Inadequate Care of Adults Born With Heart Disease

A new report shows that the provision of care in Europe for adults born with heart disease is inadequate, and there are too few specialist centers to support their ever-increasing numbers.

The report 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 organized in Europe, by analyzing data from 71 centers that agreed to fill in questionnaires. The research was published on-line during April 2006 in European Heart Journal, 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, an assistant professor at the Catholic University of Leuven (Belgium).

"Because we did not receive information for all centers 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 centers,” continued Dr. Moons.

"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. Certainly, our findings suggest that the number of adequately equipped centers is too limited to support the more than 1.2 million adults with congenital heart disease in Europe.

The report stressed that ACHD required an interdisciplinary teamwork approach, but care workers were being let down by the system. Dr. Moons concluded by stating it was imperative for all governments to invest in educating ACHD professionals and provide sufficient funds for the development of a well-structured program with specialized centers in every country.



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Catholic University of Leuven