Objective 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). Although the diagnosis of GTS is usually established in childhood, little is known about factors that predict the long-term well-being of these patients, especially in the presence of co-morbid behavioural problems. We set out to prospectively investigate the childhood predictors of HR-QOL in adult patients with GTS.

Method 46 patients with GTS aged 6–16 years underwent a standardised clinical assessment of both tics and behavioural symptoms at a specialist GTS clinic. The same patients were re-assessed as adults (>16 years of age), 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 Multiple linear regression analysis identified tic severity, premonitory urges and family history of GTS as childhood predictors of poorer HR-QOL in adults with GTS. Specifically, tic severity significantly predicted poor outcome across physical, psychological and cognitive domains of the GTS-QOL, reflecting its widespread effect 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.