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[《国际多发性硬化症生活质量问卷》的法语版验证]

[French validation of the Multiple Sclerosis International Quality of Life Questionnaire].

作者信息

Baumstarck-Barrau K, Pelletier J, Simeoni M-C, Auquier P

机构信息

Unité d'Aide Méthodologique à la Recherche Clinique, Laboratoire de Santé Publique, DRC, APHM, 27 Boulevard Jean-Moulin, 13385 Marseille cedex 5, France.

出版信息

Rev Neurol (Paris). 2011 Jun-Jul;167(6-7):511-21. doi: 10.1016/j.neurol.2010.10.008. Epub 2011 Mar 21.

Abstract

INTRODUCTION

Health-related quality of life (HRQL) measurements have become an important outcome both for population health assessment and for evaluating treatments and care management. HRQL indicators require completion of a well-validated questionnaire. Few specific questionnaires are available for French multiple sclerosis (MS) patients. The Multiple Sclerosis International Quality of Life questionnaire (MusiQoL), a self-administered and multidimensional questionnaire, was co-developed and validated in 17 countries, including France. We report the main results of the French clinical validity of this instrument.

METHODS

The French patients were recruited between January 2004 and February 2005. The main inclusion criteria were: diagnosis of MS according to McDonald criteria, age over 18 years, having given informed consent. The self-administered survey materials that were completed by the patients included the MusiQoL, the generic HRQL questionnaire SF36, and one checklist of 14 MS-specific symptoms reported by the patients. MusiQoL comprises 31 items describing nine dimensions: activity of daily living (eight items), psychological well-being (four), symptoms (three), friends relationships (four), family relationships (three), satisfaction with health care (three), sentimental and sexual life (two), coping (two), and rejection (two). A global index score is computed. Patients were evaluated at inclusion (T0), and retested 21±7 days later (T1). At T0, an experienced neurologist collected sociodemographic data, clinical history related or unrelated to the MS condition, treatments. At T1, change in the patient's health status from T0 was reported.

RESULTS

The analyses were performed with data from 179 subjects. The mean patient age was 44.1 years (SD: 11.5); there were 120 women and 59 men, 58.1% were unemployed, 13.6% had a tertiary educational level. MS clinical forms were 69 relapsing-remitting, 47 secondary-progressive, 37 primary-progressive, and nine clinically isolated syndrome. The EDSS median was 4.5 (25-75(th) percentiles: 2.5-6.0). The final French version showed satisfactory psychometric properties (external validity, internal consistency, reliability, reproducibility, and acceptability).

CONCLUSION

The availability of a reliable and valid French version of MusiQoL, a self-administered and multidimensional questionnaire, co-developed in different countries, enables evaluation of QoL in French MS patients that are eligible for international multicenter studies.

摘要

引言

健康相关生活质量(HRQL)测量已成为人口健康评估以及评估治疗和护理管理的一项重要指标。HRQL指标需要通过一份经过充分验证的问卷来完成。针对法国多发性硬化症(MS)患者的特定问卷很少。国际多发性硬化症生活质量问卷(MusiQoL)是一份自行填写的多维问卷,在包括法国在内的17个国家共同开发并验证。我们报告了该工具在法国的临床效度的主要结果。

方法

法国患者于2004年1月至2005年2月招募。主要纳入标准为:根据麦克唐纳标准诊断为MS,年龄超过18岁,已签署知情同意书。患者填写的自行填写的调查问卷材料包括MusiQoL、通用HRQL问卷SF36以及患者报告的14种MS特异性症状清单。MusiQoL由31个项目组成,描述九个维度:日常生活活动(八个项目)、心理健康(四个)、症状(三个)、朋友关系(四个)、家庭关系(三个)、对医疗保健的满意度(三个)、情感和性生活(两个)、应对(两个)以及排斥(两个)。计算出一个总体指数得分。患者在纳入时(T0)进行评估,并在21±7天后重新测试(T1)。在T0时,一位经验丰富的神经科医生收集社会人口统计学数据、与MS病情相关或无关的临床病史、治疗情况。在T1时,报告患者自T0以来健康状况的变化。

结果

对179名受试者的数据进行了分析。患者平均年龄为44.1岁(标准差:11.5);有120名女性和59名男性,58.1%失业,13.6%具有高等教育水平。MS临床类型为69例复发缓解型、47例继发进展型、37例原发进展型和9例临床孤立综合征。EDSS中位数为4.5(第25 - 75百分位数:2.5 - 6.0)。最终的法语版本显示出令人满意的心理测量特性(外部效度、内部一致性、可靠性、可重复性和可接受性)。

结论

不同国家共同开发的一份可靠且有效的自行填写的多维问卷——法语版MusiQoL的可得性,使得能够对符合国际多中心研究条件的法国MS患者的生活质量进行评估。

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