Abstract

Background: Though Gilles de la Tourette's syndrome (GTS) has significant impact on the quality of life of its patients, measures of health-related quality of life (HR-QOL) specific to adolescents and adults with GTS were not developed until recently. The present study provides evidence on the validity of the Gilles de la Tourette Syndrome-Quality of Life Scale (GTS-QOL), the first disease-specific HR-QOL instrument for GTS patients, for the first time in an East Asian sample.Methods: One hundred and two Japanese individuals aged 13 and above with GTS were included in our study. Internal consistency was evaluated using Cronbach's alpha. The 4-factor structure of the GTS-QOL was assessed using confirmatory factor analysis, using goodness of fit indices, factor loadings of each questionnaire item, and covariances between factors. Validity was assessed using interscale correlations. Convergent and discriminate construct validity was evaluated using correlations with other scales such as the 28-item General Health Questionnaire, the Yale Global Tic Severity Scale, and the short version of the Padua Inventory.Results: Scaling assumptions were met. Internal consistency reliability was high, with a Cronbach's alpha of 0.96. Confirmatory factor analysis revealed sufficient factor loadings and goodness of fit. All measures of goodness of fit corroborated the fit of the 4-factor model. Standardized covariances between factors in the confirmatory factor analysis were >0.8. There were significant correlations with other well-validated scales, and thus convergent and discriminate construct validity was sufficient.Conclusion: The GTS-QOL is a valid and reliable instrument to measure disease-specific HR-QOL of GTS patients in Japan.

Highlights

  • The present study provides evidence on the validity of the Gilles de la Tourette Syndrome-Quality of Life Scale (GTS-quality of life (QOL)), the first disease-specific health-related quality of life (HR-QOL) instrument for Gilles de la Tourette’s Syndrome (GTS) patients, for the first time in an East Asian sample

  • Gilles de la Tourette’s Syndrome (GTS) is a neurological disorder characterized by multiple motor and vocal tics that often appears in childhood and affects up to 1% of school age children [1]

  • Ever since the first study on the health-related quality of life (HR-QOL) of GTS patients [3], multiple studies have shown that patients with GTS have lower QOL than the general population [4]

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Summary

Introduction

Gilles de la Tourette’s Syndrome (GTS) is a neurological disorder characterized by multiple motor and vocal tics that often appears in childhood and affects up to 1% of school age children [1]. Ever since the first study on the health-related quality of life (HR-QOL) of GTS patients [3], multiple studies have shown that patients with GTS have lower QOL than the general population [4]. Despite the growing evidence of lower HR-QOL in patients with the disorder, a HR-QOL measure specific for GTS that addresses the various facets of the disorder that have significant impact on the patient’s QOL was not introduced until recently [9]. Though Gilles de la Tourette’s syndrome (GTS) has significant impact on the quality of life of its patients, measures of health-related quality of life (HR-QOL) specific to adolescents and adults with GTS were not developed until recently. The present study provides evidence on the validity of the Gilles de la Tourette Syndrome-Quality of Life Scale (GTS-QOL), the first disease-specific HR-QOL instrument for GTS patients, for the first time in an East Asian sample

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Results
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