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

Department of Psychology, University of Wisconsin-Milwaukee, PO Box 413, Milwaukee, WI 53201, USA.
Child Psychiatry and Human Development (Impact Factor: 1.93). 10/2010; 42(2):219-42. DOI: 10.1007/s10578-010-0211-4
Source: PubMed


Prior research has demonstrated that chronic tic disorders (CTD) are associated with functional impairment across several domains. However, methodological limitations, such as data acquired by parental report, datasets aggregated across child and adult samples, and small treatment-seeking samples, curtail interpretation. The current study explored the functional impact of tics among youth in a large, "virtual" community sample. An Internet-based survey was completed by families with children who had CTD. The sample included 740 parents and 232 of their children (ages 10-17 years). The survey assessed impact across five functional domains: physical, social, familial, academic, and psychological. Health-related quality of life and perceptions of discrimination resulting from tics were also assessed. Results suggest that (1) youth with CTD experience mild to moderate functional impairment, (2) impairment is generally positively correlated with tic severity, (3) children with CTD plus one or more co-occurring psychiatric conditions tend to have greater functional impairment, and (4) a notable portion of youth with CTD experience discrimination due to tics. Implications and limitations of these findings are discussed.

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Available from: Christine Conelea, Aug 19, 2014
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    • "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. The relationship between tic severity and quality of life may be more nuanced as many youth with CTDs experience problems secondary to their tics (e.g., social interference, discrimination, peer victimization; Storch et al., 2007c; Conelea et al., 2011; Zinner et al., 2012) that can impact domains central to their quality of life to varying degrees. Although many individuals with CTDs report that tics subside in early adulthood (Bloch et al., 2006), tics often do not remit entirely and, at the least, a child must endure them for many years. "
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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.
    Psychiatry Research 12/2014; 225(3). DOI:10.1016/j.psychres.2014.11.045 · 2.47 Impact Factor
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    • "The impact that tics have on an individual's functioning and quality of life is also quite variable. Some individuals never seek medical attention for their tics and show no distress or functional impairment, while others face social stigmatization and impairment in social, academic, and/or occupational functioning (Conelea et al. 2011; Wand et al. 1988). Of particular importance to the current study is the social impact of having a CTD. "
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    ABSTRACT: Research has shown that both education about Tourette Syndrome (TS) and self-disclosure have a positive impact on how peers rate the social acceptability of an individual with TS. However, no studies have directly compared generic TS education and personally delivered self-disclosure on how they impact attitudes towards an individual with TS. In the current study, 197 participants viewed a short videotape of a male actor displaying tics, after which they were assigned to one of three groups. One group received no education, one group viewed a commercially available video in which several individuals with TS provided education about TS and discussed their personal experiences with the syndrome, and one group viewed a content-matched video of an actor displaying tics, providing TS education, and personally self-disclosing about his experience having TS. Results indicate that participants in both video conditions rated themselves as more knowledgeable about tics than those in the control condition. More importantly, results also show that participants who viewed the actor personally self-disclose about TS rated him as more socially acceptable than did individuals who either viewed the content-matched generic TS education video or who did not receive education.
    Journal of Developmental and Physical Disabilities 08/2013; 25(4). DOI:10.1007/s10882-012-9317-x · 1.56 Impact Factor
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    • "The survey was posted online continuously from July 2008 to January 2009. Since a detailed account of the survey is available elsewhere (Conelea et al., 2011), the present description of methodology is limited to a brief overview of the data collection procedure and descriptions of survey items included in the present analyses. A total of 1,135 parents/guardians consented to participate in the study and 740 met inclusion criteria (i.e., reported that their child had been formally diagnosed with a TS or a chronic tic disorder and was age 17 years or younger). "
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    ABSTRACT: Tics associated with Tourette syndrome (TS) are often preceded by aversive somatosensory experiences known as premonitory urges. These urges are highly prevalent among individuals with TS and appear to play a key role in tic expression. Despite the importance of premonitory urges, relatively little is known about environmental factors that may influence their severity. Some data suggest that experiencing environmental consequences for ticcing may increase the severity of premonitory urges, although evidence for this claim is limited. The present study tested this possibility using data from an Internet-based survey of 118 youth with TS and their parents. Results indicated that tic severity and urge severity were positively correlated with each other and with items measuring tic-related impact. Hierarchical linear regression analyses showed that the relationship between urge severity and tic-related impact persisted when accounting for comorbid psychiatric diagnoses and tic severity. These results are consistent with a behavioral model of TS and suggest that experiencing aversive consequences for ticcing may increase the severity of premonitory urges. Future research should further examine factors that influence premonitory urges and more completely test the behavioral model of TS.
    Journal of Obsessive-Compulsive and Related Disorders 01/2013; 2(1):37-42. DOI:10.1016/j.jocrd.2012.10.004 · 1.18 Impact Factor
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