The quality of life of young people with Tourette syndrome

Child Care Health Dev. 2009 Jul;35(4):496-504. doi: 10.1111/j.1365-2214.2009.00983.x.

Abstract

Background: The study examined a UK sample of 57 young people with Tourette syndrome (TS).

Aims: The purpose of this study was to consider the impact of TS on young people's Quality of Life (QoL).

Methods: The study used a mixed methods design, combining focus groups and questionnaire data. Child report questionnaires measured QoL and TS symptom severity.

Results: The results showed that the QoL of children with TS was significantly worse than that of children in a UK normative sample. Analysis of transcripts from the groups identified four main themes; 'TS can be distressing and disabling', 'struggling to fit into society's expectations of normal behaviour', 'needing to control tics' and 'TS is one part of who I am'.

Conclusions: Poorer QoL was associated with increased symptom severity in terms of tics, Attention Deficit Hyperactivity Disorder diagnosis and obsessive compulsive behaviours.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Attention Deficit Disorder with Hyperactivity / complications
  • Child
  • Female
  • Focus Groups
  • Humans
  • Male
  • Obsessive-Compulsive Disorder / complications
  • Quality of Life / psychology*
  • Severity of Illness Index
  • Surveys and Questionnaires
  • Tics / psychology*
  • Tourette Syndrome / psychology*