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多发性硬化症的疾病负担:第二部分:生活质量。加拿大疾病负担研究小组。

Burden of illness of multiple sclerosis: Part II: Quality of life. The Canadian Burden of Illness Study Group.

出版信息

Can J Neurol Sci. 1998 Feb;25(1):31-8.

PMID:9532278
Abstract

OBJECTIVE

To measure the quality of life (QoL) of multiple sclerosis (MS) patients in Canada using a generic QoL instrument, the SF-36.

METHODS

QoL was assessed in 198 MS patients, recruited from 14 MS Clinics in Canada, and stratified into three levels of disease severity, based on their Expanded Disability Status Scale (EDSS) score. Statistical tests were used to compare QoL scores between severity groups and to identify possible relationships between QoL and patient sociodemographic, clinical and economic parameters.

RESULTS

QoL scores for all eight scales of the SF-36 were substantially reduced early in the disease. Compared to the normal population, QoL scores for patients with mild MS were on average 30% lower for all SF-36 scales. With EDSS progression a statistically significant decrease in three of the SF-36 domains (physical function, role-physical, and social function) was observed. There were no significant correlations between patient parameters considered and QoL scores.

CONCLUSIONS

QoL of MS patients collapses early in the disease. With EDSS progression, physical functioning scales show further decreases in QoL. The absence of further changes in the mental SF-36 scales may be a reflection of patient adaptation to the disease and/or effective support care. However, the SF-36 instrument may be insensitive to some of the QoL changes in MS and a disease-specific instrument may provide additional information on QoL, particularly at later stages of the disease. This study provides a basis for future research aimed at improving management of MS.

摘要

目的

使用通用生活质量工具SF-36测量加拿大多发性硬化症(MS)患者的生活质量(QoL)。

方法

对从加拿大14个MS诊所招募的198例MS患者进行生活质量评估,并根据其扩展残疾状态量表(EDSS)评分将其分为三个疾病严重程度级别。使用统计测试比较严重程度组之间的生活质量评分,并确定生活质量与患者社会人口统计学、临床和经济参数之间的可能关系。

结果

SF-36所有八个量表的生活质量评分在疾病早期均大幅降低。与正常人群相比,轻度MS患者在所有SF-36量表上的生活质量评分平均低30%。随着EDSS进展,观察到SF-36三个领域(身体功能、角色-身体和社会功能)有统计学意义的下降。所考虑的患者参数与生活质量评分之间无显著相关性。

结论

MS患者的生活质量在疾病早期就下降。随着EDSS进展,身体功能量表显示生活质量进一步下降。SF-36心理量表没有进一步变化可能反映了患者对疾病的适应和/或有效的支持性护理。然而,SF-36工具可能对MS的一些生活质量变化不敏感,特定疾病的工具可能提供有关生活质量的更多信息,特别是在疾病后期。本研究为未来旨在改善MS管理的研究提供了基础。

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