Disease-Specific Quality of Life in Young Patients With Tourette Syndrome

Cavanna, Andrea E.; Luoni, Chiara; Selvini, Claudia; Blangiardo, Rosanna; Eddy, Clare M.; Silvestri, Paola R.; Calì, Paola V.; Gagliardi, Emanuela; Balottin, Umberto; Cardona, Francesco; Rizzo, Renata; Termine, Cristiano

doi:10.1016/j.pediatrneurol.2012.10.006

Cited by 40 publications

(37 citation statements)

References 18 publications

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“…As part of this assessment, youth's quality of life should be evaluated using either general quality of life measures that have demonstrated adequate psychometric properties in youth with CTD (Storch et al, 2007b), or more CTD specific quality of life measures (Cavanna et al, 2008). While CTD specific quality of life measures have demonstrated adequate psychometric properties in Italian youth with CTD (Cavanna et al, 2013a; Cavanna et al, 2013b), such measures still require further psychometric validation in English-speaking youth with CTD prior to their widespread use. After a thorough evaluation and clarification of treatment goals, clinical guidelines should be followed for youth and families seeking reductions in tic symptom severity (Murphy et al, 2013).…”

Section: Discussionmentioning

confidence: 99%

Living with tics: Reduced impairment and improved quality of life for youth with chronic tic disorders

McGuire

Arnold

Park

et al. 2015

Psychiatry Research

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Pharmacological and behavioral interventions have focused on reducing tic severity to alleviate tic-related impairment for youth with chronic tic disorders (CTDs), with no existing intervention focused on the adverse psychosocial consequences of tics. This study examined the preliminary efficacy of a modularized cognitive behavioral intervention ("Living with Tics", LWT) in reducing tic-related impairment and improving quality of life relative to a waitlist control of equal duration. Twenty-four youth (ages 7–17 years) with Tourette Disorder or Chronic Motor Tic Disorder and psychosocial impairment participated. A treatment-blind evaluator conducted all pre- and post-treatment clinician-rated measures. Youth were randomly assigned to receive the LWT intervention (n=12) or a 10-week waitlist (n=12). The LWT intervention consisted of up to 10 weekly sessions targeted at reducing tic-related impairment and developing skills to manage psychosocial consequences of tics. Youth in the LWT condition experienced significantly reduced clinician-rated tic-impairment, and improved child-rated quality of life. Ten youth (83%) in the LWT group were classified as treatment responders compared to four youth in the waitlist condition (33%). Treatment gains were maintained at one-month follow-up. Findings provide preliminary data that the LWT intervention reduces tic-related impairment and improves quality of life for youth with CTDs.

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Section: Discussionmentioning

confidence: 99%

Living with tics: Reduced impairment and improved quality of life for youth with chronic tic disorders

McGuire

Arnold

Park

et al. 2015

Psychiatry Research

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“…The range of needs that are identified at assessment should define the next steps in treatment and their prioritisation is a second reason why care pathways and treatments are so variable. For example, both clinical experience and several research studies 34,35,87,88 show that the emotional and behavioural problems which often accompany TS (psychiatric comorbidities) are more likely to contribute to impaired QoL than the tics themselves. So, for many children, the identification and treatment of mental health needs such as ADHD and OCD, or behavioural problems such as oppositional defiant disorder are the priority for treatment.…”

Section: Treatment Interventionsmentioning

confidence: 99%

“…Four studies (n = 161) provided very low-quality evidence (see Appendix 4, Tables [33][34][35]) that the stimulant drugs methylphenidate 113,124,125 and dexmethylphenidate 127 do not increase motor or vocal tics, impairment or global tics/impairment following 0-16 weeks of treatment. One study of methylphenidate reported increased rates of diastolic BP, systolic BP and heart rate that were dose dependent, 125 but other studies did not report adverse effects.…”

Section: Methylphenidate and Dexmethylphenidatementioning

confidence: 99%

“…After an initial publication on the reduced quality of life (QoL) in adult patients with TS, 33 there have been over a dozen or so studies investigating QoL in young people with TS (review and references) 7 and, more recently, a study by Cavanna et al 34 The conclusions that can be drawn from these are that patients with TS have a reduced QoL when compared with healthy controls, but have a better QoL than patients with epilepsy or other psychiatric illnesses. The reduced QoL is generally associated with unemployment, underachievement, increased tic severity, the presence of OCB, ADHD, anxiety and depression.…”

Section: Introductionmentioning

confidence: 99%

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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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“…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].…”

Section: Promising Avenues For Researchmentioning

confidence: 99%