2018 Impact Survey Findings

The Tourette Association of America (TAA) conducted a web-based survey (January-May 2018) to assess the impact of Tourette Syndrome and Tic Disorders on individuals and families.

The survey was disseminated electronically to the Tourette Syndrome and Tic Disorder community via the TAA website, email, and social media. The survey was also distributed via email through the TAA’s Centers of Excellence to affected individuals and families. Participants were informed that all data would be collected anonymously and would be used in aggregate by the Tourette Association of America (TAA) to communicate to the public and to policy-makers about the impact that Tourette Syndrome and Tic Disorders have on individuals and families. Participants had to be over 18 to take this survey. For those under 18, a parent or caregiver was required to fill out the survey on the child’s behalf.

Responder Profile

  • Adult with TS: 29.77% (281)
  • Adults replying on behalf of a child with TS: 66.00% (623)
  • Do not have TS/Tic Disorder*: 4.24% (40)
  • Total: 944

* Responders who noted that they “do not have TS/Tic Disorder” were routed to the end of the survey bypassing the survey.

2018 TAA Impact Survey Working Group:

 

  • Shannon Bennett, PhD, Weill Cornell Medical College
  • Cathy Budman, MD, Long Island Center for Tourette & Related Disorders
  • Barbara Coffey, MD MS, University of Miami
  • Keith Coffman, MD, Children’s Mercy Hospital
  • Mike Himle, PhD, University of Utah
  • Jorge Juncos, MD, Emory University
  • Adam Lewin, PhD, University of South Florida
  • Irene Malaty, MD, University of Florida
  • Jan Rowe, OT, OTR/L, FAOTA, Children’s of Alabama
  • Diana Shineman, PhD, Tourette Association of America
  • Doug Woods, PhD, Marquette University