New research, published in the European Heart Journal, concludes that care for adults with congenital heart disease (CHD) is inadequate, and that there are not enough support centres to deal with increasing numbers of adults with CHD. The report linked researchers in Belgium, the Netherlands, Germany and Switzerland, looking at provisions for those who suffered heart disease as children, but went on to survive into adulthood - an increasingly likely outcome thanks to improvements in forms of treatment. The researchers started the Euro Heart Survey on Adult Congenital Heart Disease (ACHD) to compare clinical practice with established recommendations, and to describe how care is organised. It is the first such study anywhere in the world. The report estimates that there are 1.2 to 2.7 million people who have survived CHD beyond the age of 15 in the EU. '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 from University Hospital, and the Katholieke Universiteit in Leuven, Belgium. The survey monitored 79 different centres across the majority of EU Member States and in Turkey, Egypt, Israel, Switzerland and Armenia, although results from only 71 centres were used. The survey revealed a wide variance in the standards and provisions across the board. 'It is remarkable that some of the specialist centres had fewer outpatient visits, hospitalisations, and operations than did some of the non-specialist centres,' reads the report. 'If the recommendations cited in this article represent the gold standard of best clinical practice, the European provisions for caring for ACHD patients can be considered to be less than optimal,' the report continues. '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. In fact, the true state of care for adults who have suffered from CHD may actually be worse than the study suggests. 'As participation in our 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 CHD in Europe,' said Dr Moons. The study has made eight recommendations for best practice: - at least one cardiologist trained in adult CHD at referral centres; - specialist centres to provide care in conjunction with paediatric cardiology and/or congenital cardiac surgery; - centres need sufficient patients to maintain a high performance of surgical procedures; - adult and non-specialist centres to have referral links to specialist centres; - at least two surgeons trained in cardiac and paediatric cardiac surgery; - surgeons to perform a minimum of 50, but ideally 125 operations per year; - fully equipped and staffed electrophysiology lab; - at least one nurse trained to specialise in adult CHD. Of the specialist centres (48 out of the 71 total), only nine fulfilled all eight recommendations, and of the non-specialist centres, only 14 collaborated with specialist centres. The authors acknowledge that there were several limitations to the study, and that the initial findings require follow-ups at greater depth. In the interim, the report suggests, 'Governments, ministries of health, and healthcare professionals are obliged to provide adequate human and financial resources to meet the increasing needs of the growing population of adults with CHD and to achieve optimum care for this population.' 'If we are to fully 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,' said Dr Moons.
Belgium, Switzerland, Germany, Netherlands