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

April 25, 2006

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:Dr Moons said: "We found that less than a fifth of specialist centres (nine out of 48) fulfilled all the ACHD recommendations and of the 23 non-specialist centres only 14 formally collaborated with a specialist centre. The two key areas that were most difficult for centres to comply with were performing the minimum number of congenital heart operations a year and involving nurse specialists in patient care. The median number of operations in specialist centres was 42, indicating that more than half failed to perform at least 50 operations a year and less than half the specialist centres had on-staff nurses specialising in ACHD care."

There were various possible explanations for the shortfall in care, according to Dr Moons. ACHD was a relatively new sub-discipline. Better treatment for children meant many now survived to adulthood, needing specific help and trained healthcare professionals - a situation that was recognised in the 1990s. Most healthcare professionals in the ACHD field train on the job and few universities organise formal education in this field. There was not the money to be made in ACHD as there was in interventional cardiology. Patients were not always referred to the most appropriate settings, thus limiting opportunities for specialist centres to increase expertise and improve their results. Also, importantly, the role of nurses was not fully recognised.

The report concluded that governments, ministries of health and healthcare providers were under an obligation to provide adequate human and financial resources to meet the increasing needs of the growing population of adults with congenital heart disease, and to achieve optimum care.

Dr Moons said that ACHD required an interdisciplinary teamwork approach, but care workers were being let down by the system. Individual care givers worked very hard to provide the best care they could, but were not always helped by the situation in which they found themselves.

He said that governments should review the international guidelines and see to what extent they were applicable in their countries. Different countries might need different solutions. But it was imperative for all governments to invest in educating ACHD professionals and provide sufficient funds for the development of a well-structured programme with specialised centres in every country. More research was also needed.

"If we are fully to realise the benefits of the cardiac surgery that can now be performed in infants and children, healthcare professionals must apply continuous effort to implement these recommendations," Dr Moons concluded.
-end-
[1] Delivery of care for adult patients with congenital heart disease in Europe: results from the Euro Heart Survey. European Heart Journal. doi:10.1093/eurheartj/ehi858.

A PDF of the full report is available on request

The European Heart Journal is an official journal of the European Society of Cardiology. Please acknowledge the journal as a source in any articles.

ESC Press & PR Office (for independent comment):
Lisa Abdolian:
Tel: +33 (0)4 92 94 86 27.
Fax: +33 (0)4 92 94 86 69.
Email: labdolian@escardio.org

European Society of Cardiology

Related Heart Disease Articles from Brightsurf:

Cellular pathway of genetic heart disease similar to neurodegenerative disease
Research on a genetic heart disease has uncovered a new and unexpected mechanism for heart failure.

Mechanism linking gum disease to heart disease, other inflammatory conditions discovered
The link between periodontal (gum) disease and other inflammatory conditions such as heart disease and diabetes has long been established, but the mechanism behind that association has, until now, remained a mystery.

New 'atlas' of human heart cells first step toward precision treatments for heart disease
Scientists have for the first time documented all of the different cell types and genes expressed in the healthy human heart, in research published in the journal Nature.

With a heavy heart: How men and women develop heart disease differently
A new study by researchers from McGill University has uncovered that minerals causing aortic heart valve blockage in men and women are different, a discovery that could change how heart disease is diagnosed and treated.

Heart-healthy diets are naturally low in dietary cholesterol and can help to reduce the risk of heart disease and stroke
Eating a heart-healthy dietary pattern rich in vegetables, fruits, whole grains, low-fat dairy products, poultry, fish, legumes, vegetable oils and nuts, which is also limits salt, red and processed meats, refined-carbohydrates and added sugars, is relatively low in dietary cholesterol and supports healthy levels of artery-clogging LDL cholesterol.

Pacemakers can improve heart function in patients with chemotherapy-induced heart disease
Research has shown that treating chemotherapy-induced cardiomyopathy with commercially available cardiac resynchronization therapy (CRT) delivered through a surgically implanted defibrillator or pacemaker can significantly improve patient outcomes.

Arsenic in drinking water may change heart structure raising risk of heart disease
Drinking water that is contaminated with arsenic may lead to thickening of the heart's main pumping chamber in young adults, according to a new study by researchers at Columbia University Mailman School of Public Health.

New health calculator can help predict heart disease risk, estimate heart age
A new online health calculator can help people determine their risk of heart disease, as well as their heart age, accounting for sociodemographic factors such as ethnicity, sense of belonging and education, as well as health status and lifestyle behaviors.

Wide variation in rate of death between VA hospitals for patients with heart disease, heart failure
Death rates for veterans with ischemic heart disease and chronic heart failure varied widely across the Veterans Affairs (VA) health care system from 2010 to 2014, which could suggest differences in the quality of cardiovascular health care provided by VA medical centers.

Heart failure: The Alzheimer's disease of the heart?
Similar to how protein clumps build up in the brain in people with some neurodegenerative diseases such as Alzheimer's and Parkinson's diseases, protein clumps appear to accumulate in the diseased hearts of mice and people with heart failure, according to a team led by Johns Hopkins University researchers.

Read More: Heart Disease News and Heart Disease Current Events
Brightsurf.com is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com.