The quality of life of young people with Tourette syndrome

Islington Community CAMH, Northern Health Centre, 3rd Floor, 580 Holloway Road, London N7 6LB, UK.
Child Care Health and Development (Impact Factor: 1.69). 08/2009; 35(4):496-504. DOI: 10.1111/j.1365-2214.2009.00983.x
Source: PubMed


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.

1 Follower
20 Reads
  • Source
    • "Despite this assumption, the interplay between tic severity, impairment , and quality of life remains unclear among youth with CTDs. For instance, several reports have identified a modest association between tic severity and quality of life (Storch et al., 2007b; Cutler et al., 2009), whereas others have failed to find a significant relationship (Bernard et al., 2009; Eddy et al., 2011a). This ambiguous relationship is further complicated by research suggesting that cooccurring OCD and ADHD (Eddy et al., 2012), depressive symptoms (Muller-Vahl et al., 2010), negative self-perception (Khalifa et al., 2010; Eddy et al., 2011b), and social deficits (McGuire et al., 2013) can negatively impact quality of life for individuals with CTD. "
    [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 · 2.47 Impact Factor
  • Source
    • "Young people with tics are rated less favourably and less socially acceptable than those without tics, particularly if they have additional difficulties such as ADHD (Bawden, Stokes, Camfield, Camfield & Salisbury, 1998; Boudjouk, Woods, Miltenberger & Long, 2000; Friedrich, Morgan & Devine, 1996; Stokes, Bawden, Camfield, Backman & Dooley, 1991). Children have more difficulties with relationships within their wider social network (such as with classmates) than in sustaining close friendships (Cutler et al., 2009). Psychoeducational approaches for the child with TS and important others (i.e. "
    [Show abstract] [Hide abstract]
    ABSTRACT: Background Tourette syndrome (TS) is a poorly understood condition characterised by motor and vocal tics. It may affect children's social functioning at school. This study examined the impact of a psychoeducational intervention (classroom presentation) from multiple perspectives. Method We used a mixed-methods, multiple case-study design with interviews, focus groups and self-report questionnaires. Four children with TS, their parents, teachers and classmates (n=100) took part. ResultsQuestionnaire data showed an increase in classmates' knowledge and positive attitudes about TS postintervention. Qualitative data revealed two overarching themes: the impact on classmates in terms of enabling prosocial behaviours, and the impact on the child in terms of their embracing having TS. ConclusionA brief psychoeducational intervention enhances knowledge and attitudes of classmates towards children with TS, and improves how children with TS feel about the condition. Further research is needed to evaluate this approach with larger samples of children and to identify mechanisms of change. Key Practitioner Message Clinicians routinely recommend psychoeducational approaches for peers of individuals with Tourette Syndrome (TS) to improve knowledge and attitudes; however, there is little research into the effectiveness of this approach This study found that a classroom presentation about TS improved the knowledge and attitudes of the peers of a small number of children with TS The presentation was well received by peers and appeared to improve the self-confidence of the children with T5 and help them embrace their condition The findings suggest that clinicians should continue to recommend psychoeducation for peers of individuals with IS Further research is needed to evaluate this approach more systematically in a larger sample of children and to explore mechanisms for any changes found
    Child and Adolescent Mental Health 02/2014; 19(1). DOI:10.1111/camh.12000 · 1.44 Impact Factor
  • Source
    • "Medical and behavioural treatments can reduce the severity of symptoms (NICE 2008; Verdellen et al. 2011), but do not address the impact of having either (or both) condition(s) on an individual's social functioning. Children and adolescents with TS report that they struggle to fit in with society's expectations of normal behaviour (Storch et al. 2007; Cutler et al. 2009). Individuals with tics have been rated less favourably and as less socially acceptable than those bs_bs_banner Child: care, health and development "
    [Show abstract] [Hide abstract]
    ABSTRACT: Tourette syndrome (TS) and attention-deficit/hyperactivity disorder (ADHD) are common neurodevelopmental disorders that often co-occur. They are both stigmatized and misunderstood conditions. This review critically appraises studies examining interventions using psychoeducational approaches in TS and ADHD. Studies examining the impact of providing educational information (or diagnostic label) about TS and ADHD to parents, teachers and peers (child and adult) were identified by searching relevant electronic databases, reference lists and citations, and consulting colleagues. Twenty-two studies were identified, 20 of which involved teachers or peers. The studies indicate that providing educational information increases knowledge, positive attitudes and behaviours towards individuals with TS and ADHD. Provision of a diagnostic label alone appears insufficient. Parental education may improve treatment enrolment and adherence. While the findings are encouraging, there are a number of gaps in the literature. These include the effects of giving information to parents, whether changes are maintained over time, or are generalizable to the population. Studies are needed to investigate the optimal way to present educational information in everyday contexts in order to improve the lives of those with TS and ADHD.
    Child Care Health and Development 03/2013; 39(5). DOI:10.1111/cch.12039 · 1.69 Impact Factor
Show more