膀胱效用症状量表：一种新型膀胱癌患者报告结局工具。
The Bladder Utility Symptom Scale: A Novel Patient Reported Outcome Instrument for Bladder Cancer.
机构信息
Division of Urology, Department of Surgery (NP, AF, RG, GK), University of Toronto and University Health Network, Toronto, Ontario, Canada; Toronto Health Economics and Technology Assessment Collaborative (MDK, KEBo, KEBr), University of Toronto and University Health Network, Toronto, Ontario, Canada; Division of Internal Medicine and Geriatrics (MDK, SMHA), University of Toronto and University Health Network, Toronto, Ontario, Canada; Department of Medical Oncology (SSS), University of Toronto and University Health Network, Toronto, Ontario, Canada; Department of Radiation Oncology (PC), University of Toronto and University Health Network, Toronto, Ontario, Canada; University Health Network and Toronto General Research Institute (GT), Toronto, Ontario, Canada; Princess Margaret Cancer Centre, Toronto, Ontario, Canada; Division of Urology, Trillium Health Partners (MJ), Mississauga, Ontario, Canada.
Division of Urology, Department of Surgery (NP, AF, RG, GK), University of Toronto and University Health Network, Toronto, Ontario, Canada; Toronto Health Economics and Technology Assessment Collaborative (MDK, KEBo, KEBr), University of Toronto and University Health Network, Toronto, Ontario, Canada; Division of Internal Medicine and Geriatrics (MDK, SMHA), University of Toronto and University Health Network, Toronto, Ontario, Canada; Department of Medical Oncology (SSS), University of Toronto and University Health Network, Toronto, Ontario, Canada; Department of Radiation Oncology (PC), University of Toronto and University Health Network, Toronto, Ontario, Canada; University Health Network and Toronto General Research Institute (GT), Toronto, Ontario, Canada; Princess Margaret Cancer Centre, Toronto, Ontario, Canada; Division of Urology, Trillium Health Partners (MJ), Mississauga, Ontario, Canada.
出版信息
J Urol. 2018 Aug;200(2):283-291. doi: 10.1016/j.juro.2018.03.006. Epub 2018 Mar 9.
PURPOSE
Health related quality of life is important in bladder cancer care and clinical decision making because patients must choose between diverse treatment modalities with unique morbidities. A patient reported outcome measure of overall health related quality of life for bladder cancer regardless of disease severity and treatment could benefit clinical care and research.
MATERIALS AND METHODS
Prospective questionnaire development was completed in 3 parts. In study 1 the BUSS (Bladder Utility Symptom Scale) questions were created by experts using a conceptual framework of bladder cancer health related quality of life generated through patient focus groups. In study 2 patients with bladder cancer, including those treated with surgery, radiation and chemotherapy, completed the BUSS and 5 health related quality of life instruments at baseline and 4 weeks to assess validity and test-retest reliability. External validity was then explored in study 3 by administering the BUSS to 578 patients online and at clinics. Construct validity was assessed by whole and subscale Spearman rank correlations, and by comparisons of BUSS scores across known groups.
RESULTS
The BUSS had high whole scale correlation with the FACT-Bl (Functional Assessment of Cancer Therapy-Bladder) (r = 0.82, p <0.0001) and substantial to high subscale correlations with the EQ-5D™-3L (EuroQol 5 Dimensions Questionnaire-3 Levels) (eg emotional well-being r = 0.69, p <0.0001). BUSS scores were lower in patients with comorbidity and advanced disease. Cognitive debriefing and the 94% completion rate suggested good comprehensibility. There was excellent test-retest reliability (ICC = 0.79). Limitations included an extended time from diagnosis in many patients.
CONCLUSIONS
The BUSS is a reliable and valid patient reported outcome instrument for health related quality of life in all patients with bladder cancer regardless of the treatment received or the stage of disease.
目的
健康相关生活质量在膀胱癌护理和临床决策中很重要，因为患者必须在具有独特发病率的各种治疗方法之间进行选择。一种能够反映膀胱癌患者整体健康相关生活质量的患者报告结局测量方法，无论疾病严重程度和治疗方法如何，都可能有益于临床护理和研究。
材料和方法
前瞻性问卷开发分为 3 部分完成。在研究 1 中，使用通过患者焦点小组产生的膀胱癌健康相关生活质量概念框架，由专家创建 BUSS（膀胱功能症状量表）问题。在研究 2 中，膀胱癌患者（包括接受手术、放疗和化疗治疗的患者）在基线和 4 周时完成 BUSS 和 5 项健康相关生活质量量表，以评估其有效性和重测信度。然后，在研究 3 中通过在线和诊所向 578 名患者发放 BUSS 来探索其外部有效性。通过整群和子量表 Spearman 秩相关以及通过与已知组别的 BUSS 评分比较来评估结构效度。
结果
BUSS 与 FACT-Bl（癌症治疗-膀胱功能评估量表）的整体相关性很高（r = 0.82，p <0.0001），与 EQ-5D™-3L（欧洲五维健康量表-3 级）的子量表相关性较高（例如，情绪健康 r = 0.69，p <0.0001）。合并症和晚期疾病患者的 BUSS 评分较低。认知询问和 94%的完成率表明理解度良好。具有极好的重测信度（ICC = 0.79）。局限性包括许多患者从诊断到评估的时间延长。
结论
BUSS 是一种可靠且有效的患者报告结局工具，适用于所有膀胱癌患者的健康相关生活质量，无论接受何种治疗或疾病阶段如何。
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