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Children with Tourette Syndrome in the United States

Parent-Reported Diagnosis, Co-Occurring Disorders, Severity, and Influence of Activities on Tics

Wolicki, Sara Beth MPH, CPH*,†; Bitsko, Rebecca H. PhD; Danielson, Melissa L. MSPH; Holbrook, Joseph R. PhD, MPH; Zablotsky, Benjamin PhD; Walkup, John T. MD§; Woods, Douglas W. PhD; Mink, Jonathan W. MD, PhD

Journal of Developmental & Behavioral Pediatrics: July/August 2019 - Volume 40 - Issue 6 - p 407–414
doi: 10.1097/DBP.0000000000000667
Original Article
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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.

*Oak Ridge Institute for Science and Education, Centers for Disease Control and Prevention Research Participation Programs, Oak Ridge, TN;

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

National Center for Health Statistics, Centers for Disease Control and Prevention, Hyattsville, MD;

§Department of Psychiatry, Northwestern University Feinberg School of Medicine, Chicago, IL;

Department of Psychology, Graduate School, Marquette University, Milwaukee, WI;

Department of Neurology, University of Rochester Medical Center, Rochester, NY.

Address for reprints: Sara Beth Wolicki, MPH, National Center on Birth Defects and Developmental Disabilities, CDC, 4770 Buford Highway, Chamblee, GA 30341, Mailstop E88; e-mail: klx6@cdc.gov.

This research was supported in part by an appointment to the Research Participation Program at the Centers for Disease Control and Prevention (CDC) administered by the Oak Ridge Institute for Science and Education through an interagency agreement between the U.S. Department of Energy and CDC.

Disclosure: J. T. Walkup gets royalties from Guildford, Oxford Press for books on Tourette. He also serves as an advisor and received grant support, travel support and honoraria from the Tourette Association of America. He has received royalties from Wolters Kluwer for CME materials and has received honoraria/travel support for presentations at meeting sponsored by the American Academy of Child and Adolescent Psychiatry and American Psychiatric Association and the American Academy of Pediatrics. D. W. Woods receives royalties from Oxford University Press, Guilford Press, and Springer Press and receives speaking fees from the Tourette Association of America. J. W. Mink is a consultant for Biomarin, Inc; Censa, Inc; Abide Therapeutics, Inc.; and TEVA Inc.; has research contracts with Abeona, Inc.; receives honoraria from the American Academy of Neurology (Associate Editor of Neurology); receives royalties from Elsevier, Inc.; and receives grant funding from National Institutes of Health, Batten Disease Support and Research Association, Batten Research Alliance, Association of University Centers on Disabilities. The remaining authors declare no conflict of interest.

The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the CDC.

See related commentary on page 468

Received October 31, 2018

Accepted February 04, 2019

Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.