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A National Profile of Tourette Syndrome, 2011–2012

Bitsko, Rebecca H. PhD*; Holbrook, Joseph R. PhD*; Visser, Susanna N. DrPH*; Mink, Jonathan W. MD, PhD; Zinner, Samuel H. MD; Ghandour, Reem M. DrPH§; Blumberg, Stephen J. PhD

Journal of Developmental & Behavioral Pediatrics: June 2014 - Volume 35 - Issue 5 - p 317–322
doi: 10.1097/DBP.0000000000000065
Original Article

Objective: To provide recent estimates of the prevalence of Tourette syndrome among a nationally representative sample of US children and to describe the association of Tourette syndrome with indicators of health and functioning.

Methods: Data on 65,540 US children aged 6 to 17 years from the 2011–2012 National Survey of Children's Health were analyzed. Parents reported whether a health care provider had ever told them their child had Tourette syndrome or other neurobehavioral or chronic health conditions and whether their child had current Tourette syndrome.

Results: Based on parents' report, 0.19% of US children had Tourette syndrome; the average age of diagnosis was 8.1 years. Children with Tourette syndrome, compared with those without, were more likely to have co-occurring neurobehavioral and other health conditions, meet criteria for designation as having a special health care need, receive mental health treatment, have unmet mental health care needs, and have parents with high parenting aggravation and parents who were contacted about school problems; they were less likely to receive effective care coordination or have a medical home. After controlling for co-occurring neurobehavioral conditions, the findings on parents being contacted about school problems and children having unmet mental health care needs were no longer significant.

Conclusions: Tourette syndrome is characterized by co-occurring neurobehavioral and other health conditions, and poorer health, education, and family relationships. The findings support previous recommendations to consider co-occurring conditions in the diagnosis and treatment of Tourette syndrome. Future research may explore whether having a medical home improves outcomes among children with Tourette syndrome.

*Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities (NCBDDD), Centers for Disease Control and Prevention, Atlanta, GA;

Departments of Neurology, Neurobiology and Anatomy, Brain and Cognitive Sciences and Pediatrics, University of Rochester, Rochester, NY;

Department of Pediatrics, Division of Developmental Medicine, University of Washington, Seattle, WA;

§Office of Epidemiology and Research, Maternal and Child Health Bureau, Health Resources and Services Administration, Rockville, MD;

Division of Health Interview Statistics, National Center for Health Statistics, Centers for Disease Control and Prevention, Hyattsville, MD.

Address for reprints: Rebecca H. Bitsko, PhD, NCBDDD/CDC, 1600 Clifton Rd, MS E-88, Atlanta, GA 30333; e-mail:

Disclosure: The authors declare no conflict of interest.

Received January , 2014

Accepted March , 2014

© 2014 by Lippincott Williams & Wilkins