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The Gilles de la Tourette Syndrome–Quality of Life Scale (GTS-QOL)

Development and validation

From the Institute of Neurology (A.E.C., A.S., M.O., M.M.R., E.J., H.D.C., C.S.), London; Royal Free and University College Medical School (A.S.), London; Department of Psychology (D.M.), Thames Valley University, London, UK; Department of Neurology (M.O.), Universitätsklinikum Eppendorf, Hamburg, Germany; St Georges Hospital Medical School (M.M.R.), London; and Department of Psychiatry (H.D.C.), Brighton and Sussex Medical School, Brighton, UK.

Address correspondence and reprint requests to Dr. Andrea Cavanna, Sobell Department of Motor Neuroscience and Movement Disorders, Institute of Neurology, Queen Square, London WC1N3BG, UK A.Cavanna{at}ion.ucl.ac.uk

Background: Gilles de la Tourette syndrome (GTS) is a chronic neuropsychiatric disorder which has a significant detrimental impact on the health-related quality of life (HR-QOL) of patients. However, no patient-reported HR-QOL measures have been developed for this population.

Objective: The development and validation of a new scale for the quantitative assessment of HR-QOL in patients with GTS.

Methods: In stage 1 (item generation), a pool of 40 potential scale items was generated based on interviews with 133 GTS outpatients, literature review, and consultation with experts. In stage 2 (scale development), these items were administered to a sample of 192 GTS outpatients. Standard statistical methods were used to develop a rating scale satisfying criteria for acceptability, reliability, and validity. In stage 3 (scale evaluation), the psychometric properties of the resulting scale were tested in a second sample of 136 subjects recruited through the UK-Tourette Syndrome Association.

Results: Response data analysis and item reduction methods led to a final 27-item GTS-specific HR-QOL scale (GTS-QOL) with four subscales (psychological, physical, obsessional, and cognitive). The GTS-QOL demonstrated satisfactory scaling assumptions and acceptability; both internal consistency reliability and test-retest reliability were high (Cronbach alpha 0.8 and intraclass correlation coefficient 0.8); validity was supported by interscale correlations (range 0.5–0.7), confirmatory factor analysis, and correlation patterns with other rating scales and clinical variables.

Conclusions: The Gilles de la Tourette syndrome (GTS)–specific health-related quality of life (HR-QOL) scale (GTS-QOL) is proposed as a new disease-specific patient-reported scale for the measurement of HR-QOL in patients with GTS, taking into account the complexity of the clinical picture of GTS.

Abbreviations: ADHD = attention-deficit hyperactivity disorder; ADL = activities of daily living; DSM = Diagnostic and Statistical Manual of Mental Disorders; EQ-5D = EuroQol-5D scale; GTS = Gilles de la Tourette syndrome; GTS-QOL = Gilles de la Tourette Syndrome–Quality of Life Scale; HR-QOL = health-related quality of life; MOVES = Motor tic, Obsessions and compulsions, Vocal tic Evaluation Survey; NHIS = National Hospital Interview Schedule; NHNN = National Hospital for Neurology and Neurosurgery; OCD = obsessive-compulsive disorder; QOLAS = Quality of Life Assessment Schedule; SF-36 = 36-item Short Form Health Survey; VAS = Visual Analogue Scale; YGTSS = Yale Global Tic Severity Scale.

Supplemental data at www.neurology.org

Disclosure: The authors report no disclosures.

Received May 5, 2008. Accepted in final form July 22, 2008.

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