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帕金森病相关生存质量量表:评价与建议。

Health-related quality-of-life scales in Parkinson's disease: critique and recommendations.

机构信息

Alzheimer Disease Research Unit, CIEN Foundation-Reina Sofia Foundation, Alzheimer Center Reina Sofia Foundation, Carlos III Institute of Health, Madrid, Spain.

出版信息

Mov Disord. 2011 Nov;26(13):2371-80. doi: 10.1002/mds.23834. Epub 2011 Jul 6.

Abstract

Health-related quality of life is an important patient-reported outcome used in intervention trials and for monitoring the consequences of health status on physical, mental, and social domains. Parkinson's disease is a complex disorder that strongly affects patients' quality of life. Several health-related quality of life tools have been used in Parkinson's disease. A Movement Disorder Society Task Force was commissioned to rate the psychometric quality of available health-related quality of life scales as applied to Parkinson's disease. Following the methodology adopted by previous work of the Movement Disorder Society Task Force, a review of generic and specific health-related quality of life scales applied in studies on Parkinson's disease was completed. Considering the scales from 3 perspectives-use in Parkinson's disease, use by multiple research groups, and clinimetric properties-a final classification as "recommended," "suggested," or "listed" was applied to each reviewed instrument. Four generic scales (EuroQoL, Nottingham Health Profile, 36-Item Short-Form Health Survey, and Sickness Impact Profile) and 5 specific scales (39-Item Parkinson's Disease Questionnaire, Parkinson's Disease Questionnaire Short Form, Parkinson's Disease Quality of Life Questionnaire, Parkinson's Impact Scale, and Scales for Outcomes in Parkinson's Disease-Psychosocial) reached the level of "recommended." The 39-item Parkinson's Disease Questionnaire is the most thoroughly tested and applied questionnaire. Three other generic measures (Quality of Life Questionnaire 15D, Schedule for the Evaluation of Individual Quality of Life-Direct Weighting, and World Health Organization Quality of Life Assessment Short Version) and the specific Parkinson's Disease Quality of Life Scale are "suggested." With a little additional effort in completing the stipulated requirements, they could reach the "recommended" level. At present there is a wide variety of health-related quality of life measures for application in the Parkinson's disease setting, and the task force does not recommend the development of a new scale. Selection of the most appropriate instrument for a particular objective requires consideration of the characteristics of each scale and the goals of the assessment.

摘要

健康相关生活质量是干预试验和监测健康状况对身体、心理和社会领域影响的重要患者报告结局。帕金森病是一种复杂的疾病,严重影响患者的生活质量。已经有几种健康相关生活质量工具用于帕金森病。一个运动障碍学会特别工作组被委托对可用于帕金森病的健康相关生活质量量表的心理测量学质量进行评级。遵循运动障碍学会特别工作组之前的工作方法,对应用于帕金森病研究的通用和特定健康相关生活质量量表进行了审查。考虑到量表在帕金森病中的使用情况、多个研究小组的使用情况以及临床特性这 3 个方面,对每个审查的工具最终进行了“推荐”“建议”或“列入”的分类。四种通用量表(EuroQoL、诺丁汉健康概况量表、36 项简明健康调查量表和疾病影响量表)和五种特定量表(39 项帕金森病问卷、帕金森病问卷简表、帕金森病生活质量问卷、帕金森病影响量表和帕金森病结局量表-心理社会方面)达到了“推荐”的水平。39 项帕金森病问卷是经过最彻底测试和应用的问卷。另外三种通用措施(15D 生活质量问卷、个体生活质量评估直接加权时间表和世界卫生组织生活质量评估简短版)和特定的帕金森病生活质量量表为“建议”。只需再稍加努力完成规定的要求,它们就可以达到“推荐”的水平。目前,有多种健康相关生活质量措施可用于帕金森病环境,工作组不建议开发新的量表。选择最适合特定目标的仪器需要考虑每个量表的特点和评估的目标。

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