Issue title: Researching Tourette syndrome in Europe
Article type: Research Article
Authors: Cavanna, Andrea E.; | Luoni, Chiara | Selvini, Claudia | Blangiardo, Rosanna | Eddy, Clare M. | Silvestri, Paola R. | Calì, Paola V. | Seri, Stefano | Balottin, Umberto | Cardona, Francesco | Rizzo, Renata | Termine, Cristiano
Affiliations: Michael Trimble Neuropsychiatry Research Group, BSMHFT
and University of Birmingham, Birmingham, UK | Sobell Department of Motor Neuroscience and Movement
Disorders, Institute of Neurology and University College London, London, UK | Child Neuropsychiatry Unit, Department of Experimental
Medicine, University of Insubria, Varese, Italy | Department of Child Neurology and Psychiatry, 'La
Sapienza' University, Rome, Italy | Section of Child Neuropsychiatry, Department of
Pediatrics, University of Catania, Catania, Italy | School of Life and Health Sciences, Aston Brain
Centre, Aston University, Birmingham, UK | Department of Child Neurology and Psychiatry, IRCCS
'C. Mondino' Foundation, University of Pavia, Pavia, Italy
Note: [] Corresponding author: Andrea Eugenio Cavanna, MD PhD, Department
of Neuropsychiatry, The Barberry National Centre for Mental Health, 25 Vincent
Drive, Birmingham B15 2FG, UK. E-mail: A.Cavanna@ion.ucl.ac.uk
Abstract: BACKGROUND: Gilles de la Tourette syndrome (GTS) is a chronic
childhood-onset neuropsychiatric disorder with a significant impact on
patients' health-related quality of life (HR-QOL). Cavanna et al. (Neurology
2008; 71: 1410–1416) developed and validated the first disease-specific
HR-QOL assessment tool for adults with GTS (Gilles de la Tourette
Syndrome-Quality of Life Scale, GTS-QOL). This paper presents the translation,
adaptation and validation of the GTS-QOL for young Italian patients with GTS. METHODS: A three-stage process involving 75 patients with GTS
recruited through three Departments of Child and Adolescent Neuropsychiatry in
Italy led to the development of a 27-item instrument (Gilles de la Tourette
Syndrome-Quality of Life Scale in children and adolescents, C&A-GTS-QOL)
for the assessment of HR-QOL through a clinician-rated interview for 6–12
year-olds and a self-report questionnaire for 13–18 year-olds. RESULTS: The C&A-GTS-QOL demonstrated satisfactory scaling
assumptions and acceptability. Internal consistency reliability was high
(Cronbach's alpha > 0.7) and validity was supported by interscale
correlations (range 0.4–0.7), principal-component factor analysis and
correlations with other rating scales and clinical variables. CONCLUSIONS: The present version of the C&A-GTS-QOL is the first
disease-specific HR-QOL tool for Italian young patients with GTS, satisfying
criteria for acceptability, reliability and validity.
Keywords: Gilles de la Tourette syndrome, tics, quality of life, wellbeing, behaviour
DOI: 10.3233/BEN-120274
Journal: Behavioural Neurology, vol. 27, no. 1, pp. 95-103, 2013
Received 6 August 2012
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Accepted 6 August 2012
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Published: 2013
