The English Version of the Gilles de la Tourette Syndrome-Quality of Life Scale for Children and Adolescents (C&A-GTS-QOL).
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.
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.
Merina T
MT
Su
2 Psychological Medicine Team, Department of Child and Adolescent Mental Health, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom.
Fiona
F
McFarlane
3 Department of Neuropsychiatry, BSMHFT and University of Birmingham, Birmingham, United Kingdom.|4 School of Life and Health Sciences, Aston Brain Centre, Aston University, Birmingham, United Kingdom.|5 Sobell Department of Motor Neuroscience and Movement Disorders, Institute of Neurology and University College London, London, United Kingdom.
Andrea E
AE
Cavanna
6 Child Neuropsychiatry Unit, Department of Experimental Medicine, University of Insubria, Varese, Italy.
Cristiano
C
Termine
2 Psychological Medicine Team, Department of Child and Adolescent Mental Health, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom.
Imogen
I
Murray
2 Psychological Medicine Team, Department of Child and Adolescent Mental Health, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom.
Larissa
L
Heidemeyer
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.
Isobel
I
Heyman
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.
Tara
T
Murphy
D000203:Activities of Daily Living; D000293:Adolescent; D002648:Child; D003071:Cognition; D015897:Comorbidity; D004644:Emotions; D005163:Factor Analysis, Statistical; D005260:Female; D006801:Humans; D008297:Male; D009771:Obsessive-Compulsive Disorder; D025341:Principal Component Analysis; D011594:Psychometrics; D011788:Quality of Life; D015203:Reproducibility of Results; D057566:Self Report; D005879:Tourette Syndrome / Q000175:diagnosis* / Q000523:psychology*; D014175:Translating
Gilles de la Tourette; children and adolescents; health-related quality of life; validation