ESC Clinical Practice Guidelines – tailored for patients

Yesterday at ESC Congress, ‘Cardiovascular Disease Prevention: What Patients Need to Know’, the second set of ESC Guidelines for Patients, was launched. This follows the publication of the first ESC Patient Guidelines on heart failure (HF) in May.

Developing a summary of ESC Clinical Practice Guidelines, specifically designed for patients, has been a key priority of the ESC over the last two years. ESC President Professor Stephan Achenbach (Friedrich Alexander University Erlangen Nuernberg - Erlangen, Germany) explains, “As healthcare professionals, we would like to see patients actively participate in decisions about their care, and actually giving them appropriate information makes them even better partners in the discussions. Developing specific patient guidelines is a way for the ESC to contribute towards better patient education by adding a new kind of health literacy that informs patients and complements the important work already being done by National Cardiac Societies and patient organisations.”

Mr. Richard Mindham – a patient representative on the ESC’s Patient Forum who was involved in the HF guidelines – explains how the new patient guidelines are very different from existing booklets. “I have read other patient information materials. These often provide very basic details on HF as a disease and recommend lifestyle changes etc., but broader information, for example, on all the available treatments, can be lacking. The ESC Guidelines for Patients describe the different types, severity and phases of HF, which are important when you wish to understand where you stand on the broad HF spectrum.” Crucially, the patient guidelines explain the range of different treatments available and why certain treatments are recommended for certain patients. “They also stress how important multidisciplinary teams are and emphasise the importance of self-care and rehabilitation in all of its forms,” notes Mr Mindham. “This simplified version parallels the professional guidelines, explaining the pathway a patient should travel along with their HF diagnosis, treatment and care. Consequently, it can aid patients in the understanding of the whole process they are going through and provide enough information to encourage patients to take part in shared decision making. With this knowledge, patients can see whether they are receiving optimal care and ask if there is something they are not being offered, for example, a comprehensive rehabilitation programme or one or more of the four drugs known to improve prognosis of HF with reduced ejection fraction.”

Project coordinator Professor Tiny Jaarsma (Linkoping University - Linkoping, Sweden) explains how the ESC Guidelines for Patients were developed. “Together with the ESC Patient Engagement Officer, Inga Drossart, we assembled a team of patient representatives, nurses and physicians who had been involved in the development of ESC Clinical Practice Guidelines. We started with a blank page and a flexible approach – we used our knowledge of interacting with patients and writing other patient materials to consider what they need to know and how to present it. We thought it might be difficult to condense more than 100 pages of professional guidelines into a short understandable document but it wasn’t! We then used lessons that we learned from the patient guidelines in HF to develop the CVD prevention guidelines.” Because of the nature of the topic and patient population, the format of the CVD prevention guidelines differs from the HF guidelines in that the content has been summarised in 12 key messages for everyone – patients and the public. There are also two new sets of patient guidelines in the pipeline on cardio-oncology and pulmonary hypertension.

Along with developing more patient guidelines, the next priorities are translation and dissemination and this requires the help of the ESC community. “We are hoping for the support of the National Cardiac Societies and healthcare professionals to translate the English versions to their local language in a coordinated way,” says Prof. Jaarsma. “We purposely designed the documents to be easy to adapt, for example, with simple graphics. Several countries have already started to translate the guidelines, which is great news.” She continues, “We have created a specific dissemination plan for each set of guidelines as the target populations are very different. For CVD prevention, we could all use these guidelines! Our ultimate aim now is to get the patient guidelines to where they can really make a difference – we want every doctor and nurse to be able to give them to every patient!”

Visit the ESC Guidelines Cube in the Lounge & Exchange Area for more information.