The Task Force on the Management of Grown-up Congenital Heart Disease of the European Society of Cardiology (ESC)
Endorsed by the Association for European Paediatric Cardiology (AEPC)
Guidelines summarize and evaluate all currently available evidence on a particular issue with the aim of assisting physicians in selecting the best management strategies for an individual patient, suffering from a given condition, taking into account the impact on outcome, as well as the risk–benefit ratio of particular diagnostic or therapeutic means. Guidelines are no substitutes for textbooks, and their legal implications have been discussed previously. Guidelines and recommendations should help physicians to make decisions in their daily practice. However, the ultimate judgement regarding the care of an individual patient must be made by his/her responsible physician(s).
A large number of Guidelines have been issued in recent years by the European Society of Cardiology (ESC) as well as by other societies and organizations. Because of the impact on clinical prac- tice, quality criteria for the development of guidelines have been established in order to make all decisions transparent to the user. The recommendations for formulating and issuing ESC Guidelines can be found on the ESC Web Site (http://www.escardio.org/ guidelines-surveys/esc-guidelines/about/Pages/rules-writing.aspx).
Members of this Task Force were selected by the ESC to rep- resent all physicians involved with the medical care of patients in this pathology. In brief, experts in the field are selected and under- take a comprehensive review of the published evidence for manage- ment and/or prevention of a given condition. A critical evaluation of diagnostic and therapeutic procedures is performed, including assessment of the risk – benefit ratio. Estimates of expected health outcomes for larger populations are included, where data exist. The level of evidence and the strength of recommendation of par- ticular treatment options are weighed and graded according to pre- defined scales, as outlined in Tables 1 and 2.
The experts of the writing and reviewing panels have provided disclosure statements of all relationships they may have which might be perceived as real or potential sources of conflicts of inter- est. These disclosure forms have been compiled into one file and can be found on the ESC Web Site (http://www.escardio.org/guidelines). Any changes in disclosures of interest that arise during the writing period must be notified to the ESC. The Task Force report received its entire financial support from the ESC without any involvement from the pharmaceutical, device, or surgical industry.
The ESC Committee for Practice Guidelines (CPG) supervises and coordinates the preparation of new Guidelines produced by Task Forces, expert groups, or consensus panels. The Committee is also responsible for the endorsement process of these Guidelines.
The finalized document has been approved by all the experts involved in the Task Force, and was submitted to outside specialists for review. The document was revised, and finally approved by and subsequently published in the European Heart Journal.
After publication, dissemination of the message is of paramount importance. Pocket-sized versions and personal digital assistant (PDA) downloadable versions are useful at the point of care. Some surveys have shown that the intended end-users are some- times unaware of the existence of guidelines, or simply do not trans- late them into practice, so this is why implementation programmes for new guidelines form an important component of the dissemina- tion of knowledge. Meetings are organized by the ESC, and directed towards its member National Societies and key opinion leaders in Europe. Implementation meetings can also be undertaken at national levels, once the guidelines have been endorsed by the ESC member societies, and translated into the national language. Implementation programmes are needed because it has been shown that the outcome of disease may be favourably influenced by the thorough application of clinical recommendations.
Thus, the task of writing guidelines covers not only the integration of the most recent research, but also the creation of educational tools and implementation programmes for the recommendations. The loop between clinical research, writing of guidelines, and imple- menting them in clinical practice can then only be completed if surveys and registries are performed to verify that real-life daily prac- tice is in keeping with what is recommended in the guidelines. Such surveys and registries also make it possible to evaluate the impact of implementation of the guidelines on patient outcomes. The guide- lines do not, however, override the individual responsibility of health professionals to make appropriate decisions in the circumstances of the individual patients, in consultation with that patient, and where appropriate and necessary the patient’s guardian or carer. It is also the health professional’s responsibility to verify the rules and regu- lations applicable to drugs and devices at the time of prescription.