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波兰多发性硬化症患者的生活质量。

Quality of life in Polish patients with multiple sclerosis.

机构信息

Department of Paediatric Neurology, Medical University in Lublin, Lublin, Poland.

Department of Neurology, Medical University of Bialystok, Bialystok, Poland.

出版信息

Adv Med Sci. 2014 Mar;59(1):34-8. doi: 10.1016/j.advms.2013.07.002. Epub 2014 Mar 16.

Abstract

PURPOSE

This study is a pilot evaluation of the quality of life (QoL) in Polish patients with multiple sclerosis (MS).

MATERIAL/METHODS: Data from 21 centers in Poland were collected from May 2008 to January 2009. QoL was assessed using the questionnaire Euro Quality of Life (EQ-5D), with Polish population norms. Demographic profile of patients, duration/form/relapsing activity of the disease, disability and comorbidity were also analyzed.

RESULTS

Data from 3521 patients (F/M ratio 2.4:1) were collected. The average EQ-5D index was 0.8 ± 0.27 and the mean score in a visual analog scale (EQ-VAS) was 65.6 ± 21.5. There was a highly significant positive correlation between both indices (r=0.7334, p<0.0001). The mean patient age was 40.7 years (11.2-92.3 years) and disease duration was 10.3 ± 8.8 years (0.04-53 years). 74.2% of subjects had relapsing-remitting form of MS, while 17.2% were classified as secondary progressive and 8.6% as primary progressive. In the group of relapsing-remitting MS subjects there were 2.5% patients with "benign MS". The average degree of disability on EDSS scale was 3.6 ± 2.2, while disability ≥6 was observed in 20.3% of patients. Most patients did not have other diseases besides MS.

CONCLUSIONS

This is the first large study of QoL in patients with MS in Poland (approximately 18% of all patients). Our results confirm a reduction in QoL compared with the general population. Further studies are indicated to identify the modifiable risk factors (e.g. type of treatment) that may affect QoL.

摘要

目的

本研究旨在评估波兰多发性硬化症(MS)患者的生活质量(QoL)。

材料/方法:2008 年 5 月至 2009 年 1 月,从波兰的 21 个中心收集数据。使用问卷调查欧洲生活质量(EQ-5D)评估 QoL,并采用波兰人群的正常值。还分析了患者的人口统计学特征、疾病的持续时间/形式/复发活动、残疾和合并症。

结果

共收集了 3521 名患者(男女比例 2.4:1)的数据。平均 EQ-5D 指数为 0.8 ± 0.27,视觉模拟量表(EQ-VAS)的平均得分为 65.6 ± 21.5。这两个指数之间存在高度显著的正相关(r=0.7334,p<0.0001)。患者平均年龄为 40.7 岁(11.2-92.3 岁),疾病持续时间为 10.3 ± 8.8 年(0.04-53 年)。74.2%的患者为复发缓解型 MS,17.2%为继发进展型,8.6%为原发进展型。在复发缓解型 MS 患者中,有 2.5%的患者为“良性 MS”。EDSS 量表上的平均残疾程度为 3.6 ± 2.2,而残疾≥6 的患者占 20.3%。大多数患者除 MS 外没有其他疾病。

结论

这是波兰首次对多发性硬化症患者进行 QoL 的大型研究(约占所有患者的 18%)。我们的结果证实,与普通人群相比,QoL 下降。需要进一步研究确定可能影响 QoL 的可改变风险因素(例如治疗类型)。

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