Background: Despite the increasing utilization of sphincter and/or organ-preservation treatment strategies, many patients with low-lying rectal cancers require abdominoperineal resection (APR), leading to permanent ostomy. Here, we aimed to characterize overall, sexual-, and bladder-related patient-reported quality of life (QOL) for individuals with low rectal cancers. We additionally aimed to explore potential differences in patient-reported outcomes between patients with and without a permanent ostomy. Methods: We distributed a comprehensive survey consisting of various patient-reported outcome measures, including the FACT-G7 survey, ICIQ MLUTS/FLUTS, IIEF-5/FSFI, and a specific questionnaire for ostomy patients. Descriptive statistics and univariate comparisons were used to compared demographics, treatments, and QOL scores between patients with and without a permanent ostomy. Results: Of the 204 patients contacted, 124 (60.8%) returned completed surveys; 22 (18%) of these had a permanent ostomy at the time of survey completion. There were 25 patients with low rectal tumors (≤5 cm from the anal verge) who did not have an ostomy at the time of survey completion, of whom 13 (52%) were managed with a non-operative approach. FACTG7 scores were numerically lower (median 20.5 vs. 22,p= 0.12) for individuals with an ostomy. Sexual function measures IIEF and FSFI were also lower (worse) for individuals with ostomies, but the results were not significantly different. MLUTS and FLUTS scores were both higher in individuals with ostomies (median 11 vs. 5,p= 0.06 and median 17 vs. 5.5,p= 0.01, respectively), suggesting worse urinary function. Patient-reported ostomy-specific challenges included gastrointestinal concerns (e.g., gas, odor, diarrhea) that may affect social activities and personal relationships. Conclusions: Despite a limited sample size, this study provides patient-centered, patient-derived data regarding long-term QOL in validated measures following treatment of low rectal cancers. Ostomies may have multidimensional negative impacts on QOL, and these findings warrant continued investigation in a prospective setting. These results may be used to inform shared decision making for individuals with low rectal cancers in both the settings of organ preservation and permanent ostomy.
背景：尽管括约肌和/或器官保留治疗策略的应用日益增多，许多低位直肠癌患者仍需接受腹会阴联合切除术（APR），导致永久性造口。本研究旨在描述低位直肠癌患者的总体、性功能相关及膀胱功能相关的患者报告生活质量（QOL）特征，并进一步探讨有无永久性造口的患者报告结局之间的潜在差异。 方法：我们发放了一份包含多种患者报告结局测量工具的综合调查问卷，包括FACT-G7量表、ICIQ MLUTS/FLUTS量表、IIEF-5/FSFI量表以及针对造口患者的专用问卷。采用描述性统计和单变量比较方法，分析有无永久性造口患者在人口学特征、治疗方案及生活质量评分方面的差异。 结果：在联系的204例患者中，124例（60.8%）完成调查问卷；其中22例（18%）在调查时存在永久性造口。调查时无造口的低位直肠肿瘤患者（肿瘤距肛缘≤5厘米）共25例，其中13例（52%）接受非手术治疗。造口患者的FACT-G7评分中位数较低（20.5 vs. 22，p=0.12）。造口患者的性功能指标IIEF和FSFI评分也较低（功能更差），但差异未达统计学显著性。造口患者的MLUTS和FLUTS评分均较高（中位数分别为11 vs. 5，p=0.06；17 vs. 5.5，p=0.01），提示泌尿功能更差。患者报告的造口特异性问题包括可能影响社交活动与人际关系的胃肠道症状（如排气、异味、腹泻）。 结论：尽管样本量有限，本研究通过经过验证的测量工具，提供了以患者为中心、源自患者自身的低位直肠癌治疗后长期生活质量数据。造口可能对生活质量产生多维度负面影响，这些发现值得在前瞻性研究中持续探索。本结果可为低位直肠癌患者在器官保留治疗和永久性造口两种情境下的共同决策提供参考依据。
肿瘤(癌症)患者之家