The Informational Needs and Preferences of Patients Considering Surgery for Ulcerative Colitis: Results of a Qualitative Study

Abstract

Background: Patients considering surgery for ulcerative colitis (UC) face a difficult decision as surgery may or may not improve quality of life. National Institute for Health and Care Excellence guidelines for UC emphasize the importance of providing quality preoperative information to patients but note no quality studies for the desired content of this information. Our aim was to explore patient information preferences prior to undergoing surgery for ulcerative colitis. Methods: Semistructured interviews with patients who underwent an operation and patients who considered but declined an operation were conducted. Interviews explored informational preferences, with emphasis on preoperative information given, preoperative information desired but not received, and retrospective informational desires. Interviews were transcribed and coded using an inductive thematic analysis using NVivo software. Data saturation was assessed after 12 interviews, with interviews continuing until saturation was achieved. Ethical approval was gained prior to interviews commencing (16/NW/0639). Results: A total of 16 interviews were conducted before data saturation was achieved (male n = 7, female n = 9). Eight patients declined surgery, and 8 opted for subtotal colectomy with permanent end ileostomy (n = 5) or ileoanal pouch (n = 3). A total of 4 themes and 14 subthemes were identified. Three dominant subthemes of informational shortcomings emerged: "long-term effects of surgery," "practicalities of daily living," and "long-term support." Peer support was desired by patients but was infrequently supported by health care professionals. Conclusions: Current preoperative information does not address patient informational needs. Surgical consultations should be adapted to suit patient preferences. Clinical practice may need to be altered to ensure that patients are better supported following surgery.