Structure and activities of adult congenital heart disease programmes in Europe

Abstract

The tremendous improvement in life expectancy of patients born with a heart defect has prompted health-care institutions and individual health-care providers to develop facilities that specifically care for these patients as they grow older. The importance of specific adult congenital heart disease (ACHD) programmes is corroborated by European and North American guidelines for the management of ACHD patients.1,2 Hence, an increasing number of structured and unstructured programmes for adults with congenital heart disease have been established worldwide.3,4 Several reports, however, indicate that the number of available cardiologists and post-graduate medical fellows who are receiving specialized training in congenital heart disease is not meeting the estimated workforce requirements to care for the vast amount of affected patients.5–7 International recommendations state that one ACHD specialist centre is needed for every 5–10 million inhabitants.1,8 This means that for the European population of 730 million (http://esa.un.org/unpp/), 70–140 centres would be needed. A recent North American report, however, suggested that one centre per 2 million inhabitants can more realistically meet the needs of ACHD patients.9 For Europe, this translates to 365 ACHD centres. In addition to the number of ACHD programmes, the structure of such programmes is also important.3,10 Therefore, the European Society of Cardiology (ESC) Working Group on Grown-up Congenital Heart Disease surveyed European ACHD programmes to assess their staffing, clinical activities, available equipment, training, and supportive services. This article reports on the results of this survey. ### Participating centres We conducted a descriptive, cross-sectional survey of specialized ACHD centres in Europe. Fifty-six potential participating centres were identified through the ESC Working Group on Grown-up Congenital Heart Disease. We invited these centres to participate in our survey by sending an email to the respective head of the ACHD programme. These centres …