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Key Findings: Health Care Needs of Children with Tourette Syndrome

Doctor talking with a mother and daughter

Researchers from the Centers for Disease Control and Prevention (CDC) and Emory University recently used data from the 2007-2008 National Survey of Children’s Health (NSCH) to assess the health care needs and access to care among children and adolescents with Tourette Syndrome (TS). The goal of this analysis was to document the health care needs of children with TS and to compare their needs to those of children without TS and children with asthma (another chronic condition). The results were published in the Journal of Child Neurology. You can read the abstract here. The findings from this article are summarized in the following text.

Main Study Findings

The findings show that children with TS experience greater health care needs and face challenges receiving coordinated care. The presence of another mental, emotional, and behavioral condition along with TS increases these challenges, and these results highlight the importance of addressing these co-occurring conditions to improve the health and well-being of children with TS.

  • Parents of children with TS were more likely to report that their child’s health was fair or poor, that they had greater health care needs, and that they had challenges coordinating their child’s care.
  • Children with TS were more likely to have a co-occurring condition such as attention-deficit/ hyperactivity disorder, a behavior or conduct problem, anxiety, depression, or an autism spectrum disorder.
  • Children with TS and a co-occurring condition had the most health care needs; they were more likely to need services and it was more difficult to coordinate their care.

This paper is based on surveys of parents of children between 6 and 17 years of age who answered questions about their child’s general health, the presence of specific health conditions, and their experiences with the health care system.

More about Tourette Syndrome

Tourette Syndrome is a neurobehavioral condition characterized by motor and vocal tics.

It is not known exactly how many people have TS. The NSCH data suggest that 3 of every 1,000 children aged 6 through 17 years have been diagnosed with TS. Other studies have estimated the rate of TS at 6 per 1,000 children. 1-4 Among children with TS, 79% also have been diagnosed with at least one additional mental, behavioral, or developmental condition, such as attention-deficit/hyperactivity disorder (ADHD), behavioral or conduct problems, anxiety problems, depression, and developmental delay affecting his or her ability to learn. More than one-third of people with TS also have obsessive-compulsive disorder.1,2,5,6

TS can negatively affect health, education, employment, and family and social relationships. Co-occurring conditions can increase the risk for these negative consequences. Early identification and appropriate management of TS and co-occurring conditions may reduce this risk.

CDC’s Work on Tourette Syndrome

Research

The CDC works with partners to conduct research to better understand TS, including the prevalence of TS, the quality of life among people affected by TS, risk and protective factors associated with TS, and health risk behaviors associated with TS. Results from this research inform public health efforts to improve the lives and health outcomes of people affected by TS, implement education programs to help improve the quality of life of those with TS and their families, and guide future research.

Education and Outreach

CDC has partnered with the national Tourette Syndrome Association (TSA) to provide much needed educational programs. The goal of this outreach is to increase awareness and provide information that will help people with TS receive needed health services, be more accepted by those around them, and have the opportunity to succeed in school and work.

The programs educate physicians, allied professionals, and school personnel, as well as those who have TS, their families, and the general public. The programs provide accurate, up-to-date, science-based information about the recognition, diagnosis, and treatment of TS.

More Information

CDC’s website on Tourette Syndrome
Tourette Syndrome Association National Educational and Outreach program

Reference for this Paper

Bitsko RH, Danielson ML, King M, Visser SN, Scahill M, Perou R. Health care needs of children with Tourette Syndrome. Journal of Child Neurology. 2013;  28(12): 1626-1636.

References
  1. Centers for Disease Control and Prevention. Prevalence of diagnosed Tourette syndrome in persons aged 6-17 years -United States, 2007. MMWR Morbidity and Mortality Weekly Report. 2009;58(21):581-5.
  2. Scahill L, Sukhodolsky DG, Williams SK, Leckman JF. Public health significance of tic disorders in children and adolescents. Advances in Neurology. 2005;96:240-8.
  3. Stefanoff P, Wolanczyk T, Gawrys AS, K, Stefanoff E, Kaminska A, Lojewska-Bajbus M, et al. Prevalence of tic disorders among schoolchildren in Warsaw, Poland. European Child & Adolescent Psychiatry. 2008;17(3):171-8.
  4. Khalifa N, von Knorring A-L. Prevalence of tic disorders and Tourette syndrome in a Swedish school population. Developmental Medicine & Child Neurology. 2003;45(5):315-9.
  5. Janik P, Kalbarczyk A, Sitek M. Clinical analysis of Gilles de la Tourette Syndrome based on 126 cases. Neurologia I Neurochirurgia Polska. 2007;41(5):381–7.
  6. Freeman RD, Fast DK, Burd L, Kerbeshian J, Robertson MM, Sandor P. An international perspective on Tourette Syndrome: Selected findings from 3500 individuals in 22 countries. Developmental Medicine & Child Neurology. 2000;42(7):436–47.
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