Cavanna A E, Schrag A, Morley D, Orth M, Robertson M M, Joyce E, Critchley H D, Selai C
Sobell Department of Motor Neuroscience and Movement Disorders, Institute of Neurology, Queen Square, London WC1N3BG, UK
Neurology. 2008 Oct 28;71(18):1410-6. doi: 10.1212/01.wnl.0000327890.02893.61.
Gilles de la Tourette syndrome (GTS) is a chronic neuropsychiatric disorder which has a significant detrimental impact on the health-related quality of life (HR-QOL) of patients. However, no patient-reported HR-QOL measures have been developed for this population.
The development and validation of a new scale for the quantitative assessment of HR-QOL in patients with GTS.
In stage 1 (item generation), a pool of 40 potential scale items was generated based on interviews with 133 GTS outpatients, literature review, and consultation with experts. In stage 2 (scale development), these items were administered to a sample of 192 GTS outpatients. Standard statistical methods were used to develop a rating scale satisfying criteria for acceptability, reliability, and validity. In stage 3 (scale evaluation), the psychometric properties of the resulting scale were tested in a second sample of 136 subjects recruited through the UK-Tourette Syndrome Association.
Response data analysis and item reduction methods led to a final 27-item GTS-specific HR-QOL scale (GTS-QOL) with four subscales (psychological, physical, obsessional, and cognitive). The GTS-QOL demonstrated satisfactory scaling assumptions and acceptability; both internal consistency reliability and test-retest reliability were high (Cronbach alpha > or =0.8 and intraclass correlation coefficient > or =0.8); validity was supported by interscale correlations (range 0.5-0.7), confirmatory factor analysis, and correlation patterns with other rating scales and clinical variables.
The Gilles de la Tourette syndrome (GTS)-specific health-related quality of life (HR-QOL) scale (GTS-QOL) is proposed as a new disease-specific patient-reported scale for the measurement of HR-QOL in patients with GTS, taking into account the complexity of the clinical picture of GTS.
抽动秽语综合征（GTS）是一种慢性神经精神疾病，对患者的健康相关生活质量（HR-QOL）有重大不利影响。然而，尚未针对该人群开发患者报告的HR-QOL测量方法。
开发并验证一种用于定量评估GTS患者HR-QOL的新量表。
在第1阶段（条目生成），基于对133名GTS门诊患者的访谈、文献综述以及专家咨询，生成了一组40个潜在的量表条目。在第2阶段（量表开发），将这些条目施用于192名GTS门诊患者样本。使用标准统计方法开发一个满足可接受性、信度和效度标准的评定量表。在第3阶段（量表评估），通过英国抽动秽语综合征协会招募的136名受试者的第二个样本中测试所得量表的心理测量特性。
反应数据分析和条目缩减方法产生了一个最终的27个条目的GTS特异性HR-QOL量表（GTS-QOL），具有四个子量表（心理、身体、强迫观念和认知）。GTS-QOL表现出令人满意的量表假设和可接受性；内部一致性信度和重测信度均很高（Cronbachα≥0.8且组内相关系数≥0.8）；量表间相关性（范围0.5 - 0.7）、验证性因素分析以及与其他评定量表和临床变量的相关模式支持了效度。
考虑到GTS临床表现的复杂性，提出抽动秽语综合征（GTS）特异性健康相关生活质量（HR-QOL）量表（GTS-QOL）作为一种新的疾病特异性患者报告量表，用于测量GTS患者的HR-QOL。
