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本文引用的文献

1
Early Detection of Huntington Disease.亨廷顿病的早期检测
Future Neurol. 2010 Jan;5(1). doi: 10.2217/fnl.09.78.
2
Biological and clinical changes in premanifest and early stage Huntington's disease in the TRACK-HD study: the 12-month longitudinal analysis.TRACK-HD 研究中在前期和早期亨廷顿病中的生物学和临床变化:12 个月的纵向分析。
Lancet Neurol. 2011 Jan;10(1):31-42. doi: 10.1016/S1474-4422(10)70276-3. Epub 2010 Dec 2.
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Neurocognitive signs in prodromal Huntington disease.前驱期亨廷顿病的神经认知征象。
Neuropsychology. 2011 Jan;25(1):1-14. doi: 10.1037/a0020937.
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Mild cognitive impairment in prediagnosed Huntington disease.亨廷顿病患者的轻度认知障碍。
Neurology. 2010 Aug 10;75(6):500-7. doi: 10.1212/WNL.0b013e3181eccfa2. Epub 2010 Jul 7.
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"Frontal" behaviors before the diagnosis of Huntington's disease and their relationship to markers of disease progression: evidence of early lack of awareness.亨廷顿病诊断前的“额叶”行为及其与疾病进展标志物的关系:早期缺乏意识的证据。
J Neuropsychiatry Clin Neurosci. 2010 Spring;22(2):196-207. doi: 10.1176/jnp.2010.22.2.196.
6
Couples' attributions for work function changes in prodromal Huntington disease.前驱期亨廷顿舞蹈病患者工作功能变化的夫妻归因
J Genet Couns. 2010 Aug;19(4):343-52. doi: 10.1007/s10897-010-9294-0. Epub 2010 Mar 23.
7
Motor abnormalities in premanifest persons with Huntington's disease: the PREDICT-HD study.亨廷顿舞蹈病临床前患者的运动异常:PREDICT-HD研究
Mov Disord. 2009 Sep 15;24(12):1763-72. doi: 10.1002/mds.22601.
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Health-related quality of life in Huntington's disease: Which factors matter most?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?
Mov Disord. 2009 Mar 15;24(4):574-8. doi: 10.1002/mds.22412.
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Parents of children with cystic fibrosis: how they hope, cope and despair.患有囊性纤维化儿童的父母:他们如何怀有希望、应对困难和陷入绝望。
Child Care Health Dev. 2008 May;34(3):344-54. doi: 10.1111/j.1365-2214.2007.00804.x. Epub 2008 Feb 22.
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A developmental-contextual model of couples coping with chronic illness across the adult life span.一个关于夫妻在成年期应对慢性病的发展情境模型。
Psychol Bull. 2007 Nov;133(6):920-54. doi: 10.1037/0033-2909.133.6.920.

前驱期亨廷顿病患者配偶的应对方式:一项混合方法研究。

Couples' coping in prodromal Huntington disease: a mixed methods study.

作者信息

Downing Nancy R, Williams Janet K, Leserman Anne L, Paulsen Jane S

机构信息

The University of Iowa College of Nursing, Iowa City, 52242, USA.

出版信息

J Genet Couns. 2012 Oct;21(5):662-70. doi: 10.1007/s10897-012-9480-3. Epub 2012 Jan 26.

DOI:10.1007/s10897-012-9480-3
PMID:22278219
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3568751/
Abstract

Huntington disease (HD) includes a prodromal phase with behavioral, cognitive, and motor function decline occurring up to 15 years prior to diagnosis. This study used mixed methods to examine how people in the prodromal phase and their companions coped with noticed changes. Twenty-three couples completed a semi-structured interview and Brief COPE. Participants with prodromal HD used acceptance, emotional support, and planning most frequently; companions used acceptance, planning, and active coping. Least frequently used coping strategies for each were denial, behavioral disengagement, and substance use. Qualitative interviews revealed coping strategies not included in the Brief COPE. Participants with prodromal HD used prescription medications, coping as a couple, hope, and self-monitoring; companions used hope and helping their partners. Many of the coping procedures were rated as effective, especially when changes were not severe. Couples may benefit from counseling that emphasizes using active coping strategies for changes that can be compensated for and acceptance for changes that cannot in prodromal HD. Findings from this study may be helpful for counseling patients and significant others facing other neurodegenerative conditions with prodromal or early phases, such as Alzheimer disease and Parkinson disease.

摘要

亨廷顿舞蹈症(HD)包括一个前驱期,在诊断前长达15年就会出现行为、认知和运动功能衰退。本研究采用混合方法来探究前驱期患者及其伴侣如何应对所察觉到的变化。23对夫妇完成了一次半结构化访谈和《简易应对方式问卷》。前驱期HD患者最常使用的应对方式是接受、情感支持和规划;伴侣则使用接受、规划和积极应对。双方最少使用的应对策略都是否认、行为脱离和物质使用。定性访谈揭示了《简易应对方式问卷》未涵盖的应对策略。前驱期HD患者使用处方药、夫妻共同应对、抱有希望和自我监测;伴侣则使用希望和帮助伴侣。许多应对措施被评为有效,尤其是在变化不严重时。对于前驱期HD中那些可以弥补的变化,强调使用积极应对策略;对于无法弥补的变化,则强调接受,夫妻双方可能会从这样的咨询中受益。本研究结果可能有助于为面临其他具有前驱期或早期阶段的神经退行性疾病(如阿尔茨海默病和帕金森病)的患者及其重要他人提供咨询服务。