Living with tics: Reduced impairment and improved quality of life for youth with chronic tic disorders

Highlights

• Existing treatments focus on reducing tic severity rather than tic-related impairment.

• Youth with tic disorders often experience adverse psychosocial consequences due to tics.

• Treatment emphasized developing coping skills for psychosocial consequences of tics.

• Youth receiving LWT experienced reduced impairment and improved quality of life.

• Findings provide preliminary support for using LWT for youth with tic disorders.

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.

Introduction

Tourette Disorder and other chronic tic disorders (hereafter collectively referred to as CTDs) are neuropsychiatric conditions characterized by the presence of motor and/or phonic tics lasting at least a year. Approximately 0.3–0.8% of youth are estimated to be affected by CTDs (Centers for Disease Control and Prevention, 2009). Although tics are the hallmark symptom of CTDs, youth with CTDs regularly present with co-occurring psychiatric conditions [e.g., attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD), non-OCD anxiety disorders; Freeman et al., 2000; Specht et al., 2011; Lebowitz et al., 2012], social and emotional difficulties (Carter et al., 2000, Tabori Kraft et al., 2012, McGuire et al., 2013) and disruptive behaviors (Sukhodolsky et al., 2003, Tabori Kraft et al., 2012). Youth with CTDs experience significant impairment (Conelea et al., 2011) that often affects multiple domains of functioning (Storch et al., 2007a). Indeed, relative to their peers, youth with CTDs report a diminished quality of life (Storch et al., 2007b, Eddy et al., 2011b).

In response to the impairment and diminished quality of life reported by many youth with CTDs, interventions have focused on alleviating tic severity. A meta-analysis of randomized controlled trials (RCTs) of typical and atypical antipsychotic medications (e.g., haloperidol, risperidone) has demonstrated their efficacy in reducing tic symptom severity compared to placebo (Weisman et al., 2012). Although efficacious, these medications are frequently accompanied by side effects that may limit tolerability and acceptability (Scahill et al., 2006a). Similarly, a meta-analysis of RCTs of alpha-2 agonists medications (e.g., guanfacine, clonidine) demonstrated their efficacy in reducing tic symptom severity, albeit with modest results (Weisman et al., 2012). Behavior therapy (e.g., habit reversal training, comprehensive behavioral intervention for tics) has also demonstrated efficacy in reducing tic symptom severity in RCTs for youth and adults (Piacentini et al., 2010, Himle et al., 2012, Wilhelm et al., 2012), with a meta-analysis of behavior therapy RCTs identifying comparable treatment effects to antipsychotic medications (McGuire et al., 2014).

Although pharmacological and behavioral interventions both demonstrate efficacy in alleviating tic symptom severity, these treatments primarily focus on tic severity reduction predicated on the assumption that tic severity is wholly responsible for the impairment and diminished quality of life experienced by youth with CTDs. 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 co-occurring 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. Similarly, evidence-based treatments yield significant reductions in tic severity, but infrequently result in tic remission. Thus, youth with CTDs have to develop effective coping strategies for tics even when receiving evidence-based treatment. While experts acknowledge that tics can have adverse psychosocial consequences that may endure even after tics diminish and/or remit (Scahill et al., 2013), there has been limited research on helping youth with CTDs develop skills to cope with these psychosocial consequences. When adults with CTDs were surveyed about their experiences, many stated that they continued to feel different from peers because of their tics, relied on social avoidance to manage tics, experienced social impairment, and believed that tics contributed to other psychological problems (Conelea et al., 2013). Thus, adults with CTDs continue to experience considerable adverse psychosocial consequences associated with tics that likely started in childhood. Therefore, interventions are needed for youth that not only reduce tic symptom severity, but also provide skills to manage the adverse psychosocial problems associated with tics (Peterson and Cohen, 1998). Targeted interventions may mitigate the impairment caused by tics, positively impact quality of life during childhood and adolescence, and curtail social difficulties into adulthood.

Although co-occurring problems are recognized as an important aspect of treatment in evidence-based practice parameters (Murphy et al., 2013), few treatment protocols have attempted to target co-occurring problems among youth with CTDs (Scahill et al., 2006b, Sukhodolsky et al., 2009), and have not directly addressed the psychosocial challenges associated with tics themselves. To date, only a single open-label case series has examined an intervention to address associated negative social consequences of tics in youth with CTD. Storch and colleagues developed a modular cognitive behavioral intervention called Living with Tics (LWT) and found that it reduced tic-related impairment, improved psychosocial functioning, and increased quality of life among eight youth with CTDs (Storch et al., 2012). This therapeutic approach is important because it addresses aspects of treatment not directly targeted by existing pharmacological or behavioral interventions, and can serve as either a primary or adjunctive component of existing evidence-based interventions.

The current study extended up the preliminary findings by Storch et al. (2012) by incorporating additional modules into the LWT intervention and evaluating its efficacy relative to a waitlist condition of equal duration in a randomized controlled pilot trial. We hypothesized that the LWT intervention would be superior to the waitlist condition in reducing clinician-rated tic impairment and improving quality of life for youth with CTDs. Secondary aims explored the effects of the LWT intervention on tic symptom severity, obsessive-compulsive symptom severity, and anxiety symptom severity relative to the waitlist condition.