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

Journal article
Authors Corina Thomet
Philip Moons
Werner Budts
Julie De Backer
Massimo Chessa
Gerhard Diller
Andreas Eicken
Harald Gabriel
Pastora Gallego
Alessandro Giamberti
Jolien Roos-Hesselink
Lorna Swan
Gary Webb
Markus Schwerzmann
Published in International journal of cardiology
Volume 292
Pages 100-105
ISSN 1874-1754
Publication year 2019
Published at Institute of Health and Care Sciences
Pages 100-105
Language en
Links dx.doi.org/10.1016/j.ijcard.2019.04...
www.ncbi.nlm.nih.gov/entrez/query.f...
Subject categories Health Sciences

Abstract

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.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.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.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.

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