What do patients want to know about their inflammatory bowel disease?

Being informed is not only a patient's right, it is also important in order to improve compliance and management. Apart from verbal consultations, informative material is often produced without prior analysis of what patients consider important to know. Patient information needs were defined in order to plan future educational programmes. A 44-item questionnaire was given to 100 Inflammatory Bowel Disease (IBD) out-patients (50 Crohn's Disease (CD) and 50 Ulcerative Colitis (UC). Sixty-two per cent of those with UC and 78% of those with CD consider themselves insufficiently informed about their disease. CU and CD patients indicated different priorities concerning areas where further information is requested: CD patient needs were aetiology, diet, symptoms, history, new treatments, risks deriving from treatment, cancer risk and consequences on work. UC patients indicated a different priority order: risk of cancer, new treatments, symptoms, psychological and diet factors and aetiology. The media preferred by patients were: specifically prepared books (73%), video-cassettes (20%) and leaflets (25%). Ninety per cent think that educational material prepared according to their needs could be very useful; however 35% think that knowledge of the possible severity of their disease might increase their anxiety.