Determinants of health-related quality of life in Gilles de la Tourette syndrome

Background. Gilles de la Tourette Syndrome (GTS) is a chronic neuropsychiatric disorder characterised by multiple motor and vocal tics, and associated to specific behavioural disturbances, which bear a significant detrimental impact on the health-related quality of life (HR-QOL) of patients. Aims. To provide the first investigation of the main determinants of HR-QOL in GTS using a disease-specific HR-QOL measure. Methods. A 40-item GTS-specific HR-QOL inventory was generated based on interviews with 120 GTS outpatients attending the Tourette clinic, Queen Square, London, plus literature review and consultation with movement disorders experts. The inventory was then administered to a new sample of 102 adult patients, along with standardised psychometric rating scales for tic severity, obsessionality, anxiety, and depression, and a generic HR-QOL scale. Results. The Physical and Psychological domains of HR-QOL were most affected in our clinical sample. Multiple regression analysis showed that both tic severity and comorbid behavioural problems are strong predictors of GTS-QOL scores. The GTS-QOL inventory showed high convergent validity with the generic HR-QOL measure. Conclusions. The GTS-QOL inventory is proposed as a clinically sound basis for the development of a new measure of disease-specific HR-QOL in patients with GTS, taking into account the complexity of the clinical picture of the syndrome.