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首页> 外文期刊>Movement disorders >Quality of Life in Huntington's Disease: Critique and Recommendations for Measures Assessing Patient Health‐Related Quality of Life and Caregiver Quality of Life
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Quality of Life in Huntington's Disease: Critique and Recommendations for Measures Assessing Patient Health‐Related Quality of Life and Caregiver Quality of Life

机译：亨廷顿疾病的生活质量：评估患者健康相关生活质量和照顾者生活质量的批评和建议

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ABSTRACT The compromise of quality of life in Huntington's disease is a major issue, both for individuals with the disease as well as for their caregivers. The International Parkinson and Movement Disorder Society commissioned a review of the use and clinimetric validation status of measures used in Huntington's disease to assess aspects related with quality of life and to make recommendations on their use following standardized criteria. We included both patient‐centered measures (patient health‐related quality‐of‐life measures) and caregiver‐centered measures (caregiver quality‐of‐life measures). After conducting a systematic literature search, we included 12 measures of patient health‐related quality of life and 2 measures of caregiver quality of life. Regarding patient‐centered measures, the Medical Outcomes Study 36‐Item Short‐Form Health Survey is “recommended” as a generic assessment of health‐related quality of life in patients with Huntington's disease. The 12‐Item Short Form Health Survey, the Sickness Impact Profile, the 12‐item World Health Organization Disability Assessment Schedule, and the Huntington's Disease Health‐Related Quality of Life questionnaire are “suggested.” No caregiver‐centered quality‐of‐life measure obtained a “recommended” status. The Alzheimer's Carer's Quality of Life Inventory and the Huntington's Disease Quality of Life Battery for Carers are “suggested.” Recognizing that the assessment of patient health‐related quality of life can be challenging in Huntington's disease, as patients may lack insight and there is insufficient clinimetric testing of these scales, the committee concluded that further validation of currently available health‐related quality‐of‐life measures should be undertaken, namely, those Huntington's disease–specific health‐related quality‐of‐life measures that have recently been reported and used. ? 2018 International Parkinson and Movement Disorder Society
机译：摘要亨廷顿氏病的生活质量妥协是一种主要问题，适用于疾病的个体以及他们的照顾者。国际帕金森和运动障碍社会委托亨廷顿疾病措施的使用和关联验证状态审查，以评估与生活质量相关的方面，并提出关于其在标准化标准之后使用的建议。我们包括患者中心措施（患者与患者有关的生活质量措施）和可照顾者为中心的措施（护理人员的寿命措施）。在进行系统的文献搜索之后，我们包括12种患者健康有关的生活质量和2个护理人员生活质量的措施。关于以患者为中心的措施，医学结果研究36项短型健康调查是“推荐”作为亨廷顿疾病患者对健康相关生活质量的通用评估。 12项短型健康调查，疾病影响概况，12件世界卫生组织残疾评估表，以及亨廷顿的疾病相关的生活质量问卷调查问卷。“没有照顾者中心的生活质量措施获得了“推荐的”状态。 Alzheimer的照顾者的生活质量库存和Huntington为护理人员的生活电池的疾病质量是“建议的。”认识到，亨廷顿疾病的患者与患者有关的生活质量评估可能挑战，因为患者可能缺乏见解，并且对这些秤的关联测试不足，委员会得出结论，进一步验证目前有效的健康相关质量 - 应该进行寿命措施，即亨廷顿的疾病特异性健康相关的寿命措施，最近报告和使用。还2018国际帕金森和运动障碍协会

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