Children with Tourette Syndrome in the United States: Parent-Reported Diagnosis, Co-Occurring Disorders, Severity, and Influence of Activities on Tics.

OBJECTIVE

Describe the diagnostic process for Tourette syndrome (TS) based on parent report, as well as TS severity and associated impairment; the influence of common daily activities on tics; and the presence of co-occurring mental, behavioral, and developmental disorders among children in the United States.

METHODS

Parent-report data from the 2014 National Survey of the Diagnosis and Treatment of ADHD and Tourette Syndrome on 115 children ever diagnosed with TS were analyzed. Descriptive, unweighted analyses included frequencies and percentages, and means and standard deviations. Fisher's exact test and t-tests were calculated to determine statistically significant differences.

RESULTS

The mean age that tics were first noticed was 6.3 years, and, on average, TS was diagnosed at 7.7 years. The time from initially noticing tics to TS diagnosis averaged 1.7 years. The mean age when TS symptoms were most severe was 9.3 years. Tic severity was associated with impaired child functioning but not tic noticeability. Almost 70% of parents reported that fatigue and major transitions made their child's tics worse. Children with ever-diagnosed TS had a mean of 3.2 ever-diagnosed co-occurring mental, behavioral, or developmental disorders; a quarter (26.9%) had 5 or more co-occurring disorders.

DISCUSSION

In this sample of children with TS, the time to diagnosis averaged less than 2 years from when tics were initially noticed. More severe TS was associated with greater functional impairment, and co-occurring disorders were common among children with TS. This study provides insight into the current experiences of children with TS in the United States and their families.