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Behavioural Neurology
Volume 27 (2013), Issue 1, Pages 95-103
http://dx.doi.org/10.3233/BEN-120274

The Gilles De La Tourette Syndrome-Quality of Life Scale for Children and Adolescents (C&A-GTS-QOL): Development and Validation of the Italian Version

Andrea E. Cavanna,1,2 Chiara Luoni,3 Claudia Selvini,3 Rosanna Blangiardo,3 Clare M. Eddy,1 Paola R. Silvestri,4 Paola V. Calì,5 Stefano Seri,6 Umberto Balottin,7 Francesco Cardona,4 Renata Rizzo,5 and Cristiano Termine3

1Michael Trimble Neuropsychiatry Research Group, BSMHFT and University of Birmingham, Birmingham, UK
2Sobell Department of Motor Neuroscience and Movement Disorders, Institute of Neurology and University College London, London, UK
3Child Neuropsychiatry Unit, Department of Experimental Medicine, University of Insubria, Varese, Italy
4Department of Child Neurology and Psychiatry, 'La Sapienza' University, Rome, Italy
5Section of Child Neuropsychiatry, Department of Pediatrics, University of Catania, Catania, Italy
6School of Life and Health Sciences, Aston Brain Centre, Aston University, Birmingham, UK
7Department of Child Neurology and Psychiatry, IRCCS ’C. Mondino’ Foundation, University of Pavia, Pavia, Italy

Received 6 August 2012; Accepted 6 August 2012

Copyright © 2013 Hindawi Publishing Corporation and the authors. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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.