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ECCO 2016: Professor Séverine Vermeire (Leuven, Belgium) discusses new patient guidelines for Crohn’s disease and ulcerative colitis which were released at this year’s 11th Congress of ECCO in Amsterdam, and Helen Terry (CCUK) discusses how they might be rolled out to patients in the UK.
ECCO-EFCCA Patient Guidelines – by Maria Dalby
Marco Greco, Milan, Italy; Séverine Vermeire, University Hospital of Leuven, Belgium; Salvatore Leone, Palermo, Italy; Paolo Gionchetti, University of Bologna, Italy; Martin Kojinov, Sofia, Bulgaria; Axel Dignass, Agaplesion Markus Hospital, Frankfurt, Germany.
Evidence-based guidelines are a vital tool for clinicians in the diagnosis and management of chronic disease; yet most patients are not able to understand these guidelines. To bridge this gap, the European Crohn´s and Colitis Organisation (ECCO) and European Federation of Crohn’s & Ulcerative Colitis Associations (EFCCA) have developed a set of patient guidelines for Crohn’s disease (CD) and ulcerative colitis (UC) which were released at this year’s 11th Congress of ECCO in Amsterdam. The ECCO-EFCCA patient guidelines represent a broad collaborative effort between patients, nurses and physicians and should provide patients with accessible information to allow them to play an active part in the decision-making around their condition and treatment.
The process of developing the ECCO-EFCCA patient guidelines involved two working groups, one for CD and one for UC, each consisting of 10 patients, 2 physicians and 2 nurses. The working group members selected 50 statements from the existing ECCO consensus documents on CD and UC that were deemed the most relevant for patients. These statements were ‘translated’ into patient-friendly language by professional medical writers. The finalised version of the ECCO-EFCCA patient guidelines also contains a glossary and visual aids to help patients have a dialogue with healthcare professionals.
The main focus of the ECCO-EFCCA patient guidelines is on the clinical symptoms of CD and UC, respectively, and on diagnostic approaches and induction and maintenance of remission. The importance of endoscopy is stressed as an essential for diagnosing both CD and UC. The role and place in therapy of different treatment options is explained. Both the CD and UC sections also outline the role of surgery and emphasise that opting for surgery does not mean that the medical therapy has ‘failed’.
The ECCO-EFCCA patient guidelines also include statements on important extraintestinal manifestations and complications of CD and UC. The CD patient guidelines highlight the importance of smoking cessation to reduce the risk of surgery, and the risk of thromboembolic events in hospitalised patients and outpatients with severe disease. The UC patient guidelines outline risk factors for developing colo-rectal cancer, including severe and persistent inflammation, a family history of bowel cancer, and primary sclerosing cholangitis (PSC) or post-inflammatory polyposis (PIP). In the UC section there are also statements regarding peripheral and axial arthritis, as well as psychological risk factors such as stress, depression and anxiety.
Dr Marco Greco from Milan, long-standing chairman of EFCCA, and ECCO president Dr Séverine Vermeire from Leuven in Belgium hailed the ECCO-EFCCA patient guidelines as a tremendous milestone not only in terms of content but also as an example of a highly efficient collaborative process, with less than a year taken from concept to completion. The ECCO-EFCCA patient guidelines are the first of this kind, not only in inflammatory bowel disease but in any disease area. The ECCO-EFCCA patient guidelines will provide a means of empowering patients to participate in a constructive relationship with healthcare professionals in a way that has the potential to improve treatment outcomes and quality of life, and reduce costs to the healthcare system.
Click on the links below to view the new guidelines
Patient Guidelines for Crohn´s Disease
Patient Guidelines for Ulcerative Colitis
