Department of Surgery, University of Auckland, Auckland, New Zealand.
Department of Colorectal Surgery, Cambridge University Hospital NHS Foundation Trust, Cambridge, United Kingdom.
Dis Colon Rectum. 2020 Mar;63(3):274-284. doi: 10.1097/DCR.0000000000001583.
Low anterior resection syndrome is pragmatically defined as disordered bowel function after rectal resection leading to a detriment in quality of life. This broad characterization does not allow for precise estimates of prevalence. The low anterior resection syndrome score was designed as a simple tool for clinical evaluation of low anterior resection syndrome. Although the low anterior resection syndrome score has good clinical utility, it may not capture all important aspects that patients may experience.
The aim of this collaboration was to develop an international consensus definition of low anterior resection syndrome that encompasses all aspects of the condition and is informed by all stakeholders.
This international patient-provider initiative used an online Delphi survey, regional patient consultation meetings, and an international consensus meeting.
Three expert groups participated: patients, surgeons, and other health professionals from 5 regions (Australasia, Denmark, Spain, Great Britain and Ireland, and North America) and in 3 languages (English, Spanish, and Danish).
The primary outcome measured was the priorities for the definition of low anterior resection syndrome.
Three hundred twenty-five participants (156 patients) registered. The response rates for successive rounds of the Delphi survey were 86%, 96%, and 99%. Eighteen priorities emerged from the Delphi survey. Patient consultation and consensus meetings refined these priorities to 8 symptoms and 8 consequences that capture essential aspects of the syndrome.
Sampling bias may have been present, in particular, in the patient panel because social media was used extensively in recruitment. There was also dominance of the surgical panel at the final consensus meeting despite attempts to mitigate this.
This is the first definition of low anterior resection syndrome developed with direct input from a large international patient panel. The involvement of patients in all phases has ensured that the definition presented encompasses the vital aspects of the patient experience of low anterior resection syndrome. The novel separation of symptoms and consequences may enable greater sensitivity to detect changes in low anterior resection syndrome over time and with intervention.
低位前切除术综合征在实践中被定义为直肠切除术后肠道功能紊乱，导致生活质量下降。这种广泛的描述方式无法准确估计其患病率。低位前切除术综合征评分被设计为一种用于临床评估低位前切除术综合征的简单工具。虽然低位前切除术综合征评分具有良好的临床实用性，但它可能无法捕捉到患者可能经历的所有重要方面。
本次合作旨在制定一个包含该疾病所有方面的低位前切除术综合征国际共识定义，并由所有利益相关者提供信息。
这是一项国际性的患者与提供者合作计划，使用在线 Delphi 调查、区域性患者咨询会议和国际共识会议。
三个专家组参与其中：来自 5 个地区（澳大拉西亚、丹麦、西班牙、英国和爱尔兰以及北美）和 3 种语言（英语、西班牙语和丹麦语）的患者、外科医生和其他卫生专业人员。
主要观察指标是确定低位前切除术综合征定义的优先事项。
共有 325 名参与者（156 名患者）注册。Delphi 调查的后续回合的回复率分别为 86%、96%和 99%。Delphi 调查共提出了 18 个优先事项。患者咨询和共识会议将这些优先事项进一步细化为 8 种症状和 8 种后果，这些症状和后果涵盖了该综合征的重要方面。
可能存在抽样偏差，特别是在患者小组中，因为在招募过程中广泛使用了社交媒体。在最终的共识会议上，外科小组也占据主导地位，尽管已经采取措施来减轻这种情况。
这是第一个由大量国际患者小组直接参与制定的低位前切除术综合征定义。患者在所有阶段的参与确保了所提出的定义涵盖了低位前切除术综合征患者体验的重要方面。症状和后果的新颖分离可能使人们更能敏感地检测到随着时间推移和干预措施的变化而出现的低位前切除术综合征的变化。
