Limited knowledge of Tourette syndrome causes delay in diagnosis

Tourette syndrome (TS) is characterized by the presence of tics and is often accompanied by other symptoms, like attention deficit hyperactive disorder (ADHD), obsessive-compulsive disorder. The presenting symptoms are supposed to be tics. Onset is usually around school age. Early diagnosis of TS is important in order to provide patients with the necessary support as early as possible.

We examined the diagnostic process via a systematic interview in 314 children with TS.

Median age at onset of symptoms was 3.0 years. In 40.1%, tics were the presenting clinically meaningful symptoms; in the other cases it was an associated symptom, like ADHD symptoms, obsessive-compulsive behavior, or behavioral problems. Median age of tic onset was 5.5 years. If TS presented with an accompanying symptom, the median age of onset was earlier (0-3.5 years). The mean age at the time of diagnosis was 8.9 years. The median delay from onset of the presenting symptoms until diagnosis was 5.3 years and the delay from onset of tics until diagnosis 2.8 years.

There is a lack of knowledge about the normal course of TS among professionals and the public. Consequently, diagnosis is delayed and so accordingly is the initiation of the necessary support.