The quality of life of young people with Tourette syndrome

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.