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首页> 外文期刊>Journal of Surgical Oncology >Risk-reducing surgery in FAP: role for surgeons beyond the incision.
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Risk-reducing surgery in FAP: role for surgeons beyond the incision.

机译：FAP中的降低风险的手术：切口以外的外科医生的作用。

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BACKGROUND: Although primary therapy in familial adenomatous polyposis (FAP) is surgical, little is known about patients' surgical decision-making experience. The objective was to explore the decision-making process surrounding risk-reducing surgery in FAP using qualitative methodology. METHODS: In-depth, semi-structured interviews with 14 FAP patients and 11 healthcare providers with experience caring for FAP patients were conducted. Using grounded theory, line-by-line content analysis identified categories from which themes describing patients' experiences emerged; analysis continued until data saturation. RESULTS: Median age at surgery was 23 (7-37) years; at interview 41 (19-74) years. Two patients underwent surgery secondary to cancer, the remainder for risk-reduction. Content experts included colorectal surgeons (3), geneticists (2), gastroenterologists (3), nurses (3).Three themes emerged: Information: Family was the primary information source, and patients' level of information varied. The importance of up-front information was emphasized. Influences on decision-making: Influential factors included family experiences, youth, emotional state, support, and decision-making role. Although patients often sought opinions, most (12/14) wanted an active/shared role in decision-making. Life after surgery: Patients described surgery as the "easy part," emphasizing the need for long-term relationships with care providers. CONCLUSIONS: Decisions surrounding risk-reducing surgery in FAP are unique. A decision support tool may facilitate decision-making, better preparing patients for life after surgery.
机译：背景：尽管家族性腺瘤性息肉病（FAP）的主要治疗是外科手术，但对患者的外科手术决策经验知之甚少。目的是使用定性方法探讨围绕FAP降低风险的手术的决策过程。方法：对14名FAP患者和11名具有护理FAP患者经验的医疗保健提供者进行了深入，半结构化的访谈。使用扎实的理论，逐行内容分析确定了描述患者经历的主题的类别;分析一直持续到数据饱和为止。结果：手术中位年龄为23（7-37）岁;在41（19-74）岁时接受采访。两名患者因癌症接受了外科手术，其余患者则降低了风险。内容专家包括大肠外科医生（3），遗传学家（2），肠胃病学家（3），护士（3）。出现了三个主题：信息：家庭是主要信息来源，患者的信息水平各不相同。强调了预先信息的重要性。对决策的影响：影响因素包括家庭经历，青年时期，情绪状态，支持和决策角色。尽管患者经常征求意见，但大多数（12/14）希望在决策中发挥积极/共同的作用。手术后的生活：患者将手术描述为“轻松的部分”，强调需要与护理提供者建立长期关系。结论：围绕FAP降低风险的手术的决策是独特的。决策支持工具可以简化决策过程，更好地为患者术后的生活做好准备。

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