Pain Management Research Institute, Royal North Shore Hospital, Reserve Road, St Leonards, NSW, 2065, Australia.
Faculty of Science, School of Psychology, University of Sydney, Sydney, NSW, Australia.
Qual Life Res. 2021 Aug;30(8):2109-2121. doi: 10.1007/s11136-021-02826-0. Epub 2021 Apr 1.
To ensure clarity in communication in the field of quality of life research, and meaningful use of 'quality of life' as a research outcome, requires two things: awareness that there is a range of conceptualisations and definitions of 'quality of life', and for any particular study, consistency between the way the term is defined and operationalised in that setting. We aimed to identify how frequently research articles described (HR)QOL as a construct of interest, how frequently they referred to "patient-reported outcome (measures)", which patient-reported outcome measures were used, and how (HR)QOL was defined.
We reviewed all Quality of Life Research articles published in 2017 and recorded whether they described health-related quality of life or quality of life as constructs of interest, and/or mentioned the term(s) patient-reported outcome (measures). We recorded definitions of (HR)QOL stated and questionnaires used. We classified articles according to constructs assessed and instruments used, and examined whether articles citing the same definition used the same questionnaires.
We reviewed 300 articles; 65% stated that (HR)QOL was a construct of interest, 27% mentioned patient-reported outcome (measures), and 20% mentioned neither. Fifty-one articles provided definitions of (HR)QOL, citing 66 sources, with 11 definitions cited more than once. PROMIS, SF, EQ-5D, and EORTC instruments were the most commonly used. The only definition and questionnaire consistently used together were the WHO definitions/instruments.
These results demonstrate considerable heterogeneity in the definition and operationalisation of (HR)QOL, between and within studies. This limits meaningful interpretation of (HR)QOL scores and complicates literature searches. Investigators should define constructs and select instruments aligned with their definitions.
为了确保在生活质量研究领域的沟通清晰，并对“生活质量”作为研究结果的有意义使用，需要两件事：意识到“生活质量”有一系列概念和定义，并且对于任何特定的研究，在该环境中定义和操作术语的方式保持一致。我们旨在确定研究文章描述（HR）QOL 作为感兴趣的构念的频率，他们提到“患者报告的结果（措施）”的频率，使用了哪些患者报告的结果测量，以及（HR）QOL 的定义方式。
我们回顾了 2017 年发表的所有《生活质量研究》文章，并记录了它们是否描述了健康相关生活质量或生活质量作为感兴趣的构念，以及/或提到了术语“患者报告的结果（措施）”。我们记录了（HR）QOL 的陈述和使用的问卷的定义。我们根据评估的构念和使用的工具对文章进行分类，并检查了引用相同定义的文章是否使用了相同的问卷。
我们审查了 300 篇文章；65%的文章指出（HR）QOL 是一个感兴趣的构念，27%的文章提到了患者报告的结果（措施），20%的文章未提及。51 篇文章提供了（HR）QOL 的定义，引用了 66 个来源，有 11 个定义被引用了不止一次。PROMIS、SF、EQ-5D 和 EORTC 工具是最常用的。唯一一致使用的定义和问卷是世卫组织的定义/工具。
这些结果表明，（HR）QOL 的定义和操作在研究之间和研究内部存在相当大的异质性。这限制了（HR）QOL 评分的有意义解释，并使文献检索复杂化。研究人员应根据其定义定义构念并选择工具。
