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.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.