INFORMATION FOR PATIENTS ABOUT INFLAMMATORY BOWEL-DISEASE

In inflammatory bowel disease it is important that patients understand their condition since this helps to improve long-term management of t he disease. The aim of this study was to assess the information given to patients with inflammatory bowel disease about their condition, its treatment and the National Association for Colitis and Crohn's diseas e. Two surveys were performed, using anonymous questionnaires. One was of all association members in north-east England, the other was a sam ple of patients attending medical outpatients. The surveys showed that more patients heard of the National Association for Colitis and Crohn 's disease from the media than from medical sources. Of patients seen in medical clinics, 75% would welcome more information about their dis ease. In four of the six participating centres less than half the pati ents had been told about the existence of a patients' association. The re was considerable variation in the instructions on what action to ta ke in the event of a relapse. These findings suggest that the opportun ity offered by outpatient clinics to educate and inform patients is of ten wasted. Clinicians often neglect to mention the National Associati on for Colitis and Crohn's disease, especially to patients with long-s tanding disease. A higher priority should be given to providing patien ts with appropriate information on inflammatory bowel disease. Three s imple audit standards for the organisation of outpatient clinic inform ation are proposed.