Information Needs and Preferences of Recently Diagnosed Patients with Inflammatory Bowel Disease

Background: The aim of this study was to assess the information needs and experiences of patients who were recently diagnosed with inflammatory bowel disease (IBD). Methods: Seventy-four patients, diagnosed with Crohn's disease or ulcerative colitis, 3-24 months previously were recruited from gastroenterology practices and completed the information needs survey. Results: The most frequent sources of information in the first 2 months after diagnosis were the gastroenterologist and the Internet. In all, 24% of patients reported feeling dissatisfied with the information they were given at the time of their diagnosis, 31% were moderately satisfied, and 45% were very satisfied. There were many areas of information about the disease, its treatment, and self management that patients considered to be important and received little or no information about. When patients described how they would prefer to receive information if they were considering a new treatment in the future, 68% indicated that they preferred information from a medical specialist. Conclusions: Given the large number of topics judged by patients to be important and the complexity of the information required, it would be very difficult to communicate this information in oral discussion during typical consultation visits. Supplementing physician-patient consultations with well-designed written information or a Website recommendation may produce more effective communication and education. Patients rated these sources of information as having a high level of acceptability.