Gill T M, Feinstein A R
Department of Medicine, Yale University School of Medicine, New Haven, CT 06520-8025.
JAMA. 1994;272(8):619-26.
To evaluate how well quality of life is being measured in the medical literature and to offer a new approach to the measurement.
Original English-language articles having the term "quality of life" in their titles were identified from a recent Quality-of-Life Bibliography and from two MEDLINE searches. Articles were eligible for review only if they described or used one or more "quality-of-life" instruments.
Twenty-five articles were randomly selected from each of the three data sources.
Each article was reviewed for its compliance with two sets of criteria having several components, which are cited under "Data Synthesis."
(1) Investigators conceptually defined quality of life in only 11 (15%) of the 75 articles; identified the targeted domains in only 35 (47%); gave reasons for selecting the chosen quality-of-life instruments in only 27 (36%); and aggregated their results into a composite quality-of-life score in only 27 (38%) of 71 eligible articles. (2) No article distinguished "overall" quality of life from health-related quality of life; patients were invited to give their own separate rating for quality of life in only 13 articles (17%); and among 71 eligible articles, patients were asked to supplement the stipulated items with personal responses in only nine (13%) and to rate the importance of individual items in only six (8.5%).
Because quality of life is a uniquely personal perception, denoting the way that individual patients feel about their health status and/or nonmedical aspects of their lives, most measurements of quality of life in the medical literature seem to aim at the wrong target. Quality of life can be suitably measured only by determining the opinions of patients and by supplementing (or replacing) the instruments developed by "experts."
评估医学文献中生活质量的测量情况,并提供一种新的测量方法。
从最近的生活质量文献目录以及两次医学文献数据库(MEDLINE)检索中,找出标题中含有“生活质量”一词的英文原文文章。只有描述或使用了一种或多种“生活质量”工具的文章才有资格进行综述。
从三个数据来源中各随机选取25篇文章。
每篇文章根据两组包含多个组成部分的标准进行审查,这些标准在“数据综合”部分引用。
(1)在75篇文章中,仅有11篇(15%)的研究者从概念上对生活质量进行了定义;仅有35篇(47%)确定了目标领域;仅有27篇(36%)给出了选择所选生活质量工具的理由;在71篇符合条件的文章中,仅有27篇(38%)将其结果汇总为综合生活质量得分。(2)没有文章区分“总体”生活质量和健康相关生活质量;只有13篇文章(17%)邀请患者对生活质量给出各自独立的评分;在71篇符合条件的文章中,只有9篇(13%)要求患者用个人回答补充规定项目,只有6篇(8.5%)要求患者对各个项目的重要性进行评分。
由于生活质量是一种独特的个人认知,代表个体患者对其健康状况和/或生活中非医疗方面的感受方式,医学文献中大多数生活质量测量似乎都瞄准了错误的目标。只有通过确定患者的意见并补充(或取代)“专家”开发的工具,才能适当地测量生活质量。