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.

Download full-text


Available from: Christine Conelea, Aug 19, 2014
  • Source
    • "Storch and colleagues (2007) examined the impact of tics, internalizing, and externalizing symptoms on parent reports of overall functioning and found that 24% of parents reported at least one significant tic-related problem in the " home " domain (e.g., going places, getting along with parents/siblings, sleeping, doing chores) and 39% reported at least one problem in the " home " domain related to their child's non-tic symptoms . In another study, Conelea et al. (2011) administered the Family Impact Questionnaire (Donenberg & Baker, 1993) via an online survey to 740 parents who had a child with CTD. This study found that scores on the negative impact scale (which measures parental perceptions of a child's negative impact on social life, finances, marriage, and siblings as well as negative feelings toward parenting ) were similar to those previously reported in samples of children with cerebral palsy and Down syndrome. "
    [Show abstract] [Hide abstract]
    ABSTRACT: Although tics are the defining feature of chronic tic disorders (CTD), many children experience comorbid internalizing and externalizing problems that contribute to impairment across several domains, including family functioning. The current study examined clinical correlates and predictors of caregiver strain in parents of children with CTD. Participants were 123 children and adolescents diagnosed with a CTD who participated in a randomized-controlled trial of behavior therapy for reducing tics. Results showed that a combination of disruptive behavior, inattention/hyperactivity, and tic intensity best explained objective strain, and a combination of inattention/hyperactivity and tic intensity were the best predictors of subjective caregiver strain. Implications of these findings for care providers are discussed.
    • "In both groups, common tics including eye blinking, head jerking, mouth movements, and simple vocalizations (McGuire et al., 2013). Likewise, across the age spectrum, those with CTDs may experience considerable impairment (Conelea et al., 2011, 2013) and a reduced quality of life (Jalenques et al., 2012; Storch et al., 2007). individual bothersome tics, largely due to small treatment samples and heterogeneous presentation of tics. "
    [Show abstract] [Hide abstract]
    ABSTRACT: This report examined the most frequently reported bothersome tics among individuals with chronic tic disorders and evaluated the improvement and remission of tics and their associated characteristics. Youths and adults (N = 240) were randomly assigned to receive the comprehensive behavioral intervention for tics (CBIT) or psychoeducation and supportive therapy (PST). At baseline, motor tics and tics with an urge were rated as more bothersome relative to vocal tics and tics without premonitory urges. The five most common bothersome tics included eye blinking, head jerks, sniffing, throat clearing, and other complex motor tics. While CBIT outperformed PST across tic type and urge presence, tics preceded by premonitory urges at baseline had higher severity at posttreatment across treatment condition. Six individual tic types had lower severity at posttreatment following CBIT relative to PST. Baseline urge presence was associated with tic remission for CBIT but not PST. Specific bothersome tics were more likely to remit with CBIT relative to PST. Findings suggest that individual tics respond and remit differently to CBIT relative to PST, with implications highlighting the negative reinforcement hypothesis in tic symptom maintenance. CLINICALTRIALS. NCT00218777; NCT00231985. Published by Elsevier Ltd.
    Behaviour Research and Therapy 07/2015; 70:56-63. DOI:10.1016/j.brat.2015.05.006 · 3.85 Impact Factor
  • Source
    • "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. "
    [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
Show more