Exploring the Impact of Chronic Tic Disorders on Youth: Results from the Tourette Syndrome Impact Survey

Conelea, Christine A.; Woods, Douglas W.; Zinner, Samuel H.; Budman, Cathy L.; Murphy, Tanya K.; Scahill, Lawrence; Compton, Scott N.; Walkup, John T.

doi:10.1007/s10578-010-0211-4

Cited by 182 publications

(163 citation statements)

References 41 publications

(76 reference statements)

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“…This was part of a larger survey 212 that assessed the impact of TS on patients, but the current study specifically reports the results for questions on treatment utilisation, barriers to care and factors affecting the use of behavioural therapy. For the assessment of barriers to care, participants (465 adults and 487 children) were provided with a list of different statements to mark as yes or no according to whether or not they considered that item to be a barrier.…”

Section: Kompoliti Et Almentioning

confidence: 99%

Clinical effectiveness and patient perspectives of different treatment strategies for tics in children and adolescents with Tourette syndrome: a systematic review and qualitative analysis

Hollis

Pennant

Cuenca

et al. 2016

Health Technol Assess

135

109

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BackgroundTourette syndrome (TS) is a neurodevelopmental condition characterised by chronic motor and vocal tics affecting up to 1% of school-age children and young people and is associated with significant distress and psychosocial impairment.ObjectiveTo conduct a systematic review of the benefits and risks of pharmacological, behavioural and physical interventions for tics in children and young people with TS (part 1) and to explore the experience of treatment and services from the perspective of young people with TS and their parents (part 2).Data SourcesFor the systematic reviews (parts 1 and 2), mainstream bibliographic databases, The Cochrane Library, education, social care and grey literature databases were searched using subject headings and text words for tic* and Tourette* from database inception to January 2013.Review/research methodsFor part 1, randomised controlled trials and controlled before-and-after studies of pharmacological, behavioural or physical interventions in children or young people (aged < 18 years) with TS or chronic tic disorder were included. Mixed studies and studies in adults were considered as supporting evidence. Risk of bias associated with each study was evaluated using the Cochrane tool. When there was sufficient data, random-effects meta-analysis was used to synthesize the evidence and the quality of evidence for each outcome was assessed using the Grading of Recommendations Assessment, Development and Evaluation approach. For part 2, qualitative studies and survey literature conducted in populations of children/young people with TS or their carers or in health professionals with experience of treating TS were included in the qualitative review. Results were synthesized narratively. In addition, a national parent/carer survey was conducted via the Tourettes Action website. Participants included parents of children and young people with TS aged under 18 years. Participants (young people with TS aged 10–17 years) for the in-depth interviews were recruited via a national survey and specialist Tourettes clinics in the UK.ResultsFor part 1, 70 studies were included in the quantitative systematic review. The evidence suggested that for treating tics in children and young people with TS, antipsychotic drugs [standardised mean difference (SMD) –0.74, 95% confidence interval (CI) –1.08 to –0.41;n = 75] and noradrenergic agents [clonidine (Dixarit®, Boehringer Ingelheim) and guanfacine: SMD –0.72, 95% CI –1.03 to –0.40;n = 164] are effective in the short term. There was little difference among antipsychotics in terms of benefits, but adverse effect profiles do differ. Habit reversal training (HRT)/comprehensive behavioural intervention for tics (CBIT) was also shown to be effective (SMD –0.64, 95% CI –0.99 to –0.29;n = 133). For part 2, 295 parents/carers of children and young people with TS contributed useable survey data. Forty young people with TS participated in in-depth interviews. Four studies were in the qualitative review. Key themes were difficulties in accessing specialist care and behavioural interventions, delay in diagnosis, importance of anxiety and emotional symptoms, lack of provision of information to schools and inadequate information regarding medication and adverse effects.LimitationsThe number and quality of clinical trials is low and this downgrades the strength of the evidence and conclusions.ConclusionsAntipsychotics, noradrenergic agents and HRT/CBIT are effective in reducing tics in children and young people with TS. The balance of benefits and harms favours the most commonly used medications: risperidone (Risperdal®, Janssen), clonidine and aripiprazole (Abilify®, Otsuka). Larger and better-conducted trials addressing important clinical uncertainties are required. Further research is needed into widening access to behavioural interventions through use of technology including mobile applications (‘apps’) and video consultation.Study registrationThis study is registered as PROSPERO CRD42012002059.FundingThe National Institute for Health Research Health Technology Assessment programme.

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Section: Kompoliti Et Almentioning

confidence: 99%

Clinical effectiveness and patient perspectives of different treatment strategies for tics in children and adolescents with Tourette syndrome: a systematic review and qualitative analysis

Hollis

Pennant

Cuenca

et al. 2016

Health Technol Assess

135

109

View full text Add to dashboard Cite

show abstract

“…Conelea et al conducted a large internet-based survey involving 740 parents with children with chronic tic disorders (CTD) and 232 children in the youth sample (mean age 12 years; age range 10-17) [45]. The Tourette Syndrome Impact Survey for Children (TSIS-C) was developed specifically for this study in order to gather data on the functional impact of living with CTD from both parent and child perspectives.…”

Section: Studies Of Health Related-quality Of Life In Gilles De La Tomentioning

confidence: 99%

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

Cavanna

David

Bandera

et al. 2013

Behavioural Neurology

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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.

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“…23 The presence of co-occurring mental, emotional or behavioral conditions, or educational difficulties complicates the treatment of children with Tourette Syndrome as these children often require additional medical and educational services. 25 Although the presence and impact of co-occurring conditions among children with Tourette Syndrome are well-documented, [26][27][28] few studies have examined health care needs and health service use among these children. For example, children and adults with Tourette Syndrome have lower healthrelated quality of life as evidenced by lower scores on measures of psychological health and adaptive function; this lower quality of life appears to be associated with tic severity and co-occurring psychiatric conditions.…”

Section: Introductionmentioning

confidence: 99%

Health Care Needs of Children With Tourette Syndrome

et al. 2012

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To document the impact of Tourette syndrome on the health care needs of children and access to health care among youth with Tourette syndrome, parent-reported data from the 2007-2008 National Survey of Children's Health were analyzed. Children with Tourette syndrome had more co-occurring mental disorders than children with asthma or children without Tourette syndrome or asthma and had health care needs that were equal to or greater than children with asthma (no Tourette syndrome) or children with neither asthma nor Tourette syndrome. Health care needs were greatest among children with Tourette syndrome and co-occurring mental disorders, and these children were least likely to receive effective care coordination. Addressing co-occurring conditions may improve the health and well-being of children with Tourette syndrome. Strategies such as integration of behavioral health and primary care may be needed to improve care coordination.

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Exploring the Impact of Chronic Tic Disorders on Youth: Results from the Tourette Syndrome Impact Survey

Cited by 182 publications

References 41 publications

Clinical effectiveness and patient perspectives of different treatment strategies for tics in children and adolescents with Tourette syndrome: a systematic review and qualitative analysis

Clinical effectiveness and patient perspectives of different treatment strategies for tics in children and adolescents with Tourette syndrome: a systematic review and qualitative analysis

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

Health Care Needs of Children With Tourette Syndrome

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