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[MusiQol:一项调查多发性硬化症患者生活质量的国际问卷:国际比较中德国亚人群的验证结果]

[MusiQol: international questionnaire investigating quality of life in multiple sclerosis: validation results for the German subpopulation in an international comparison].

作者信息

Flachenecker P, Vogel U, Simeoni M C, Auquier P, Rieckmann P

机构信息

Neurologisches Rehabilitationszentrum Quellenhof, Kuranlagenallee 2, 75323 Bad Wildbad, Deutschland.

出版信息

Nervenarzt. 2011 Oct;82(10):1281-9. doi: 10.1007/s00115-011-3276-9.

Abstract

BACKGROUND

The existing health-related quality of life questionnaires on multiple sclerosis (MS) only partially reflect the patient's point of view on the reduction of activities of daily living. Their development and validation was not performed in different languages. That is what prompted the development of the Multiple Sclerosis International Quality of Life (MusiQoL) Questionnaire as an international multidimensional measurement instrument. This paper presents this new development and the results of the German subgroup versus the total international sample.

PATIENTS AND METHODS

A total of 1,992 MS patients from 15 countries, including 209 German patients, took part in the study between January 2004 and February 2005. The patients took the MusiQoL survey at baseline and at 21±7 days as well as completing a symptom-related checklist and the SF-36 short form survey. Demographics, history and MS classification data were also generated. Reproducibility, sensitivity, convergent and discriminant validity were analysed.

RESULTS

Convergent and discriminant validity and reproducibility were satisfactory for all dimensions of the MusiQoL. The dimensional scores correlated moderately but significantly with the SF-36 scores, but showed a discriminant validity in terms of gender, socioeconomic status and health status that was more pronounced in the overall population than in the German subpopulation. The highest correlations were observed between the MusiQoL dimension of activities of daily living and the Expanded Disability Status Scale (EDSS).

CONCLUSION

The results of this study confirm the validity and reliability of MusiQoL as an instrument for measuring the quality of life of German and international MS patients.

摘要

背景

现有的关于多发性硬化症(MS)的健康相关生活质量问卷仅部分反映了患者对日常生活活动减少的看法。这些问卷的开发和验证并非使用不同语言进行。这促使开发了多发性硬化症国际生活质量(MusiQoL)问卷,作为一种国际多维测量工具。本文介绍了这一最新进展以及德国亚组与国际总样本的结果。

患者与方法

2004年1月至2005年2月期间,共有来自15个国家的1992名MS患者参与了该研究,其中包括209名德国患者。患者在基线时以及21±7天时进行了MusiQoL调查,并完成了一份症状相关清单和SF-36简表调查。还收集了人口统计学、病史和MS分类数据。分析了可重复性、敏感性、收敛效度和区分效度。

结果

MusiQoL所有维度的收敛效度、区分效度和可重复性均令人满意。维度得分与SF-36得分呈中度但显著的相关性,但在性别、社会经济地位和健康状况方面显示出区分效度,在总体人群中比在德国亚组中更为明显。在日常生活活动的MusiQoL维度与扩展残疾状态量表(EDSS)之间观察到最高的相关性。

结论

本研究结果证实了MusiQoL作为测量德国和国际MS患者生活质量工具的有效性和可靠性。

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