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Survey finds care for Europe's adults with congenital heart disease is inadequate

The provision of care in Europe for adults born with heart disease is inadequate and there are too few specialist centres to support their ever-increasing numbers, according to international research published on-line (Wednesday 26 April) in European Heart Journal[1] the journal of the European Society of Cardiology.

"Society has invested a lot towards increasing the life expectancy of these children, but seems less interested when they are grown up," said lead author Dr Philip Moons.

The report by Dr Moons and colleagues from Belgium, the Netherlands, Germany and Switzerland, is the latest finding from the Euro Heart Survey on Adult Congenital Heart Disease (ACHD). This part of the survey the first in the world of its kind examined how care is being organised in Europe, by analysing data from 71 centres who agreed to fill in questionnaires.

"Because we did not receive information for all centres in every country, we cannot draw conclusions about whether any individual country is better or worse than any other or whether a particular country has a sufficient number of centres," said Dr Moons, who is an assistant professor at the Centre for Health Services and Nursing Research of the Catholic University of Leuven in Belgium.

"Nor can we know to what extent this affects the outcome of treatment for patients. However, we can definitely say that the provision of care overall is suboptimal and there is much room for improvement. As participation in the survey was voluntary, it's likely that only the most motivated and active centres completed our questionnaire, so our results may actually mask the real situation. Certainly, our findings suggest that the number of adequately equipped centres is too limited to support the more than 1.2 million adults with congenital heart disease in Europe."

The eight recommendations for optimal ACHD care are:

  • A referral centre must have one, preferably two, cardiologists trained
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Contact: Margaret Willson
m.willson@mwcommunications.org.uk
44-153-677-2181
European Society of Cardiology
25-Apr-2006


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