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狼疮 QoL-中国评估工具在中国系统性红斑狼疮患者健康相关生活质量评估中的有效性。

Validity of LupusQoL-China for the assessment of health related quality of life in Chinese patients with systemic lupus erythematosus.

机构信息

Department of Rheumatology, Ren Ji Hospital, School of Medicine, Shanghai Jiao Tong University, Shanghai, China.

出版信息

PLoS One. 2013 May 23;8(5):e63795. doi: 10.1371/journal.pone.0063795. Print 2013.

Abstract

OBJECTIVES

To adapt and assess the validity and reliability of LupusQoL for use in Chinese patients with systemic lupus erythematosus (SLE).

METHODS

Debriefing interviews of subjects with SLE guided the language modifications of the tool. The process of adaptation proceeded according to the guideline and pre-testing results of LupusQoL-China. 220 SLE patients completed LupusQoL-China and a generic preference-based measurement of health EuroQoL scale (EQ-5D), and 20 patients repeated them after 2 weeks. Internal consistency (ICR) and test-retest (TRT) reliability, convergent and discriminant validity were examined. Factor analysis and Rasch analysis were performed.

RESULTS

The mean (SD) age of the 208 subjects with SLE was 33.93 (± 9.19) years. ICR and TRT of the eight domains ranged from 0.811 to 0.965 and 0.836 to 0.974, respectively. The LupusQoL-China domains demonstrated substantial evidence of construct validity when compared with equivalent domains on the EQ-5D (physical health and usual activities r = -0.63, pain and pain/discomfort r = -0.778, emotional health and anxiety/depression r = -0.761, planning and usual activities r = -0.560). Most LupusQoL-China domains could discriminate patients with varied disease activities and end-organ damage (according to SELENA-SLEDAI and SLICC-DI). The principal component analysis revealed six factors, and confirmatory factor analysis result of which is similar to eight factors model.

CONCLUSIONS

These results provide evidence that the LupusQoL-China is valid as a disease-specific HRQoL assessment tool for Chinese patients with SLE.

摘要

目的

对系统性红斑狼疮患者使用的 LupusQoL 进行适应性改编和评估,以评估其在简体中文中的有效性和可靠性。

方法

对系统性红斑狼疮患者进行深入访谈,指导工具的语言修改。适应性改编过程按照 LupusQoL-China 的指导原则和预测试结果进行。220 名系统性红斑狼疮患者完成了 LupusQoL-China 和通用健康偏好测量工具 EuroQoL 量表(EQ-5D),其中 20 名患者在 2 周后重复进行了测试。评估了内部一致性(ICR)和重测信度(TRT)、收敛和判别有效性。进行了因子分析和 Rasch 分析。

结果

208 例系统性红斑狼疮患者的平均(SD)年龄为 33.93(±9.19)岁。八个领域的 ICR 和 TRT 范围分别为 0.811 至 0.965 和 0.836 至 0.974。与 EQ-5D 中等效领域相比,LupusQoL-China 各领域在物理健康和常规活动(r=-0.63)、疼痛和疼痛/不适(r=-0.778)、情绪健康和焦虑/抑郁(r=-0.761)、计划和常规活动(r=-0.560)方面具有实质性的结构有效性证据。大多数 LupusQoL-China 领域可以区分疾病活动度和终末器官损伤不同的患者(根据 SELENA-SLEDAI 和 SLICC-DI)。主成分分析显示有六个因素,验证性因子分析的结果与八个因素模型相似。

结论

这些结果表明,LupusQoL-China 作为一种针对中国系统性红斑狼疮患者的特定疾病的 HRQoL 评估工具具有有效性。

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