METHODOLOGIC ISSUES IN ASSESSING THE QUALITY-OF-LIFE OF CANCER-PATIENTS

METHODOLOGIC ISSUES IN ASSESSING THE QUALITY-OF-LIFE OF CANCER-PATIENTS
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DOI:
10.1002/1097-0142(19910201)67:3
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发表时间:
1991-02-01
期刊:
影响因子:
6.2
通讯作者:
AARONSON, NK
AARONSON, NK
中科院分区:
医学1区
文献类型:
--
作者:
AARONSON, NK

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尽管生活质量评估已经成功地用于肿瘤学的描述性和评估性研究,但到目前为止,它们在癌症临床试验中的使用一直受到限制。一系列问题阻碍了以临床试验为基础的生活质量调查的进行。这些问题包括:缺乏理论模型来指导生活质量测量的发展;过度依赖于生活质量评估的特别方法;以及对临床研究环境中操作的实际限制的关注不足。最重要的是需要开发简明和心理测量学稳健的多维生活质量测量工具。建议今后在工具开发方面的工作重点是完善目前可用的通用措施或癌症特异性措施,并开发新的诊断特异性问卷模块。这项心理测量工作应该以与健康相关的生活质量领域之间关系的适当理论模型为指导。虽然人们普遍认为患者代表了最合适的生活质量数据来源,但也有人建议努力提高医生对患者表现状况和治疗毒性的评估的有效性和可靠性,并确定雇用家庭成员作为不愿或无法提供此类信息的患者的心理和社会健康状况的代理评分者的可行性。在基于临床试验的生活质量调查中出现的许多后勤问题应该引起更多的关注。特别是,研究设计和数据收集程序应该选择将患者、医务人员和机构的负担降至最低。
Although quality of life assessments have been employed successfully in descriptive and evaluative studies in oncology, their use in cancer clinical trials has, to date, been limited. A range of issues have impeded the conduct of clinical trial-based quality of life investigations. These include: the absence of theoretical models to guide the development of quality of life measures; over-reliance on ad hoc approaches to quality of life assessment; and insufficient attention to the practical constraints operating in clinical research settings. Of primary importance is the need to develop multidimensional quality of life instruments that are brief and psychometrically robust. It is suggested that future work on instrument development focus on refining currently available generic or cancer-specific measures, and on developing new diagnostic-specific questionnaire modules. This psychometric work should be guided by appropriate theoretical models of the relationship among health-related quality of life domains. Although it is widely accepted that the patient represents the most appropriate source of quality of life data, it is suggested that efforts also be directed toward improving the validity and reliability of physician-generated assessments of patients' performance status and of treatment toxicities, and toward determining the feasibility of employing family members as proxy raters of the psychologic and social health status of patients who are unwilling or unable to provide such information. Additional attention should be paid to the many logistical problems that arise in clinical trial-based quality of life investigations. In particular, research designs and data collection procedures should be selected that minimize patient, medical staff, and institutional burden.