The quality of life of young people with Tourette syndrome
ABSTRACT The study examined a UK sample of 57 young people with Tourette syndrome (TS).
The purpose of this study was to consider the impact of TS on young people's Quality of Life (QoL).
The study used a mixed methods design, combining focus groups and questionnaire data. Child report questionnaires measured QoL and TS symptom severity.
The results showed that the QoL of children with TS was significantly worse than that of children in a UK normative sample. Analysis of transcripts from the groups identified four main themes; 'TS can be distressing and disabling', 'struggling to fit into society's expectations of normal behaviour', 'needing to control tics' and 'TS is one part of who I am'.
Poorer QoL was associated with increased symptom severity in terms of tics, Attention Deficit Hyperactivity Disorder diagnosis and obsessive compulsive behaviours.
SourceAvailable from: Joshua M. Nadeau[Show abstract] [Hide abstract]
ABSTRACT: 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. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.Psychiatry Research 12/2014; 225(3). DOI:10.1016/j.psychres.2014.11.045 · 2.68 Impact Factor
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ABSTRACT: Tourette syndrome (TS) among young people is associated with psychosocial difficulties and parents play an important role in the management of the condition. Clinical guidelines have been developed for the treatment of TS and tics, but little is known about how young people and their parents perceive their treatment options or their desired outcomes of treatment. The aim of this study is to explore perceptions of treatments for tics among young people with TS and their parents. In-depth interviews with 42 young people with TS and a mixed-methods, online survey of 295 parents of young people with TS. Participant recruitment was conducted through Tourettes Action (TA): a non-profit UK organisation for the support of people with TS. Interview transcripts were analysed using thematic analysis and responses to survey open-ended questions were analysed using content analysis. Triangulation of qualitative and quantitative data from the parents' survey and qualitative data from the interviews with young people was used to increase the validity and depth of the findings. A strong theme was the perception that health professionals have limited knowledge of TS and its treatment. Medication was a common treatment for tics and both young people and parents described benefits of medication. However, adverse effects were frequently described and these were a common reason for stopping medication among young people. Aripiprazole was viewed most positively. Access to behavioural interventions for tics was limited and 76% of parents wanted this treatment to be available for their child. Some young people had reservations about the effectiveness or practicality of behavioural interventions. Reduction and abolition of tics were desired outcomes of treatment, but both parents and young people also identified the importance of increasing control over tics and reducing anxiety-related symptoms. For young people, managing the urge to tic was an important outcome of treatment. The results suggest a need for more training in the identification and management of TS and wider availability of behavioural treatments. Clinical trials could explore the effectiveness of Aripiprazole used in combination with psycho-educational interventions to reduce anxiety and promote a sense of control.BMC Psychiatry 12/2015; 15(1):430. DOI:10.1186/s12888-015-0430-0 · 2.24 Impact Factor
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ABSTRACT: Quality of life (QoL) is a well-established outcome measure. In contrast to adult obsessive-compulsive disorder (OCD), little is known about the effects of treatment on QoL in children with OCD. This study aimed to assess QoL after cognitive behavioural therapy (CBT) in children and adolescents with OCD compared with the general population and to explore factors associated with potential changes in QoL after treatment. QoL was assessed in 135 children and adolescents (ages 7-17; mean 13 [SD 2.7] years; 48.1 % female) before and after 14 CBT sessions, using self-report and a caregivers proxy report of the Questionnaire for Measuring Health-related Quality of Life in Children and Adolescents (KINDL-R). QoL was compared with an age- and gender-matched sample from the general population. Before treatment, QoL was markedly lower in children with OCD compared with the general population. QoL improved significantly in CBT responders (mean score change 7.4), to the same range as QoL in the general population. Non-responders reported no QoL changes after treatment, except for one patient. Comorbidity, family accommodation and psychosocial functioning were not associated with changes in QoL after treatment. To our knowledge, this is the first study of the changes in QoL after treatment of paediatric OCD. The assessment of QoL beyond symptoms and function in children with OCD has been shown to be reliable and informative. The results of this study support the application of QoL assessment as an additional measure of treatment outcome in children and adolescents with OCD.European Child & Adolescent Psychiatry 12/2014; DOI:10.1007/s00787-014-0659-z · 3.55 Impact Factor