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

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 ye...

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Main Authors: Andrea Eugenio Cavanna, Kate David, Valentina Bandera, Cristiano Termine, Umberto Balottin, Anette Schrag, Caroline Selai
Format: Article
Language:English
Published: Wiley 2013-01-01
Series:Behavioural Neurology
Online Access:http://dx.doi.org/10.3233/BEN-120296
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author Andrea Eugenio Cavanna
Kate David
Valentina Bandera
Cristiano Termine
Umberto Balottin
Anette Schrag
Caroline Selai
author_facet Andrea Eugenio Cavanna
Kate David
Valentina Bandera
Cristiano Termine
Umberto Balottin
Anette Schrag
Caroline Selai
author_sort Andrea Eugenio Cavanna
collection DOAJ
description 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.
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spelling doaj-art-5ac0f54d90fa40ba9591d31cdddd8d032025-02-03T06:46:20ZengWileyBehavioural Neurology0953-41801875-85842013-01-01271839310.3233/BEN-120296Health-Related Quality of Life in Gilles de la Tourette Syndrome: A Decade of ResearchAndrea Eugenio Cavanna0Kate David1Valentina Bandera2Cristiano Termine3Umberto Balottin4Anette Schrag5Caroline Selai6Sobell Department of Movement Disorders, Institute of Neurology and University College London, London, UKDepartment of Neuropsychiatry, BSMHFT and University of Birmingham, Birmingham, UKChild Neuropsychiatry Unit, Department of Experimental Medicine, University of Insubria, Varese, ItalyChild Neuropsychiatry Unit, Department of Experimental Medicine, University of Insubria, Varese, ItalyDepartment of Child Neurology and Psychiatry, IRCCS 'C. Mondino' Foundation, University of Pavia, Pavia, ItalySobell Department of Movement Disorders, Institute of Neurology and University College London, London, UKSobell Department of Movement Disorders, Institute of Neurology and University College London, London, UKGilles 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.http://dx.doi.org/10.3233/BEN-120296
spellingShingle Andrea Eugenio Cavanna
Kate David
Valentina Bandera
Cristiano Termine
Umberto Balottin
Anette Schrag
Caroline Selai
Health-Related Quality of Life in Gilles de la Tourette Syndrome: A Decade of Research
Behavioural Neurology
title Health-Related Quality of Life in Gilles de la Tourette Syndrome: A Decade of Research
title_full Health-Related Quality of Life in Gilles de la Tourette Syndrome: A Decade of Research
title_fullStr Health-Related Quality of Life in Gilles de la Tourette Syndrome: A Decade of Research
title_full_unstemmed Health-Related Quality of Life in Gilles de la Tourette Syndrome: A Decade of Research
title_short Health-Related Quality of Life in Gilles de la Tourette Syndrome: A Decade of Research
title_sort health related quality of life in gilles de la tourette syndrome a decade of research
url http://dx.doi.org/10.3233/BEN-120296
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