The prevalence and epidemiology of Gilles de la Tourette syndrome. Part 1: the epidemiological and prevalence studies.

The prevalence and epidemiology of Gilles de la Tourette syndrome (GTS) are more complex than was once thought. Until fairly recently, GTS was thought to be a rare and, according to some, a psychogenically mediated disorder. Prevalence depends, at least in part, on the definition of GTS, the type of ascertainment, and epidemiological methods used. However, in dedicated specialist GTS clinics, the majority of patients were noted to have positive family histories of tics or GTS, and large, extended, multiply-affected GTS pedigrees indicated that many family members had undiagnosed tics or GTS: it was therefore realized that GTS was far from uncommon. Seven early epidemiological studies reported that GTS was uncommon or rare for a variety of reasons. More recently, however, two pilot studies and 12 large definitive studies in mainstream school and school-age youngsters in the community, using similar multistage methods, have documented remarkably consistent findings, demonstrating prevalence figures for GTS of between 0.4% and 3.8% for youngsters between the ages of 5 and 18 years. Of the 420,312 young people studied internationally, 3,989 (0.949%) were diagnosed as having GTS. It is therefore suggested that a figure of 1% would be appropriate for the overall international GTS prevalence figure. There were however, "outliers" to the figure. For instance, GTS does seem to be substantially rarer in African-American people and has been reported only very rarely in sub-Saharan black African people. GTS is found in all other cultures, although to possibly differing degrees. In all cultures where GTS has been reported, the phenomenology is similar, highlighting the biological underpinnings of the disorder.