Predictors during childhood of future health-related quality of life in adults with Gilles de la Tourette syndrome

Background: Gilles de la Tourette syndrome (GTS) is a chronic neurodevelopmental disorder characterised by multiple motor and phonic tics and behavioural problems. Patients with GTS of all ages often report a poor health-related quality of life (HR-QOL). The diagnosis of GTS is usually established in childhood but little is known about factors that predict the long-term well-being of patients, especially in the presence of co-morbid behavioural problems. Aim: To investigate the childhood predictors of HR-QOL in a cohort of adult patients with GTS. Methods: Forty-six patients with GTS aged 6-16 years underwent a baseline standardised clinical assessment of both tics and behavioural symptoms at a specialist GTS clinic. The same patients were re-assessed aged 16 years and above, with a mean follow-up period of 13 years (range 3-25 years), when they completed the Gilles de la Tourette Syndrome-Quality of Life Scale (GTS-QOL), a disease-specific measure of HR-QOL. Results: Tic severity, premonitory urges and family history of GTS were identified as predictors during childhood of a poorer HR-QOL in adults with GTS by multiple linear regression analysis. Specifically, tic severity significantly predicted poor outcome across physical, psychological and cognitive domains of the GTS-QOL, reflecting widespread effects on HR-QOL. Conclusion: Young patients with severe tics associated with characteristic premonitory urges and a family history of tic disorders appear to be at higher risk for poorer HR-QOL as adults. Further prospective research into HR-QOL in GTS is required in order to inform long-term strategic resource allocation.