In order to bring you the best possible user experience, this site uses Javascript. If you are seeing this message, it is likely that the Javascript option in your browser is disabled. For optimal viewing of this site, please ensure that Javascript is enabled for your browser.
Did you know that your browser is out of date? To get the best experience using our website we recommend that you upgrade to a newer version. Learn more.

We use cookies to optimise the design of this website and make continuous improvement. By continuing your visit, you consent to the use of cookies. Learn more

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

Congenital Heart Disease in Children and Adults (GUCH)


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 today (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 and educated in adult CHD care.
  • Specialist centres should provide care in connection with paediatric cardiology and/or congenital cardiac surgery.
  • They must treat sufficient numbers and perform sufficient procedures to be effective and maintain high performance levels.
  • General adult cardiac facilities and non-specialist centres should have an established referral relationship with a specialist centre.
  • There should be a minimum of two cardiac surgeons trained in and practising adult and paediatric cardiac surgery.
  • Ideally these surgeons should perform 125 operations a year, with 50 being the minimum for ACHD.
  • There should be a fully equipped and specialist staffed electrophysiology laboratory.
  • There must be at least one nurse specialist trained and educated in the care of ACHD patients.

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.

A PDF of the full report is available on request

(ends)

References

(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.

Notes to editor

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

The European Society of Cardiology (ESC)
The ESC represents more than 45,000 cardiology professionals across Europe and the Mediterranean. Its mission is to improve the quality of life of the European population by reducing the impact of cardiovascular disease.

The ESC achieves this through a variety of scientific and educational activities including the coordination of: clinical practice guidelines, education courses and initiatives, pan-European surveys on specific disease areas and the ESC Annual Congress, the largest medical meeting in Europe. Furthermore, the ESC promotes cardiovascular disease prevention messages to the general public, most notably during its annual ‘For Your Heart’s Sake’ event, a fun yet educational event offering risk assessment and prevention advice, held in parallel to the Congress each year.

The ESC comprises 2 Councils, 4 Associations, 23 Working Groups and 49 National Cardiac Societies. Both the ESC Congress and ‘For Your Heart’s Sake’ take place in late August/early September each year in a European ‘Heart-Healthy City’. The ESC Congress 2006, to be held from 2-6 September in Barcelona, Spain, will be a joint meeting with the World Heart Federation's XVth World Congress of Cardiology.

The ESC administrative headquarters are based at the European Heart House, Sophia Antipolis, France.