Abstract

Gilles de la Tourette syndrome (GTS) is a neurodevelopmental condition characterised by tics and co-morbid behavioural problems, affecting predominantly male patients. Tic severity typically fluctuates over time, with a consistent pattern showing improvement after adolescence in a considerable proportion of patients. Both tics and behavioural co-morbidities have been shown to have the potential to affect patients’ health-related quality of life (HR-QoL) in children and adults with persisting symptoms. In this study, we present the results of the first investigation of HR-QoL in patients with Gilles de la Tourette syndrome at the transition between adolescence and adulthood using a disease-specific HR-QoL measure, the Gilles de la Tourette Syndrome-Quality of Life-Children and Adolescents scale. Our results showed that patients with GTS and more severe co-morbid anxiety symptoms reported lower HR-QoL across all domains, highlighting the impact of anxiety on patient’s well-being at a critical stage of development. Routine screening for anxiety symptoms is recommended in all patients with GTS seen at transition clinics from paediatric to adult care, to implement effective behavioural and pharmacological interventions as appropriate.

Highlights

  • Gilles de la Tourette syndrome (GTS) is a neurodevelopmental disorder characterised by multiple motor and phonic tics [1]

  • We present the results of the first investigation of health-related quality of life (HR-QoL) in patients with Gilles de la Tourette syndrome at the transition between adolescence and adulthood using a disease-specific HR-QoL measure, the Gilles de la Tourette Syndrome-Quality of Life-Children and Adolescents scale

  • C&A-GTS-QOL total and subscale scores were lower in patients who reported more severe state and trait anxiety (Table 1)

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Summary

Introduction

Gilles de la Tourette syndrome (GTS) is a neurodevelopmental disorder characterised by multiple motor and phonic tics [1]. The average age at onset of GTS is around 7 years, and a significant reduction of tic severity after adolescence occurs in about one-third of cases [1]. Comorbid behavioural problems are reported by the majority of patients with GTS, especially attention-deficit and hyperactivity disorder (ADHD), obsessive–compulsive disorder (OCD), anxiety and affective disorders [1]. Clinical studies in children and adults with GTS have shown that both tics and behavioural symptoms can affect patients’ health-related quality of life (HR-QoL) [2]. Few data are available about the impact of GTS on HR-QoL at the transition between adolescence and adulthood, a crucial age for patients with tic disorders. Set out to investigate HR-QoL and its determinants in a clinical sample of adolescents and young adults with GTS using a disease-specific HR-QoL measure, alongside a comprehensive battery of psychometric instruments [3]

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