Up to 30% of patients with ulcerative colitis will undergo surgery resulting in an ileal pouch-anal anastomosis (IPAA) or permanent end ileostomy (EI). We aimed to understand how patients decide between these two options. We performed semi-structured interviews with ulcerative colitis patients who underwent surgery. Areas of questioning included the degree to which patients participated in decision-making, challenges experienced, and suggestions for improving the decision-making process. We analyzed the data using a directed content and thematic approach. We interviewed 16 patients ranging in age from 28 to 68 years. Nine were male, 10 underwent IPAA, and 6 underwent EI. When it came to participation in decision-making, 11 patients felt independently responsible for decision-making, 3 shared decision-making with the surgeon, and 2 experienced surgeon-led decision-making. Themes regarding challenges during decision-making included lack of support from family, lack of time to discuss options with the surgeon, and the overwhelming complexity of the decision. Themes for ways to improve decision-making included the need for additional information, the desire for peer education, and earlier consultation with a surgeon. Only 3 patients were content with the information used to decide about surgery. Patients with ulcerative colitis who need surgery largely experience independence when deciding between IPAA and EI, but struggle with inadequate educational information and social support. Patients may benefit from early access to surgeons and peer guidance to enhance independence in decision-making. Preoperative educational materials describing surgical complications and postoperative lifestyle could improve decision-making and facilitate discussions with loved ones.

中文翻译：

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溃疡性结肠炎的回肠造口术或回肠袋-肛门吻合术：患者参与和决策需求

多达 30% 的溃疡性结肠炎患者将接受手术，导致回肠储袋 - 肛门吻合 (IPAA) 或永​​久性回肠末端造口术 (EI)。我们旨在了解患者如何在这两种选择之间做出决定。我们对接受手术的溃疡性结肠炎患者进行了半结构化访谈。质疑的领域包括患者参与决策的程度、所经历的挑战以及改进决策过程的建议。我们使用定向内容和主题方法分析了数据。我们采访了 16 名年龄在 28 至 68 岁之间的患者。9 人为男性，10 人接受 IPAA，6 人接受 EI。在参与决策方面，11 名患者认为自己对决策负责，3 名与外科医生共同决策，和 2 位经验丰富的外科医生主导的决策。有关决策过程中挑战的主题包括缺乏家人的支持、缺乏与外科医生讨论选择的时间以及决策的压倒性复杂性。改进决策方法的主题包括需要额外的信息、对同伴教育的渴望以及与外科医生的早期咨询。只有 3 名患者对用于决定手术的信息感到满意。需要手术的溃疡性结肠炎患者在决定 IPAA 和 EI 时在很大程度上经历了独立性，但在教育信息和社会支持不足的情况下挣扎。患者可以从早期获得外科医生和同行指导中受益，以提高决策的独立性。