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[一项关于多发性硬化症患者生活质量构成要素的调查]

[A survey on constitutive elements of quality of life in patients with multiple sclerosis].

作者信息

Kikuchi Hiromi, Kikuchi Seiji, Ohbu Sadayoshi, Suzuki Naoto, Maezaw Masaji

机构信息

College of Nursing, Sapporo City University, Kita 11 Nishi 13, Chuo-ku, Sapporo 060 0011, Japan.

出版信息

Brain Nerve. 2007 Jun;59(6):617-22.

Abstract

BACKGROUND AND METHODS

We conducted a survey on the constitutive elements of quality of life (QOL) in patients with multiple sclerosis (MS). We recruited 20 MS patients to complete several questionnaires including Functional Assessment of MS (FAMS), Short Form 36 (SF-36), Nottingham Adjustment Scale-Japanese version (NAS-J), Sense of Coherence (SOC), and EuroQoL (EQ-5D). We also determined their Expanded Disability Status Scale (EDSS) scores, and 10 of the 20 patients answered The Schedule of Individual Quality of Life-Direct Weighting (SEIQoL-DW) by semi-structured interviews.

RESULTS

  1. We confirmed that internal consistency of FAMS was excellent. 2) Comparison analysis showed associations in most items between FAMS and SF-36. 3) Acceptance of the disorder (i. e., MS), attitude towards MS, and problem-solving ability greatly influenced QOL based on analyses of FAMS, NAS-J, SOC. 4) FAMS total score closely correlated with EQ-5D score. 5) SEIQoL-DW identified personal relations, psychological status, and execution of social roles as important constituents of QOL as well as clinical symptoms and physical status. Each scale used in the present study provided information about various constitutive element of QOL. Taking into consideration the burden placed on patients in such questionnaires as well as the result of present study, a feasible set of scales are FAMS, NAS-J.
摘要

背景与方法

我们对多发性硬化症(MS)患者生活质量(QOL)的构成要素进行了一项调查。我们招募了20名MS患者来完成几份问卷,包括MS功能评估(FAMS)、简明健康调查问卷(SF - 36)、日本版诺丁汉适应量表(NAS - J)、连贯感量表(SOC)和欧洲五维度健康量表(EQ - 5D)。我们还确定了他们的扩展残疾状态量表(EDSS)得分,并且20名患者中有10名通过半结构化访谈回答了个人生活质量直接加权量表(SEIQoL - DW)。

结果

1)我们证实FAMS的内部一致性非常好。2)比较分析显示FAMS与SF - 36在大多数项目上存在关联。3)基于对FAMS、NAS - J、SOC的分析,对疾病(即MS)的接受程度、对MS的态度和解决问题的能力对生活质量有很大影响。4)FAMS总分与EQ - 5D得分密切相关。5)SEIQoL - DW确定人际关系、心理状态和社会角色的履行以及临床症状和身体状况是生活质量的重要组成部分。本研究中使用的每个量表都提供了有关生活质量各种构成要素的信息。考虑到此类问卷给患者带来的负担以及本研究的结果,一套可行的量表是FAMS、NAS - J。

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