Neuro-QoL health-related quality of life measurement system: Validation in Parkinson's disease

Neuro-QoL health-related quality of life measurement system: Validation in Parkinson's disease
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DOI:
10.1002/mds.26546
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发表时间:
2016-05-01
期刊:
影响因子:
8.6
通讯作者:
Cella, David
Cella, David
中科院分区:
医学1区
文献类型:
--
作者:
Nowinski, Cindy J.;Siderowf, Andrew;Cella, David

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神经生活质量是一个多维度的患者报告的结果测量系统,评估由神经内科患者和护理人员确定的重要的生理、心理和社会健康方面。作为第一个使用现代测试开发方法创建的神经系统特异性患者报告结果测量系统之一,neuroqol能够进行简短而精确的评估,并能够进行pd特异性和跨疾病比较。我们提出神经生活质量的临床验证结果,使用PD患者的样本。方法从学术医疗中心招募的120例PD患者在基线、1周和6个月时进行评估。评估包括神经质量、一般效度和pd特异性效度测量。结果男性占62%,白人占95%,平均年龄66岁;H、Y期分别为1期(16%)、2期(61%)、3期(18%)和4期(5%)。neuroqol的内部一致性和重测信度范围为Cronbach's alpha =0.81 ~ 0.94,类内相关系数为0.66 ~ 0.80。神经生活质量和遗产测量之间的Pearson相关性通常是温和的,并且在预期的方向上。UPDRS第2部分分别与上肢神经质量和活动能力中度相关(r =-0.44; -0.59)。帕金森病问卷-39和类似结构的神经生活质量测量显示出强到中度的相关性(r =0.70-0.44)。神经质量测量的疲劳、活动能力、积极情绪和情绪/行为控制显示对自我报告的变化有反应。结论神经质量评价在帕金森病的临床研究中是有效的。除了两项措施外,所有措施的可靠性都足以进行群体比较,并有一些证据支持对变化的反应性。neuroqol具有一些特点,如简便性、给药灵活性和适用性,可用于各种情况下的跨疾病比较,这可能对用户有利。(c) 2016年运动障碍协会
IntroductionNeuro-QoL is a multidimensional patient-reported outcome measurement system assessing aspects of physical, mental, and social health identified by neurology patients and caregivers as important. One of the first neurology-specific patient-reported outcome measure systems created using modern test development methods, Neuro-Qol enables brief, yet precise, assessment and the ability to conduct both PD-specific and cross-disease comparisons. We present results of Neuro-QoL clinical validation using a sample of PD patients.MethodsA total of 120 PD patients recruited from academic medical centers were assessed at baseline, 1 week, and 6 months. Assessments included Neuro-QoL and general and PD-specific validity measures.ResultsParticipants were 62% male and 95% white (average age=66); H & Y stages were 1 (16%), 2 (61%), 3 (18%), and 4 (5%). Internal consistency and test-retest reliability of Neuro-QoL ranged from Cronbach's alphas=0.81 to 0.94 with intraclass correlation coefficients=0.66 to 0.80. Pearson's correlations between Neuro-QoL and legacy measures were generally moderate and in expected directions. UPDRS Part 2 was moderately correlated with Neuro-QoL Upper Extremity and Mobility, respectively (r's=-0.44; -0.59). Parkinson's Disease Questionnaire-39 and Neuro-QoL measures of similar constructs showed strong-to-moderate correlations (r's=0.70-0.44). Neuro-QoL measures of fatigue, mobility, positive emotion, and emotional/behavioral control showed responsiveness to self-reported change.ConclusionsNeuro-QoL is valid for use in PD clinical research. Reliability for all but two measures is sufficient for group comparisons, with some evidence supporting responsiveness to change. Neuro-QoL possesses characteristics, such as brevity, flexibility in administration, and suitability, for cross-disease comparisons that may be advantageous to users in a variety of settings. (c) 2016 Movement Disorder Society