Children with Tourette Syndrome in the United States: Parent-Reported Diagnosis, Co-Occurring Disorders, Severity, and Influence of Activities on Tics.
Sara Beth Wolicki, Rebecca H Bitsko, Melissa L Danielson and 5 others
PMID 31318778WHAT IT FOUND
Parents of 115 children with Tourette syndrome reported that 82.3% noticed tics by age 8, 50.4%, or half, saw three or more providers before diagnosis, and 84.6%, or most children, had at least one other mental, behavioral, or developmental disorder.
Key findings
01Among 115 children in the Tourette syndrome module, 82.3% of parents reported noticing tics by age 8 years, with a mean age of 6.3 years.
0250.4% of parents reported seeing 3 or more healthcare providers before their child received a Tourette syndrome diagnosis, and the mean time from first noticing tics to diagnosis was 1.7 years.
0384.6% of children ever diagnosed with Tourette syndrome also had at least one other mental, behavioral, or developmental disorder, with a mean of 3.2 co-occurring disorders.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
The sample was a convenience sample of 115 children, and the authors state the results are not generalizable to all U.S. children with Tourette syndrome. All data came from parent report and were not validated against medical records or clinical assessment. Different questions used different subsets: 115 for the module, 82 for current Tourette syndrome activity questions, and 78 for co-occurring disorder analysis. Many responses were missing, and some disorder categories were collapsed or not shown to reduce disclosure risk. Recall bias is possible because parents reported past diagnostic experiences. Most children had been diagnosed before the 2011-2012 survey, so the findings may not reflect recent diagnostic practices. The study was descriptive and cannot show that any activity, provider type, or disorder caused another outcome.
Declared interests
The survey was conducted by the National Center for Health Statistics with support from the CDC. Authors reported royalties from publishers, advisory or speaking fees from the Tourette Association of America, honoraria or travel support from professional organizations, consulting for multiple companies, research contracts, and grants from NIH or disease foundations. Remaining authors declared no conflict.
The easy way to misread this
Do not read the activity reports as evidence that any activity will reduce or worsen tics. The survey asked parents to describe perceived effects, did not test interventions, and used a small convenience sample, so it cannot show cause.