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亨廷顿舞蹈症患者与健康相关的生活质量:哪些因素最为关键?

Health-related quality of life in Huntington's disease: Which factors matter most?

作者信息

Ho Aileen K, Gilbert Abigail S, Mason Sarah L, Goodman Anna O, Barker Roger A

机构信息

Department of Psychology, School of Psychology and Clinical Language Sciences, University of Reading, Reading RG6 6AL, United Kingdom.

出版信息

Mov Disord. 2009 Mar 15;24(4):574-8. doi: 10.1002/mds.22412.

Abstract

The aim of this article was to determine which aspects of Huntington's disease (HD) are most important with regard to the health-related quality of life (HrQOL) of patients with this neurodegenerative disease. Seventy patients with HD participated in the study. Assessment comprised the Unified Huntington's Disease Rating Scale (UHDRS) motor, cognitive and functional capacity sections, and the Beck Depression inventory. Mental and physical HrQOL were assessed using summary scores of the SF-36. Multiple regression analyses showed that functional capacity and depressive mood were significantly associated with HrQOL, in that greater impairments in HrQOL were associated with higher levels of depressive mood and lower functional capacity. Motor symptoms and cognitive function were not found to be as closely linked with HrQOL. Therefore, it can be concluded that, depressive mood and greater functional incapacity are key factors in HrQOL for people with HD, and further longitudinal investigation will be useful to determine their utility as specific targets in intervention studies aimed at improving patient HrQOL, or whether other mediating variables. As these two factors had a similar association with the mental and physical summary scores of the SF-36, this generic HrQOL measure did not adequately capture and distinguish the true mental and physical health-related HrQOL in HD.

摘要

本文的目的是确定亨廷顿舞蹈症(HD)的哪些方面对于这种神经退行性疾病患者的健康相关生活质量(HrQOL)最为重要。70名HD患者参与了该研究。评估包括统一亨廷顿舞蹈症评定量表(UHDRS)的运动、认知和功能能力部分,以及贝克抑郁量表。使用SF-36的汇总分数评估心理和生理HrQOL。多元回归分析表明,功能能力和抑郁情绪与HrQOL显著相关,即HrQOL的更大损害与更高水平的抑郁情绪和更低的功能能力相关。未发现运动症状和认知功能与HrQOL有如此紧密的联系。因此,可以得出结论,抑郁情绪和更大的功能丧失是HD患者HrQOL的关键因素,进一步的纵向研究将有助于确定它们作为旨在改善患者HrQOL的干预研究中的特定靶点的效用,或者是否有其他中介变量。由于这两个因素与SF-36的心理和生理汇总分数有相似的关联,这种通用的HrQOL测量方法没有充分捕捉和区分HD中真正的心理和与身体健康相关的HrQOL。

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