Perceived and Actual Quality of Life With Ulcerative Colitis: A Comparison of Medically and Surgically Treated Patients

OBJECTIVES: Patients with chronic ulcerative colitis (UC) often refuse colectomy, despite data indicating that it might improve quality of life. We hypothesized that perceived utility values are different for patients living with UC compared with UC patients after total proctocolectomy. Our aims were to compare the perceived utility assigned by UC patients with and without a colectomy to standardized chronic UC and post-colectomy scenarios, and to compare the utility of actual health states among groups. METHODS: We surveyed patients in a tertiary referral center from three groups, including non-UC, UC patients without colectomy, and UC patients who were post-colectomy. We measured the Time-Trade-Off (TTO) utilities of subjects for standardized scenarios, describing moderate UC and a post-colectomy state. Among all UC patients (with and without colectomy), we measured TTO utility for their own health state. RESULTS: Responses were obtained from 150 patients per group (n = 450). The non-UC patients considered UC and colectomy scenarios equally (0.92), which was similar to UC patients without colectomy (0.90 and 0.91). Post-colectomy patients strongly preferred the colectomy scenario to the UC scenario (0.86 vs. 0.92, P < 0.001). The median utility of UC patients without colectomy for their actual health state was higher than that of post-colectomy patients (0.96 and 0.92, P < 0.05). Patients with more social support were more likely to have undergone colectomy compared with patients with little social support (odds ratio = 1.20 per dependent/supporter). CONCLUSIONS: Patients living with UC prefer their actual health state to a perceived UC scenario or a post-colectomy scenario. Patients who have undergone colectomy equate the quality of life in their actual state with that in a post-colectomy scenario, and prefer each to a perceived chronic UC state. Given the variety of preferences and the importance of social support, opportunities to interact with UC patients who have previously undergone colectomy could help patients living with UC and their physicians to navigate these complex choices.