Gilles de la Tourette and Obsessive Compulsive Disorder in Childhood: A Community Based Study

Grant Type
Grant Year
Institution Location
Institution Organization Name
University College of London UK
Investigators Name
Zeitlin, Professor Harry

Tourette Syndrome (TS) was originally thought to be rare, but successive studies have reported higher rates of occurrence than was once thought. TS is now usually reported to occur in about 5/10,000 of the general population. However, those figures are derived mainly from clinic populations, and few studies have been able to look at the prevalence in the community, and particularly the frequency among children and adolescents. It is important to know just how common the condition really is for several reasons. TS usually manifests first in childhood, and without knowing the true incidence, it is difficult to understand the natural history and predict long-term outcome. It is equally important to know whether those referred for professional help differ from those who are not, and if so, how they are different. Searching a whole population for an apparently uncommon condition while at the same time screening for all emotional and behavioral problems (10-20% of the population) is not an easy task. The UK study in Essex (population 300,000) provides the opportunity to do just that for TS. Such a study has to be carried out with care and sensitivity both to ensure scientific validity, and to preserve the rights and confidentiality of the children and families who have agreed to cooperate with the study. Last year’s TSA grant award has ensured that our investigation is now fully set up and running well. Because it is essential to achieve a high response rate in whole population studies, we are working through age range by age range, and school by school. Results from 13 to 14-year-olds at the first school have been analyzed, and these data also act as a pilot for the study as a whole. Also, we are aware of all referred children in the geographic area, as we run all of the clinics. Our data collection information comes from parents, teachers and the young people themselves. Thus far, we have data from at least one source on 99% of the children studied. Even in this initial sample we have found considerably more than the expected number that show clear TS symptoms. These are in addition to those who already had been referred to clinics. The findings are very interesting, and so far appear to support our original hypothesis that there is a significant number of children who have TS in the general community who are not referred and therefore not known to clinics. If these results are validated by the main study, the whole population prevalence rate will be higher than any previously reported. From the general epidemiology data, we do have some indication of the differences between those who have been referred for help and those who have not. Although severity of the symptoms of TS itself is an important factor, the presence of associated behavioral problems such as obsessional behavior and attention deficit disorder seem to be at least as important in determining whether a referral is made. While our findings from the pilot sample are preliminary, if confirmed in the larger sample, this study should help to provide appropriate therapy and resources for children and teenagers with TS. Professor Harry Zeitlin, Dr. Mary Robertson, University College of London London, UK AWARD: $25,000 Tourette Association of America Inc. – Research Grant Award 1996