When should ulcerative colitis patients undergo colectomy for dysplasia? Mismatch between patient preferences and physician recommendations

Abstract

Background: If dysplasia is found on biopsies during surveillance colonoscopy for ulcerative colitis (UC), many experts recommend colectomy given the substantial risk of synchronous colon cancer. The objective was to learn if UC patients' perceptions of their colon cancer risk and if their preferences for elective colectomy match with physicians' recommendations if dysplasia was found.

Methods: A self-administered written survey included 199 patients with UC for at least 8 years (mean age 49 years, 52% female) who were recruited from Dartmouth-Hitchcock (n = 104) and the University of Chicago (n = 95). The main outcome was the proportion of patients who disagree with physicians' recommendations for colectomy because of dysplasia.

Results: Almost all respondents recognized that UC raised their chance of getting colon cancer. In all, 74% thought it was "unlikely" or "very unlikely" to get colon cancer within the next 10 years and they quantified this risk to be 23%; 60% of patients would refuse a physician's recommendation for elective colectomy if dysplasia was detected, despite being told that they had a 20% risk of having cancer now. On average, these patients would only agree to colectomy if their risk of colon cancer "right now" were at least 73%.

Conclusions: UC patients recognize their increased risk of colon cancer and undergo frequent surveillance to reduce their risk. Nonetheless, few seem prepared to follow standard recommendations for elective colectomy if dysplasia is found. This may reflect the belief that surveillance alone is sufficient to reduce their colon cancer risk or genuine disagreement about when it is worth undergoing colectomy.

FIGURE 1

Distribution of patients’ thresholds for undergoing colectomy for the 120 patients who disagreed with the recommendation for colectomy. Patients were provided the following scenario: “After having a colonoscopy, your doctor could tell you that although they did not see a cancer, there are pre-cancerous changes in your colon. These pre-cancerous changes predict that you may already have cancer somewhere in your colon, but it is not detectable by colonoscopy. Therefore, your doctor recommends having your entire colon removed now. Your doctor suggests that you can have a surgery called a J-pouch. This surgery involves creating a pouch out of a portion of the remaining intestine and connecting it to the anus. You would not have an external bag, and you would move your bowels normally through your anus. On average, people who have a J-pouch have approximately 5–8 bowel movements/day.”