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捕捉患者体验:生活质量评估是否需要一种新的测量类别?

Capturing patient experience: does quality-of-life appraisal entail a new class of measurement?

作者信息

Schwartz Carolyn E, Stark Roland B, Rapkin Bruce D

机构信息

DeltaQuest Foundation, Inc., 31 Mitchell Road, Concord, MA, 01742, USA.

Departments of Medicine and Orthopaedic Surgery, Tufts University Medical School, Boston, MA, USA.

出版信息

J Patient Rep Outcomes. 2020 Oct 27;4(1):85. doi: 10.1186/s41687-020-00254-1.

DOI:10.1186/s41687-020-00254-1
PMID:33108540
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7591682/
Abstract

BACKGROUND

Two decades of research on quality-of-life (QOL) appraisal have demonstrated links between patient experience and health outcomes and have accounted for both intra-individual change and inter-individual differences in a wide range of research contexts. The present work investigates patterns across diagnostic and demographic groupings to demonstrate how population-specific circumstances drive the structure of QOL appraisal.

METHODS

This secondary analysis (N = 6448) utilized data from six patient groups: spine surgery, multiple sclerosis, heterogeneous chronically ill, heterogeneous cancer, bladder cancer, and human immunodeficiency virus (HIV). We explored patterns of inter-item correlation across patient samples, using items from the Standards of Comparison and Sampling of Experience subsections of the QOL Appraisal Profile v1 and v2. Similar matrices were compared by demographic characteristics.

RESULTS

Patterns of inter-item correlations for Standards of Comparison items varied sharply across disease groups and racial groups while being similar across age, gender, and education levels. Inter-item correlation matrices for Sampling of Experience items revealed marked differences among disease groups and educational and racial categories but were similar across age and gender groups.

CONCLUSIONS

Appraisal parameters showed evidence of shared and unique aspects across samples and circumstances, findings which make sense in light of sample differences in health status and demographic influences. Tools to assess patient experience and meaning may be best understood as idiometric instruments. We discuss their distinctions from psychometric and clinimetric tools at theoretical, statistical, and applied levels.

摘要

背景

二十年来对生活质量(QOL)评估的研究表明,患者体验与健康结果之间存在联系,并在广泛的研究背景中解释了个体内部变化和个体间差异。本研究调查了不同诊断和人口统计学分组的模式,以展示特定人群的情况如何驱动生活质量评估的结构。

方法

这项二次分析(N = 6448)使用了来自六个患者群体的数据:脊柱手术、多发性硬化症、异质性慢性病、异质性癌症、膀胱癌和人类免疫缺陷病毒(HIV)。我们使用生活质量评估概况v1和v2中比较标准和体验抽样子部分的项目,探索了患者样本间项目间相关性的模式。通过人口统计学特征比较了相似的矩阵。

结果

比较标准项目的项目间相关性模式在疾病组和种族组之间差异很大,而在年龄、性别和教育水平之间相似。体验抽样项目的项目间相关矩阵显示,疾病组、教育和种族类别之间存在显著差异,但在年龄和性别组之间相似。

结论

评估参数显示出样本和环境中共同和独特方面的证据,鉴于健康状况和人口统计学影响的样本差异,这些发现是有意义的。评估患者体验和意义的工具可能最好被理解为特质测量工具。我们在理论、统计和应用层面讨论了它们与心理测量和临床测量工具的区别。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3c0e/7591682/05f2cabc4f82/41687_2020_254_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3c0e/7591682/afce2ca661ea/41687_2020_254_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3c0e/7591682/05f2cabc4f82/41687_2020_254_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3c0e/7591682/afce2ca661ea/41687_2020_254_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3c0e/7591682/05f2cabc4f82/41687_2020_254_Fig2_HTML.jpg

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