Intangible costs and benefits of ulcerative colitis surveillance: a patient survey.

Purpose: Colonoscopic surveillance in ulcerative colitis has costs and benefits beyond cancer prevention, which might influence program efficacy. This study assesses the more intangible aspects of surveillance.

Method: A questionnaire was sent to all patients on the St. Mark's colitis surveillance program. Data on quality of life (Euroqol-5D and Hospital Anxiety and Depression Scale), complications, and preferences for surveillance and information (Kranz Health Opinion Survey) were collated with demographics and surveillance history.

Results: Two hundred eighty-one of 329 patients (85.4 percent) responded. Median Euroqol score was 80. There were no perforations. Bleeding rate was 0.11 percent. No transfusions, endoscopic intervention, or surgeries were required. 24.0 percent were frightened before colonoscopies, correlating with anxiety (r = 0.25, P < 0.0001). 60.2 percent patients found colonoscopies comfortable; experienced colonoscopists caused less discomfort (r = 0.20, P = 0.0007). 83.8 percent patients thought they had received appropriate amounts of information. 97.8 percent patients believed surveillance important, 96.4 percent thought surveillance gave them reassurance, and 67.9 percent believed surveillance greatly reduced their cancer risk. Regarding cancer risk management, one-third of patients indicated they might not necessarily opt for surveillance in its current form.

Conclusion: Colonoscopic surveillance is well tolerated with an extremely low complication rate. Patients have a good quality of life (although lower than the general population) and believe surveillance is important and reassuring. However, many are anxious before their colonoscopy. The majority are happy with information quantity and quality, although none thought they received too much. Not all patients would necessarily opt for surveillance in its current form, and we must be willing to individualize cancer risk management to comply with patient preferences.