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

Abstract

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 The functional impact of Gilles de la Tourette syndrome across the lifespanGilles de la Tourette syndrome (GTS) is a life-long neurodevelopmental disorder defined by the presence of multiple motor and phonic tics [1]. Tics are repetitive, uncontrollable movements or vocalizations that usually present in childhood but may change with re- * 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: cavanna77@tin.it. gard to their location, frequency and severity over time [2]. GTS affects approximately 1% of school-age youngsters and is three to four times more common in males than females [3]. GTS is increasingly recognised as a complex disorder, with a wide spectrum of associated behavioural problems that can accompany the motor and phonic tics. These problems include ticrelated symptoms (ranging from socially inappropriate statements to actual self-harm) and co-morbid psychiatric disorders, such as obsessive-compulsive disorder (OCD) and attention-deficit hyperactivity disorder (ADHD) [4,5]. Large studies conducted both in clinical populations [2,6] and in the community [7] have consistently found that only about 10% of individuals with GTS do not present with behavioural co-morbidities.

Neurobiology of the Premonitory Urge in Tourette’s Syndrome: Pathophysiology and Treatment Implications

“…Moreover, 90% of patients present with co-morbid psychiatric disorders {31–33}, most commonly obsessive-compulsive disorder (OCD) {34–36} and attention-deficit and hyperactivity disorder (ADHD) {37,38}, although both affective disorders {39,40} and impulse control disorders {41–43} have also been shown to be associated with TS. Disease-specific health-related quality of life measures for patients with TS {44} have allowed a more accurate assessment of the differential impact of tics and behavioral symptoms on patients’ wellbeing {45}.…”

Tourette syndrome deep brain stimulation: A review and updated recommendations

“…The most common of these are ADHD and OCD. Comorbidities have a significant negative impact on the quality of life in TS and can be a larger source of impairment when compared with motor tics . Identification of comorbid psychiatric symptoms is critical for a DBS workup, because when left untreated, these symptoms may be the best predictors of a worse quality of life, with or without DBS therapy .…”

Histaminergic modulation in Tourette syndrome

“…Further implications of additional research into this field may include identification of families at risk of TS. Although TS is not known to shorten life expectancy, it can be highly detrimental to patients' health-related quality of life and psychosocial wellbeing [101][102][103]. Finally, recent observations that patients with TS can be prone to develop allergy related to histamine-associated immunological reactions prompt further investigations into the relationship between allergy, histamine and TS [104].…”