"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.
[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.
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