Su Merina T, McFarlane Fiona, Cavanna Andrea E, Termine Cristiano, Murray Imogen, Heidemeyer Larissa, Heyman Isobel, Murphy Tara
1 Developmental Neurosciences Programme, UCL Institute of Child Health, London, United Kingdom.
2 Psychological Medicine Team, Department of Child and Adolescent Mental Health, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom.
J Child Neurol. 2017 Jan;32(1):76-83. doi: 10.1177/0883073816670083. Epub 2016 Sep 30.
Gilles de la Tourette syndrome is a chronic neuropsychiatric disorder that can have a detrimental impact on the health-related quality of life of children with the condition. To date no patient-reported health-related quality of life measures have been developed for children and adolescents in the English language. This study validated the first disease-specific scale for the quantitative assessment of health-related quality of life in 118 children and adolescents with Gilles de la Tourette syndrome (C&A-GTS-QOL) following language adaptation from Italian to English in the United Kingdom. Standard statistical methods were used to test the psychometric properties of the rating scale. Principal component factor analyses led to the identification of six health-related quality of life domains (cognitive, copro-phenomena, psychological, physical, obsessive-compulsive, and activities of daily living), explaining 66.7% of the overall variance. The C&A-GTS-QOL demonstrated satisfactory scaling assumptions and acceptability; validity was supported by interscale correlations (range 0.2-0.7), confirmatory factor analysis, and correlation patterns with other rating scales and clinical variables.
抽动秽语综合征是一种慢性神经精神障碍,会对患有该疾病的儿童的健康相关生活质量产生不利影响。迄今为止,尚未开发出针对儿童和青少年的英文患者报告的健康相关生活质量测量方法。本研究在英国将意大利语版本的量表进行语言改编为英语后,对118名抽动秽语综合征儿童和青少年(C&A-GTS-QOL)用于定量评估健康相关生活质量的首个疾病特异性量表进行了验证。使用标准统计方法来测试该评定量表的心理测量特性。主成分因子分析确定了六个健康相关生活质量领域(认知、伴随现象、心理、身体、强迫观念及行为、日常生活活动),解释了总方差的66.7%。C&A-GTS-QOL表现出令人满意的量表假设和可接受性;量表间相关性(范围为0.2 - 0.7)、验证性因子分析以及与其他评定量表和临床变量的相关模式均支持了该量表的有效性。