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.

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    • "A UK study found school children with TS, aged between 8 and 18, had poorer quality of life self-ratings in the school domain compared to typically developing children[21]. In addition, qualitative focus group interviews with young people with TS revealed two particular challenges in school; that the effort to control tics was distracting and being different from peers may make students a target for bullying[21]. "
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    ABSTRACT: Background Tourette syndrome (TS) is a neurodevelopmental disorder characterised by motor and vocal tics. These involuntary movements and vocalizations can have a negative impact in the school environment. The paper presents a mixed methods description of the difficulties experienced by UK students with TS in secondary school, drawing on multiple perspectives. Methods Thirty-five young people with TS (11 to 18 years), their parents (n = 35) and key members of school staff (n = 54) took part in semi-structured interviews about TS-related difficulties in secondary school. Theme analysis was used to identify school difficulties reported by the young people, before moving on to analysis of the parents’ and staff members’ transcripts. The most frequently occurring themes from the young people’s accounts were then quantified in order to examine the level of agreement between informants and the association with clinical symptom severity. Results A range of TS-related difficulties with academic work, and social and emotional well-being in school were reported by young people, parents and staff. Three superordinate themes are described: 1) TS makes school work more difficult, 2) Negative response to TS from staff and fellow students and 3) TS makes it more difficult to manage emotions in school. The three difficulties most frequently reported by the young people were problems concentrating in class, unhelpful responses by school staff to tics and difficulties with other students such as name-calling and mimicking tics. Additional difficulties reported by more than a quarter of young people related to homework, examinations, writing, anxiety and managing anger in school. Having more severe motor tics was associated with reporting difficulties with homework and handwriting, whereas having more severe phonic tics was associated with reporting unhelpful responses from staff. Young people and parents agreed more strongly with each other than they did with staff regarding school difficulties faced by individuals, and staff generally reported fewer TS-related difficulties. Conclusions TS can present a barrier to learning in several ways and can also affect interactions with others and emotional experiences in secondary school. Implications for supporting secondary school-aged students with TS are considered.
    Full-text · Article · Jan 2016 · BMC Psychiatry
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    • "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. "
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    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.
    Full-text · Article · Dec 2014 · Psychiatry Research
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    • "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. "
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    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
    Full-text · Article · Feb 2014 · Child and Adolescent Mental Health
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