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Int J Cardiol. 2019 Oct 1;292:100-105. doi: 10.1016/j.ijcard.2019.04.077. Epub 2019 Apr 26.

Staffing, activities, and infrastructure in 96 specialised adult congenital heart disease clinics in Europe.

Author information

1
Center of Congenital Heart Disease, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland; Department of Public Health and Primary Care, KU Leuven, University of Leuven, Leuven, Belgium. Electronic address: corina.thomet@insel.ch.
2
Department of Public Health and Primary Care, KU Leuven, University of Leuven, Leuven, Belgium; Institute of Health and Care Science, University of Gothenburg, Gothenburg, Sweden; Department of Paediatrics and Child Health, University of Cape Town, South Africa.
3
Congenital and Structural Cardiology, University Hospitals Leuven, Department of Cardiovascular Sciences, KU Leuven, Leuven, Belgium.
4
Department of Cardiology, Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium.
5
Pediatric and Adult Congenital Heart Centre, IRCCS-Policlinico San Donato, San Donato Milano, Italy.
6
Division of Adult Congenital and Valvular Heart Disease, Department of Cardiovascular Medicine, University Hospital Muenster, Muenster, Germany.
7
Division of Pediatric Cardiology and Congenital Heart Disease, German Heart Center Munich, Munich, Germany.
8
Department of Cardiology, Vienna General Hospital, Medical University of Vienna, Vienna, Austria.
9
Intercenter Adult Congenital Heart Disease Unit, Department of Cardiology, Hospital Virgen del Rocio, Seville, Spain.
10
Department of Cardiology, Erasmus Medical Center, Rotterdam, the Netherlands.
11
Department of Adult Congenital Heart Disease, Royal Brompton Hospital, London, UK.
12
Cincinnati Children's Hospital Heart Institute, Cincinnati, OH, USA.
13
Center of Congenital Heart Disease, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.

Abstract

BACKGROUND:

Clinical guidelines emphasise the need for specialised adult congenital heart disease (ACHD) programmes. In 2014, the working group on Grown-up Congenital Heart Disease of the European Society of Cardiology (ESC) published recommendations on the organisation of specialised care for ACHD. To appraise the extent to which these recommendations were being implemented throughout Europe, we assessed the number of patients in active follow-up and available staff resources in European ACHD programmes.

METHODS:

We conducted a descriptive, cross-sectional, paper-based survey of specialised ACHD centres in Europe in late 2017 concerning their centre status in 2016. Data from 96 ACHD centres were analysed. We categorised ACHD programmes into seven different centre types based on their staff resources and composition of interdisciplinary teams.

RESULTS:

Only four centres fulfilled all medical and non-medical staffing requirements of the ESC recommendations. Although 60% of the centres offered all forms of medical care, they had incomplete non-medical resources (i.e., specialised nurses, social workers, or psychologists). The participating centres had 226,506 ACHD patients in active follow-up, with a median of 1500 patients per centre (IQR: 800-3400). Six per cent of the patients were followed up in a centre that lacked a CHD surgeon or congenital interventional cardiologist.

CONCLUSIONS:

A minority of European ACHD centres have the full recommended staff resources available. This suggests that as of 2016 either ACHD care in Europe was still not optimally organised, or that the latest ESC recommendations were not fully implemented in clinical practice.

KEYWORDS:

Adult; Cardiac care facilities; Congenital; Europe; Heart defects; Organisation of care

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