Affiliations: Sobell Department of Movement Disorders, Institute of
Neurology and University College London, London, UK | Department of Neuropsychiatry, BSMHFT and University
of Birmingham, Birmingham, UK | Child Neuropsychiatry Unit, Department of Experimental
Medicine, University of Insubria, Varese, Italy | Department of Child Neurology and Psychiatry, IRCCS
'C. Mondino' Foundation, University of Pavia, Pavia, Italy | Department of Neurology, Royal Free and University
College Medical School, London, UK
Note: [] Corresponding author: Dr. Andrea Eugenio Cavanna, MD, PhD.,
Department of Neuropsychiatry, The Barberry National Centre for Mental Health,
25 Vincent Drive, Birmingham B15 2FG, UK. Tel.: +44 0121 3012317; Fax: +44 0121
3012291; E-mail: [email protected]
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.
Keywords: Gilles de la Tourette syndrome, health-related quality of life, functional impairment, tics, behavioural problems
