Patients with ulcerative colitis reported greater concern about complications of inflammatory bowel disease than potential adverse events of medications, according to results of an online survey.
“Patients with ulcerative colitis are often faced with complex decisions regarding treatment of their disease. Due to concerns about starting immune suppressant therapy, a significant amount of time is spent in the clinic reviewing side effects of immunomodulators or biologics,” Corey A. Siegel, MD, MS, of the Dartmouth-Hitchcock Inflammatory Bowel Disease Center in New Hampshire, told Healio Gastroenterology. “However, our study showed that patients are actually more concerned about the long-term effects of their disease than adverse events of therapy.”
Corey A. Siegel
David T. Rubin
Along with Healio Gastroenterology Peer Perspective Board member, David T. Rubin, MD, of the University of Chicago Medicine Inflammatory Bowel Disease Center, Siegel and colleagues sent an online survey to UC patients in the United States and Australia, of whom 460 responded (80% from the U.S.; 53% women; mean age, 49 years; range, 19-81 years).
Aiming to provide better understanding of patient concerns, the survey included open- and closed-response questions that were developed using data from patient focus groups. The survey also used moment-to-moment affect-trace technology, which captured real-time reactions to audio clips from the patient focus groups that were embedded in the online survey.
Thirty-seven percent of respondents said increased risk for colon cancer was their biggest concern regarding their UC, and 29% said possible need for an ostomy was their biggest concern, whereas only 14% said adverse events from medication was their biggest concern.
Patients who had been exposed to immunomodulators and/or biologics were significantly more concerned about ileostomy (38%) compared with those who had not; those without exposure to advanced therapies were more concerned about increased risk for colorectal cancer (41%).
Among treatment options, the participants indicated they were most concerned with surgery (84%), followed by biologics (65%), steroids (63%), methotrexate (58%) and immunomodulators (45%). Moreover, 65% said they would only consider surgery as a last resort, 51% said they would like to have an in-depth understanding about UC and treatments, 87% said they would like to participate in shared decision making with their gastroenterologist regarding treatment, and 85% said a web-based decision aid would be helpful before meeting with a physician.
Analysis of moment-to-moment data showed appropriate timing for colectomy and fear and uncertainty about their future with the disease was where patient opinion was most divergent.
These findings indicate that “although providers do need to address benefits and risks of treatment, they also need to discuss the most effective methods of preventing complications such as colorectal cancer and colectomy,” Siegel said. – by Adam Leitenberger
Disclosure: Siegel reports he serves as a consultant and on advisory boards for AbbVie, Amgen, Janssen, Lilly, Pfizer, Prometheus, Salix, Takeda, Theradiag and UCB; has presented CME activities for AbbVie, Janssen and Takeda; and has received grant support from AbbVie, Janssen, Salix, Takeda and UCB. Rubin reports he serves as a consultant for AbbVie, Amgen, Cornerstones Health, Emmi, Genentech, Janssen, Prometheus, Pfizer, Shire, Takeda and UCB; has grant support from AbbVie, Genentech, Janssen, Prometheus, Shire, Takeda and UCB; is the cofounder of Cornerstones Health’s nonprofit medical education entity; and serves on the board of trustees for the ACG. Please see the full study for a list of all other researchers’ relevant financial disclosures.