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从患者、护理人员和医生的角度看亨廷顿病:同一枚硬币的三个面?

Huntington's disease from the patient, caregiver and physician's perspectives: three sides of the same coin?

机构信息

Krakowska Akademia Neurologii, Krakow, Poland.

出版信息

J Neural Transm (Vienna). 2012 Nov;119(11):1361-5. doi: 10.1007/s00702-012-0787-x. Epub 2012 Mar 8.

DOI:10.1007/s00702-012-0787-x
PMID:22398875
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3477481/
Abstract

The aim of this study was to identify determinants of functional disability, patient's quality of life (QoL) and caregivers' burden in Huntington's disease (HD). Eighty HD patients participated in the study. Motor and behavioral disturbances as well as cognitive impairment were assessed using motor, behavioral and cognitive parts of the Unified Huntington Disease Rating Scale (UHDRS); Hamilton Depression Rating Scale was used to assess depression. Disability, health-related QoL and the impact of the disease on the caregivers were assessed using the following methods: UHDRS Functional Assessment Score, SF-36 Scale and Caregiver Burden Inventory. Multiple regression analysis showed that motor disturbances, cognitive impairment, apathy and disease duration were the independent predictors of disability. Depression and cognitive disturbances were the determinants of patient's QoL, while motor disturbances and depression were the predictors of the caregiver burden. Patient's disability and QoL as well as caregivers' burden should be taken into consideration while planning treatment strategy and the results of the present study show that the predictors of those treatment targets are different.

摘要

本研究旨在确定亨廷顿病(HD)患者的功能障碍、生活质量(QoL)和照顾者负担的决定因素。80 名 HD 患者参与了研究。使用统一亨廷顿病评定量表(UHDRS)的运动、行为和认知部分评估运动和行为障碍以及认知障碍;使用汉密尔顿抑郁评定量表评估抑郁。使用以下方法评估残疾、与健康相关的 QoL 和疾病对照顾者的影响:UHDRS 功能评估评分、SF-36 量表和照顾者负担量表。多元回归分析表明,运动障碍、认知障碍、淡漠和疾病持续时间是残疾的独立预测因素。抑郁和认知障碍是患者 QoL 的决定因素,而运动障碍和抑郁是照顾者负担的预测因素。在制定治疗策略时应考虑患者的残疾和 QoL 以及照顾者的负担,本研究结果表明,这些治疗目标的预测因素不同。

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本文引用的文献

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Self-awareness of motor dysfunction in patients with Huntington's disease in comparison to Parkinson's disease and cervical dystonia.亨廷顿病与帕金森病和痉挛性斜颈患者运动障碍的自我意识比较。
J Int Neuropsychol Soc. 2011 Sep;17(5):788-95. doi: 10.1017/S1355617711000725. Epub 2011 Jun 8.
2
Observing Huntington's disease: the European Huntington's Disease Network's REGISTRY.观察亨廷顿舞蹈症:欧洲亨廷顿舞蹈症网络登记处
J Neurol Neurosurg Psychiatry. 2011 Dec;82(12):1409-12. doi: 10.1136/jnnp.2010.209668. Epub 2010 Nov 19.
3
Communication and Huntington's disease: qualitative interviews and focus groups with persons with Huntington's disease, family members, and carers.沟通与亨廷顿病:对亨廷顿病患者、家庭成员和照护者的定性访谈和焦点小组。
Int J Lang Commun Disord. 2010 May-Jun;45(3):381-93. doi: 10.3109/13682820903105145.
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A comparison of mood and quality of life among people with progressive neurological illnesses and their caregivers.进行性神经疾病患者及其照料者的情绪与生活质量比较。
J Clin Psychol Med Settings. 2009 Dec;16(4):355-62. doi: 10.1007/s10880-009-9168-5. Epub 2009 Jul 29.
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Coordinated multidisciplinary care for Huntington's disease. An outpatient department.亨廷顿舞蹈症的多学科协作护理。一个门诊部。
Brain Res Bull. 2009 Oct 28;80(4-5):192-5. doi: 10.1016/j.brainresbull.2009.06.017. Epub 2009 Jul 1.
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Well-being of family caregivers of persons with late-stage Huntington's disease: lessons in stress and coping.晚期亨廷顿舞蹈症患者家庭护理者的福祉:压力与应对的经验教训
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Predictors of caregiver burden in partners of patients with Parkinson's disease.帕金森病患者配偶照顾者负担的预测因素
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