The information needs and fears of patients with inflammatory bowel disease

A questionnaire containing a list of 36 questions and nine "fear factors" was sent to 139 patients with inflammatory bowel disease. Patients were asked to select the most and the least important questions and fear factors. Furthermore, the level of information and the source of information were recorded. 58% of the patients responded. The most important questions selected were possibilities of remission of the disease, and of developing cancer (47% and 43% of all answers respectively). Women judged questions regarding cancer, sex life, side effects of diagnostic techniques or drugs to be important more often than men, who were more interested in the cause, symptoms and natural history of the disease. Cancer was the fear factor selected most often (52%), being more important to patients with ulcerative colitis than to those with Crohn's disease, who in turn were more afraid of surgery than those with ulcerative colitis. 77% of the patients felt they had little or too little information. 87% received information from their physicians, 75% wanted to continue doing so. 62% wanted additional information from booklets, 18% from self-help groups. Thus, much information is lacking and many unjustified fears exist in patients with inflammatory bowel disease. This could probably be improved by providing more and better information by improved personal communication, and additionally from booklets or self-help groups.