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European Heart Journal Advance Access originally published online on January 9, 2006
European Heart Journal 2006 27(6):737-745; doi:10.1093/eurheartj/ehi718
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© The European Society of Cardiology 2006. All rights reserved. For Permissions, please e-mail: journals.permissions@oxfordjournals.org

Adherence to guidelines in the clinical care for adults with congenital heart disease: The Euro Heart Survey on Adult Congenital Heart Disease

Peter Engelfriet1, Jan Tijssen1, Harald Kaemmerer2, Michael A. Gatzoulis3,4, Eric Boersma5, Erwin Oechslin6, Erik Thaulow7, Jana Popelová8, Philip Moons9, Folkert Meijboom5, Luciano Daliento10, Rafael Hirsch11, Valérie Laforest12, Ulf Thilén13 and Barbara Mulder1,*

1Department of Cardiology, Room B2-240, Academic Medical Centre, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands
2Department of Paediatric Cardiology and Congenital Heart Disease, Deutsches Herzcentrum, Munich, Germany
3National Heart and Lung Institute, Imperial College, London, UK
4Adult Congenital Heart Centre, Royal Brompton Hospital, London, UK
5Thoraxcenter, ErasmusMC, Rotterdam, The Netherlands
6CardioVascular Center, Division of Cardiology, University Hospital Zurich, Switzerland
7Department of Cardiology, Rikshospitalet, Oslo, Norway
8Department of Cardiac Surgery, Hospital Na Homolce, Prague, Czech Republic
9Centre for Health Services and Nursing Research, Katholieke Universiteit Leuven, Leuven, Belgium
10Department of Clinical and Experimental Medicine, University of Padua, Padua, Italy
11Department of Cardiology, Rabin Medical Center, Petah Tikva, Israel
12Euro Heart House, Sophia-Antipolis, France
13Department of Cardiology, University Hospital, Lund, Sweden

Received 24 June 2005; revised 26 October 2005; accepted 8 December 2005; online publish-ahead-of-print 9 January 2006.

* Corresponding author. Tel: +31 20 5662193; fax: +31 20 5666809. E-mail address: b.j.mulder{at}amc.uva.nl

This paper was guest edited by Prof. Fernando Maymone-Martins, Hospital de Santa Cruz, Portugal

Aims To investigate the role of guidelines in structuring the clinical care for adult patients with congenital heart disease (CHD), and to assess adherence to the guidelines in Europe.

Methods and results A selected number of current guidelines were chosen pertaining to operative procedures, investigations, and the use of medication (‘interventions’). The source for this analysis was the database of the Euro Heart Survey on adult CHD, which contains retrospectively collected data on 4110 patients followed-up for a median of 5.1 years. For each guideline investigated, patients were selected from the database for whom the particular guideline was relevant. The selected cases were classified according to two criteria: was there an indication for the particular intervention and did the intervention take place? In this manner, cases of ‘undue treatment’ and ‘insufficient treatment’ were identified. Adherence to guidelines was found to be good in the case of operative procedures and prophylactic drug treatment. However, regarding diagnostic procedures there had been adherence to guidelines in only slightly more than half of the cases.

Conclusion Guidelines have an important role in the actual clinical care of adults with CHD. However, large outcome studies are needed to develop more precise guidelines.

Key Words: Congenital heart disease • Adult • Adherence to guidelines • Euro Heart Survey


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