................................................................................................................................................. Force. The finalized document is approved by the CPG for publication in the European Heart Journal. The Guidelines were developed after careful consideration of the scientific and medical knowledge and the evidence available at the time of their dating.

The task of developing ESC Guidelines also includes the creation of educational tools and implementation programmes for the recommendations including condensed pocket guideline versions, summary slides, booklets with essential messages, summary cards for nonspecialists and an electronic version for digital applications (smartphones, etc.). These versions are abridged and thus, for more detailed information, the user should always access to the full text version of the Guidelines, which is freely available via the ESC website and hosted on the EHJ website. The National Cardiac Societies of the ESC are encouraged to endorse, adopt, translate and implement all ESC Guidelines. Implementation programmes are needed because it has been shown that the outcome of disease may be favourably influenced by the thorough application of clinical recommendations. Health professionals are encouraged to take the ESC Guidelines fully into account when exercising their clinical judgment, as well as in the determination and the implementation of preventive, diagnostic or therapeutic medical strategies. However, the ESC Guidelines do not override in any way whatsoever the individual responsibility of health professionals to make appropriate and accurate decisions in consideration of each patient’s health condition and in consultation with that patient or the patient’s caregiver where appropriate and/or necessary. It is also the health professional’s responsibility to verify the rules and regulations applicable in each country to drugs and devices at the time of prescription.

2 Introduction

2.1 Why do we need new Guidelines on

the management of adult congenital heart disease? Since the previous version of the Guidelines on the management of grown-up congenital heart disease (CHD) was published in 2010, new evidence has accumulated for this patient group, particularly on percutaneous interventional techniques and risk stratification with regard to timing of surgery and catheter intervention, as well as medical treatment. This made a revision of the recommendations necessary. Since adult patients with CHD now present in increasing numbers at advanced ages, including the elderly, the term grown-up CHD no longer appears appropriate and was therefore replaced with adult CHD (ACHD) throughout the document. This is also in accordance with international literature.

2.2 Content of these Guidelines

Decision making in ACHD involves accurate diagnosis, timing of intervention, risk assessment, and selection of the most suitable type of intervention. In addition, specific aspects of medical treatment for conditions such as heart failure, pulmonary hypertension (PH), and anticoagulation are addressed. These guidelines focus on ACHD, are oriented towards management, and for more details in the topics of endocarditis, isolated valve disease, and aortic disease, refer to the relevant separate guideline documents published by the European Society of Cardiology (ESC).

2.3 New format of the Guidelines

The new Guidelines have been adapted to facilitate their use in clinical practice and to meet the readers’ demands by focusing on condensed, clearly presented recommendations. At the end of the document, section 5 proposes topics for future research and section 6 summarizes the key messages. For more background information please refer to the ESC Textbook of Cardiovascular Medicine.1

2.4 How to use these Guidelines

The Committee emphasizes that many factors ultimately determine the most appropriate treatment in individual patients within a given community. These factors include availability of diagnostic equipment, the expertise of cardiologists and surgeons, especially in the field of congenital heart surgery and percutaneous intervention, and notably, the wishes of well-informed patients. Furthermore, owing to the lack of evidence-based data in the field of ACHD, most recommendations are largely the result of expert consensus based on retrospective and prospective observational studies and registries. Therefore, deviations from these Guidelines may be appropriate in certain clinical circumstances.

2.5 What is new in the 2020 Guidelines?

Selected revised recommendations, new recommendations, and new concepts are summarized in Table 3.

3 General aspects

3.1 Prevalence of adult congenital heart

disease To date, the prevalence of CHD worldwide is 9 per 1000 newborns, with substantial geographic variation.2,3 While the prevalence of severe congenital heart defects is declining in many Western/ developed countries due to foetal screening and pregnancy termination, overall prevalence on a global scale is increasing.4 Due to medical, surgical, and technological evolutions over the past decades, >90% of individuals with CHD who are born, now survive into adulthood.5 As a result, the prevalence of CHD in the community has increased and now by far exceeds the number of children with CHD.6 CHD can be classified as mild, moderate, or severe (see Table 4).

3.2 Organization of care

When patients with CHD are approaching adulthood, they require transfer to ACHD care. This transfer should be preceded by a preparatory transition phase, which continues into adulthood according to the needs of the patient. Special healthcare organization and training programmes are required to meet the needs of this patient population.7 Importantly, the care for ACHD patients is a lifelong process (Figure 1) and also requires advance care planning strategies. The ESC Working Group on Grown-up Congenital Heart Disease published a position paper on recommendations for organization of care and training in the subspecialty of ACHD in Europe.8 The position paper refers to the previous ESC Guidelines9 and stratified patient care into Downloaded from academic.oup.com/eurheartj/article/42/6/563/5898606 by guest on 07 October 2026