How do Chronic Tic Disorders impact adults?

Community Summary of: The Impact of Tourette Syndrome in Adults: Results from the Tourette Syndrome Impact Survey

Authors of the article in the Journal of Community Mental Health: Christine A. Conelea, Douglas W. Woods, Samuel H. Zinner, Cathy L. Budman, Tanya K. Murphy, Lawrence D. Scahill, Scott N. Compton, and John T. Walkup

Published online: November 4, 2011

Community summary posted on March 31, 2026

Word count: 748

Reading grade level: 10

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Why does this matter?
Chronic Tic Disorders (CTD), including Tourette Syndrome (TS), often begin in childhood. Some people's tics lessen  as they grow up, but many people live with tics throughout their lives. Some research suggests that about one-third of individuals with TS still have impairing tics as adults.

Although existing research suggests that tics can be challenging in adulthood, findings come from small groups of people seeking treatment. Clinic samples may exclude adults with mild tics. They might exclude people who can’t afford or get to treatment. They also might exclude adults whose childhood treatment didn’t work well. Research on TS in large groups often combines adult and child data. This makes it difficult to know about the impact on adults alone. 

This study explores how TS impacts adults. A better understanding of the impact of TS on adults would help improve treatment and guide new treatments.

What happened?
The authors wanted to collect preliminary data and generate hypotheses. This study looked at the characteristics and impact of CTD in a large Internet sample. The authors hoped to use this data to guide future research using more traditional methods.

Participants were recruited through a link posted on the website of the Tourette Syndrome Association (TSA). Recruitment emails were sent by the TSA to its patient members. A study announcement was placed in a TSA newsletter. A total of 1,216 adults (age 18 years and older) consented to participate and 970 answered at least one question on the survey. 

Participants were included in data analyses if they 1) reported being formally diagnosed with any CTD, and 2) reported tics before the age of 18. Of those who answered at least one question, 286 did not report a formal TS or other CTD diagnosis.

What did the authors learn?
The results showed that tics cause mild to moderate impairment in several areas of adult life. Results suggest that in adults:

  1. Higher tic severity is associated with greater functional impairments.
  2. Many adults report avoiding public or social settings because of their tics. 
  3. Many adults are treated differently by others or experience discrimination due to their tics.
  4. Psychological problems, disability, and quality of life dissatisfaction are greater in adults with TS as compared to the general population.
  5. Tic interference, particularly interference associated with motor tics, best predicts disability, quality of life, and psychological difficulties. 

This data is consistent with previous research that suggests that tics impact people’s lives in negative ways. It also highlights that tics impact people across the lifespan.

Specifically, participants showed more psychological difficulties and a lower quality of life compared to the general population:

  • Emotional Impact: A large majority (68.0%) reported feeling different or abnormal because of their tics.
  • Mental Health: Nearly 60% believed that their tics contributed to the development of another emotional disorder. They reported higher levels of depression, anxiety, and stress than the general population.
  • Avoidance: Many reported avoiding social events or public places (over 38% for both) because of their tics.
  • Discrimination: A large majority (68.0%) reported having been treated differently by others.
    • 30.8% reported being treated rudely or discriminated against by a business.
    • 20.4% had been asked to leave a school setting, and 17.3% were asked to leave a public place.
  • Work: Tics mildly interfered with work productivity and co-worker relationships.
    • 12.6% of participants reported not pursuing job advancement due to tics.
    • 11.9% avoided job interviews.
    • 7% reported quitting a job because of tics.
  • School: For those attending school, tics mildly interfered with academic life.
    • 13.1% reported not pursuing additional education because of their tics.
  • Pain/Damage: 60.0% reported having at least one tic that caused pain or physical damage.
  • Medical Attention: 12.8% had been hospitalized or sought urgent medical attention due to their tics.

What can researchers do next?
Further research may shed light on how to improve quality of life and how to buffer against the adverse effects of discrimination. In addition, future research should also include measures to better assess the public health or financial impact of this disorder on the general population. Examples include cost-care analysis or dollars lost as a result of decreased work productivity due to tics. 

The authors hope that the current research will compel researchers, patient support organizations, public agencies, and health care providers to help improve the lives of adults with TS. This can happen by gaining a more comprehensive understanding of TS and improved treatment.

How can you find out more?
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