Health-Related Quality of Life in Gilles de la Tourette Syndrome: A Decade of Research

Andrea Eugenio Cavanna,Valentina Bandera,Kate David,Umberto Balottin,Cristiano Termine,Caroline Selai,Anette Schrag

doi:10.1155/2013/732038

Abstract

Gilles de la Tourette syndrome (GTS) is a neurodevelopmental condition characterised by multiple motor and phonic tics and associated behavioural problems, carrying a significant burden on patients' lives. Although the term health related-quality of life (HR-QOL) has only been used in recent years, several studies have long addressed the impact of GTS on physical, psychological and social aspects of wellbeing of both children and adults with GTS. We set out to answer the question "Is HR-QOL affected by GTS and, if so, in what domains?" by conducting a systematic literature review of published original studies addressing HR-QOL in both children and adult patients with GTS. This review focuses on the current evidence on the impact of GTS on patients' lives, mainly informed by studies using generic functional impairment and HR-QOL measures from the last decade, and expands on the new opportunities introduced by the recently developed GTS-specific HR-QOL scales (GTS-QOL and GTS-QOL-C&A). Analysis of the first decade of studies specifically addressing HR-QOL in GTS suggests that co-morbid conditions are key factors in determining HR-QOL in young patients, whilst the picture is more complex in adults with GTS. These findings offer some general directions for both current clinical practice and future research.

Highlights

Gilles de la Tourette syndrome (GTS) is a neurodevelopmental condition characterised by multiple motor and phonic tics and associated behavioural problems, carrying a significant burden on patients’ lives
Consistent findings have shown that much of the psychosocial and behavioural dysfunction in children with tic disorders appears to be a consequence of co-morbid attention-deficit hyperactivity disorder (ADHD), which is highly associated with disruptive behaviour and functional impairment [17,18,19,20]
The results of the multiple linear regression analysis showed that tic severity, premonitory urges and family history of GTS could be identified as predictors during childhood of a poorer health related-quality of life (HR-QOL) in adults with GTS [48]

Summary

The functional impact of Gilles de la Tourette syndrome across the lifespan

Gilles de la Tourette syndrome (GTS) is a life-long neurodevelopmental disorder defined by the presence of multiple motor and phonic tics [1]. Eddy et al enrolled 50 young people (mean age 13 years; age range 10–17) with a DSM-IV-TR validated diagnosis of GTS to investigate the clinical correlates of HR-QOL [43] These authors administered a battery of six standardized psychometric measures along with a generic HR-QOL questionnaire, the Youth Quality of Life Instrument-Research version (YQOL-R), consisting of ‘perceptual’ and ‘contextual’ items. Conelea et al explored the functional impact of tics in adults using a sample of 672 participants with a self-reported CTD (mean age 35,5 years; range 18– 77 years) They assessed the impact of tics on physical, social, occupational/academic, and psychological functioning using the Tourette Syndrome Impact Survey (TSIS Scale) and the Sheehan Disability Scale (SDS). The results of the multiple linear regression analysis showed that tic severity, premonitory urges and family history of GTS could be identified as predictors during childhood of a poorer HR-QOL in adults with GTS [48]

The GTS-QOL: A disease-specific HR-QOL measure

Findings

Preliminary conclusions and suggestions for future research