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P163 Where do patients go for information on Inflammatory Bowel Disease (IBD)?

V. Warren, A. Rehman, C. Williams, S. Mumtaz, H. Bholah, D. Gracie, J. Hamlin, A. Ford, C. Selinger*

St Jame's University Hospital, Center for Digestive Diseases, Leeds, United Kingdom


Patient education is an important part in the management of patients with IBD. Information on IBD can be gathered from many sources including alternative information sources such as social media and the internet. We aim to investigate which information sources IBD patients use and trust.


Ambulatory IBD patients at a large British Teaching hospital were recruited. Data including demographics, disease characteristics, and use of information sources were gathered using structured questionnaires and from medical records.


Of 186 participants (57.5% female, mean age 49 years) 95 were suffering from Crohn's disease and 91 from ulcerative colitis. Highest educational achievement was secondary school (39%), college (26%) and university (35%). Only 65 patients were current or previous members of the patient organisation CCUK. 88% had access to the internet (75% using it daily), but only 27% used it frequently to search for health related information. Patients reported using official information leaflets (89%) and their hospital IBD team (75%) frequently to gather information. Fewer (25%) used their general practitioner and only 10% attended CCUK meetings. Internet based sources included official information sites (CCUK, NHS; used by 50%), news sites (28%) and patient discussion forums (27%). Very few patients used alternative health sites (9%), random links on search engines (17%) or patient supports sites from pharmaceutical companies (6%). Patients trusted information from the IBD team (89%) and official leaflets (77%) the most. Web based information was less trusted (official information sites 66%, patients forums 28%, random links 21%, alternative health sites 11%).


Despite the advent of social media and a host of health information on the internet patients turn to official paper based leaflets and their IBD team for information. When searching online most patients tend to use official websites with regulated information. The use of sites with unregulated and potentially misleading information is currently low. For the time being face to face education and paper based educational materials remain the cornerstone of patient education.