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Surgical Decision Making in Patients With Ulcerative Colitis: the Patient Perspective
Jessica N. Cohan*1, 2, Elissa M. Ozanne4, Justin L. Sewell3, Uma Mahadevan3, Daniel Dohan2, Madhulika Varma1, Emily V. Finlayson1, 2

1Department of Surgery, University of California, San Francisco, San Francisco, CA; 2Institute for Health Policy Studies, University of California, San Francisco, San Francisco, CA; 3Division of Gastroenterology, University of California, San Francisco, San Francisco, CA; 4The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth, Lebanon, NH

PURPOSE: Facilitating the meaningful participation of ulcerative colitis patients in the decision between end ileostomy and ileal pouch-anal anastomosis (IPAA) is an ongoing clinical challenge. We sought to characterize: 1) patients' desire to participate in decision making and 2) the processes used to prepare for decision making to inform the development of a surgical decision support tool.
METHODS: In this pilot study, we recruited adult patients with ulcerative colitis who were referred for surgical evaluation at three colorectal surgery clinics (tertiary referral center, HMO, and safety net hospital) who were candidates for IPAA and end ileostomy. We measured desire for participation in decision making using the control preferences scale, knowledge using a 13-item instrument (possible answers "true", "false", and "unsure"), and used closed- and open-ended questions to determine how patients prepared for decision making prior to meeting with the surgeon and which sources of information they considered most useful.
RESULTS: We analyzed data from 18 patients with a median age of 49 years. Prior to surgical consultation, 12 patients favored IPAA, 1 favored ileostomy, and 5 were unsure. Those who were unsure reported that they had inadequate information to make a decision. The most commonly cited reasons for choosing IPAA over ileostomy were concerns about ileostomy maintenance and desire to avoid a "bag". The median time spent learning about surgery was 5.5 hours (range 0-15). The most frequently used sources were the internet and information provided by physicians. Although patients reported that information provided by physicians was the most believable, it was also the least helpful. The median knowledge score was 9/13 (range 1-13), with 16/18 (88.9%) patients unsure or incorrectly answering at least one question. Most patients (88.9%) discussed the decision with others; most frequently with spouses (61%), friends (61%), parents (50%), and siblings (44%). These discussions were "extremely" or "very" important to 53% of patients. Patients desired active participation in decision making, with 93.8% reporting a preference to make the final decision about procedure type "on my own" or "on my own after seriously considering my doctor's opinion".
CONCLUSIONS: When faced with the decision between end ileostomy and IPAA, ulcerative colitis patients desire an active role in decision making. Patients frequently use multiple sources to learn about the options and discuss the decision with a variety of people in their lives. Current surgical decision support tools provided by physicians could be improved and should provide the educational information needed to support an active role in decision making. These tools should be presented in a format that can be used during discussions with others.

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