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帕金森病患者与健康相关的生活质量:针对特定疾病量表的系统评价

Health related quality of life in Parkinson's disease: a systematic review of disease specific instruments.

作者信息

Marinus J, Ramaker C, van Hilten J J, Stiggelbout A M

机构信息

Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands.

出版信息

J Neurol Neurosurg Psychiatry. 2002 Feb;72(2):241-8. doi: 10.1136/jnnp.72.2.241.

Abstract

OBJECTIVE

To compare and contrast disease-specific quality of life instruments in Parkinson's disease and assess their clinimetric properties.

METHODS

Two reviewers independently evaluated both thoroughness and results of studies regarding clinimetric characteristics of identified scales.

RESULTS

Twenty studies were found reporting on the clinimetric properties of four scales. The content validity of the Parkinson's disease questionnaire-39 item version (PDQ-39), the Parkinson's disease quality of life questionnaire (PDQL), and the "Fragebogen Parkinson LebensQualität" (Parkinson Quality of Life questionnaire; PLQ) was adequate to good, but for the Parkinson's impact scale (PIMS) it was insufficient. Construct validity of both the PDQ-39 and the PDQL was good, but for the PLQ and the PIMS this was insufficiently evaluated. Internal consistency of all scale totals and of subscale totals of the PDQL were good, whereas for the social support subscale of the PDQ-39 and four subscales of the PLQ this was inadequate. Test-retest reliability was not evaluated for the PDQL and was adequate in the other scales. Responsiveness was partially established for the PDQ-39, and not assessed for the other scales. The number of available translations, as well as the number of studies in which these instruments were used, differed considerably.

CONCLUSIONS

The selection of an instrument partially depends on the goal of the study. In many situations however, the PDQ-39 will probably be the most appropriate HRQoL instrument. The PDQL may be considered as an alternative, whereas the PLQ may be considered in studies involving German speaking patients with Parkinson's disease. Use of the PIMS should be considered only as a means of identifying areas of potential problems.

摘要

目的

比较和对比帕金森病中特定疾病的生活质量测评工具,并评估其测量学特性。

方法

两名评审员独立评估关于已识别量表测量学特征的研究的全面性和结果。

结果

发现有20项研究报告了4种量表的测量学特性。帕金森病问卷39项版本(PDQ - 39)、帕金森病生活质量问卷(PDQL)和“Fragebogen Parkinson LebensQualität”(帕金森生活质量问卷;PLQ)的内容效度为中等至良好,但帕金森病影响量表(PIMS)的内容效度不足。PDQ - 39和PDQL的结构效度良好,但PLQ和PIMS的结构效度评估不足。PDQL所有量表总分及子量表总分的内部一致性良好,而PDQ - 39的社会支持子量表和PLQ的4个子量表的内部一致性不足。未对PDQL进行重测信度评估,其他量表的重测信度足够。部分确定了PDQ - 39的反应度,其他量表未进行评估。可用翻译的数量以及使用这些工具的研究数量差异很大。

结论

工具的选择部分取决于研究目的。然而,在许多情况下,PDQ - 39可能是最合适的健康相关生活质量工具。PDQL可被视为一种替代工具,而PLQ可在涉及说德语的帕金森病患者的研究中考虑使用。仅应将PIMS用作识别潜在问题领域的一种手段。

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