Background: Patients with ulcerative colitis (UC) are often fearful about medication side effects and how the disease will affect their future. Our aim was to better understand what aspects of UC, and UC management, are most concerning to patients, and how they would like to be informed about treatment options.
Methods: A Web-based survey was sent to UC patients throughout the United States and Australia. In addition to standard closed-response questions, audio clips were embedded in the survey and respondents showed their strength of agreement or disagreement using moment-to-moment affect-trace methodology. Standard quantitative analysis was used for the survey results, and cluster analysis was performed on the affect-trace responses.
Results: A total of 460 patients with UC (370 patients from the United States and 90 patients from Australia) responded to the survey. Of them, 53% of the respondents were women, with a mean age of 49 (range 19–81) years. Most patients (87%) wanted to share treatment decision making with their doctors. The majority, 98%, wanted more than just a basic understanding of their disease. Patients were most concerned about the risk of colorectal cancer (37%), and the possible need for an ileostomy (29%). Only 14% of patients indicated that side effects from medications were their biggest concern. On affect-trace analysis, the most divergence in opinion centered on the appropriate timing for colectomy.
Conclusions: To facilitate informed treatment decisions for UC patients, in addition to reviewing the benefits and risks of medications, it is also important to discuss the best strategies for decreasing the risk of colectomy and colorectal cancer.
Article first published online 7 March 2016.
*Dartmouth-Hitchcock Inflammatory Bowel Disease Center, Dartmouth-Hitchcock Medical Center, Lebanon, New Hampshire;
†Department of Medicine, Geisel School of Medicine, Hanover, New Hampshire;
‡Department of Gastroenterology, Liverpool Hospital and University of New South Wales, Sydney, Australia;
§Ingham Institute for Applied Medical Research, South Western Sydney Clinical School, University of New South Wales, Sydney, Australia;
‖BDJ Solutions, Melrose, Massachusetts;
¶Delta Modelling, Mount Prospect, Illinois;
**Department of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania;
††Emmi Solutions, Chicago, Illinois; and
‡‡The University of Chicago Medicine's Inflammatory Bowel Disease Center, The University of Chicago Medicine, Chicago, Illinois.
Reprints: Corey A. Siegel, MD, MS, Inflammatory Bowel Disease Center, Dartmouth Hitchcock Medical Center, One Medical Center Drive, Lebanon, NH 03756 (e-mail: Corey.A.Siegel@hitchcock.org).
C. A. Siegel was supported by NIH Grant 1K23DK078678-01A1 and AHRQ Grant 1R01HS021747-01.
Author disclosures are available in the Acknowledgments.
Received October 13, 2015
Accepted January 13, 2016