亨廷顿舞蹈病健康相关生活质量问卷（HDQoL）：一种特定于疾病的健康相关生活质量衡量工具。
The Huntington's Disease health-related Quality of Life questionnaire (HDQoL): a disease-specific measure of health-related quality of life.
机构信息
Department of Psychology, School of Psychology and Clinical Language Sciences, University of Reading, Reading, UK.
出版信息
Clin Genet. 2012 Feb;81(2):117-22. doi: 10.1111/j.1399-0004.2011.01823.x.
Abstract
Huntington's disease (HD) is a genetic neurodegenerative disorder characterized by motor, cognitive and psychiatric disturbances, and yet there is no disease-specific patient-reported health-related quality of life outcome measure for patients. Our aim was to develop and validate such an instrument, i.e. the Huntington's Disease health-related Quality of Life questionnaire (HDQoL), to capture the true impact of living with this disease. Semi-structured interviews were conducted with the full spectrum of people living with HD, to form a pool of items, which were then examined in a larger sample prior to data-driven item reduction. We provide the statistical basis for the extraction of three different sets of scales from the HDQoL, and present validation and psychometric data on these scales using a sample of 152 participants living with HD. These new patient-derived scales provide promising patient-reported outcome measures for HD.
摘要
亨廷顿病（HD）是一种遗传性神经退行性疾病，其特征为运动、认知和精神障碍，但目前尚无针对该病患者的特定的患者报告的健康相关生活质量结局测量工具。我们的目的是开发和验证这样一种工具，即亨廷顿病健康相关生活质量问卷（HDQoL），以捕捉该病对生活的真实影响。对所有患有 HD 的人进行了半结构化访谈，以形成一个项目池，然后在更大的样本中进行检查，以进行数据驱动的项目减少。我们为从 HDQoL 中提取三个不同的量表提供了统计依据，并使用 152 名患有 HD 的参与者的样本提供了这些量表的验证和心理测量数据。这些新的患者衍生量表为 HD 提供了有前途的患者报告结局测量工具。
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