People with ulcerative colitis (UC) are more concerned about the long-term complications of their inflammatory bowel disease (IBD) than they are about possible side effects from its treatment, according to an online survey of UC patients in the U.S. and Australia.
The study drawn from the survey, “Patients with Ulcerative Colitis Are More Concerned About Complications of Their Disease than Side Effects of Medications,” was published in the journal Inflammatory Bowel Diseases.
“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, the study’s lead author from Dartmouth-Hitchcock Inflammatory Bowel Disease Center in New Hampshire, said in a press release. “However, our study showed that patients are actually more concerned about the long-term effects of their disease than adverse events of therapy.”
Researchers undertook the web-based survey to better understand those aspects of the disease and its management most worrisome to patients, and preferences regarding how treatment options are disclosed. In addition to standard closed-response questions, the survey also included audio clips with respondents showing the strength of their agreement or disagreement using moment-to-moment affect-trace methodology. Standard quantitative analysis was used on survey results, and cluster analysis was performed on the affect-trace responses.
A total of 460 people with UC responded to the survey, 370 (80 percent) from 45 states in the U.S. and 90 from Australia. Demographically, patients from each country were similar, and there were no significant differences in gender, income, employment status, relationship status, level of education, health status, or extent of colitis. Their mean age was 49.
Results showed that UC patients’ biggest concern was the increased risk of colon cancer (37 percent), and the possible need for an ostomy, or a surgically created opening between the skin and a body organ (29 percent). In comparison, 14 percent of the respondents noted side effects from medication as their greatest concern.
Patients who had been exposed to advanced therapies, immunomodulators and/or biologics, were significantly more concerned (38 percent) about ileostomy, or a surgical opening in the abdominal wall, than those who had not been exposed to these therapies. Among this latter group, 41 percent mentioned worry of an increased risk for colorectal cancer.
Concerns regarding treatment options included surgery (84 percent), biologics (65 percent), steroids (63 percent), methotrexate (58 percent), and immunomodulators (45 percent). In addition, 65 percent of the patients responding said that surgery would be the last resort. Fifty-one percent mentioned they would like a more in-depth understanding about UC and treatments, 87 percent said they would like to participate with their gastroenterologist in treatment decisions, and 85 percent said a web-based decision aid would be helpful before meeting with a physician.
In the affect-trace analysis, the greatest divergence in opinion centered on the appropriate timing for colectomy, as well as uncertainty and fear about their future with the disease.
The findings indicated 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,” Dr. Siegel concluded.