The Clinician's Guide to Treatment and Management of Youth with Tourette Syndrome and Tic Disorders

Joseph F. McGuire, Tanya K. Murphy, John Piacentini, Eric A. Storch

• Publisher: Academic Press
• Year: 2018
• Print ISBN: 9780128119808
• eBook ISBN: 9780128119815
• Topic: Psychology
• Subtopic: Clinical Psychology
• Index: Psychology

The Clinician's Guide to Treatment and Management of Youth with Tourette Syndrome and Tic Disorders provides clinicians with cognitive behavioral therapy concepts and skills to manage young patients dealing with Tourette Syndrome (TS) and tic disorders. This book focuses on improving the quality of life, patient resiliency, habit reversal techniques, talking about tics with peers, and overcoming tic-related avoidance. Each chapter looks at the nature and background of common challenges for youth with TS experience, reviews empirically-informed rationale for using specific cognitive-behavioral strategies, discusses the nature and implementation of these strategies, and concludes with a case that illustrates a particular strategy. Medication management is covered in its own chapter, and clinical excerpts are used throughout the book to illustrate key techniques that can be incorporated into immediate practice. - Explores behavioral treatments for improving Tourette Syndrome (TS) and tic disorders - Addresses emotion regulation, anger management and disruptive behaviors - Presents material in a practical, ready-to-use format for immediate clinical use - Highlights how to improve self-esteem, social interactions and coping in school environments - Details case examples for better understanding of treatment practices - Identifies empirical evidence for best practices in clinical treatment

Chapter 1

Introduction to Treatment and Management of Youth With Tourette Disorders and Tic Disorders

Joseph F. McGuire, PhD¹, Tanya K. Murphy, MD, MS^2,3,4, John Piacentini, PhD⁵ and Eric A. Storch, PhD⁶, ¹Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, United States, ²Department of Pediatrics, University of South Florida, Tampa, FL, United States, ³Department of Psychiatry and Behavioral Neurosciences, University of South Florida, Tampa, FL, United States, ⁴All Children’s Hospital, Johns Hopkins Medicine, St. Petersburg, FL, United States, ⁵Semel Institute for Neuroscience and Human Behavior, University of California, Los Angeles, Los Angeles, CA, United States, ⁶Menninger Department of Psychiatry and Behavioral Sciences, Baylor College of Medicine, Houston, Texas, United States

Abstract

This chapter outlines the rationale for a comprehensive intervention for youth Tourette disorder and other tic disorders (TDs). It provides a description of the chapters included in this book, discusses how to utilize the skills and information included in this book, offers recommendations for assessments within the context of this intervention, and concludes with guidance on how to tailor the intervention for each individual patient.

Keywords

Tourette syndrome; tic disorders; behavior therapy; cognitive behavior therapy; medication management; assessment; rating scales; personalizing treatment

Management of Tic Disorders

Tourette syndrome and other tic disorders (TDs) are neuropsychiatric conditions characterized by the presence of motor and/or vocal tics (American Psychiatric Association, 2013). Although tics are the hallmark feature of TDs, youth with TDs commonly suffer from co-occurring psychiatric conditions like anxiety disorders, attention deficit hyperactivity disorder (ADHD), and obsessive–compulsive disorder (OCD) (Freeman et al., 2000). Together, tics and these co-occurring psychiatric symptoms can contribute to a wide range of physical (e.g., bodily harm to tics), social (e.g., poor self-perception, peer teasing), emotional (e.g., symptoms of anxiety, depression, suicidal ideations), and behavioral problems (e.g., aggressive and/or disruptive behaviors). As such, it is not surprising that youth with TD have been reported to experience impairment across multiple domains (e.g., school, social, home) (Storch, Lack, et al., 2007) and a diminished quality of life (Conelea et al., 2011; Storch, Merlo, et al., 2007). Therefore, effective treatments are needed to efficiently manage tics and associated problems.

Two principle evidence-based interventions exist for youth with TD: pharmacotherapy and behavior therapy. Historically, psychotropic medications such as antipsychotics (e.g., haloperidol, pimozide, risperidone, ziprasidone, and aripiprazole), and more recently alpha-2 agonists (e.g., clonidine, guanfacine) have been used to managed tic symptom severity (Scahill, Erenberg, et al., 2006). Antipsychotic medications have been found to produce moderate sized reductions in tic symptom severity, with no significant difference noted between medication types in terms of efficacy (Weisman, Qureshi, Leckman, Scahill, & Bloch, 2013). Meanwhile, alpha-2 agonists have been found to produce more modest reductions in tic symptom severity on the whole, but appear to have larger treatment effects among youth who present with both TD and ADHD (Weisman et al., 2013). Although pharmacotherapy significantly reduces tic symptom severity, many troublesome tics remain even among treatment responders. Moreover, these medications are often accompanied by side effects that can limit long-term tolerability (e.g., weight gain, sedation, etc.) (Scahill, Erenberg, et al., 2006).

Behavior therapy serves as the other evidence-based intervention for reducing tic symptom severity. Behavior therapy is a broad term for behavioral interventions that use behavioral strategies to minimize the expression of tics. Multiple types of behavioral interventions have been evaluated in randomized controlled trials: habit reversal training (HRT), mass negative practice, awareness training, exposure response prevention, and comprehensive behavior intervention for tics (CBIT) (McGuire, Ricketts, et al., 2015). However, only HRT and CBIT have consistently demonstrated efficacy across these clinical trials and meta-analyses, with moderate-to-large effects (McGuire et al., 2014; Piacentini et al., 2010; Wilhelm et al., 2012). HRT is a multi-component intervention that can consist of psycho-education, awareness training, competing response training, generalization training, self-monitoring, relaxation training, behavioral rewards, motivational procedures, and social support (McGuire, Ricketts, et al., 2015). Despite containing multiple components, the core therapeutic skills of HRT are suggested to be awareness training, competing response training, and social support (Woods, Miltenberger, & Lumley, 1996). Meanwhile, CBIT utilizes these core HRT components in combination with relaxation training and behavioral rewards, and incorporates functional assessments and function-based interventions to mitigate daily life factors that can exacerbate tic symptoms (Woods et al., 2008). While behavior therapy produces significant reductions in tic symptom severity, a considerable percentage of youth do not achieve a clinically significant response, with tics persisting even among treatment responders (Piacentini et al., 2010). Moreover, youth may have difficulty consistently refraining from tic engagement due to age, comorbid conditions, and/or experience difficulty recognizing premonitory urges.

The Need for Comprehensive Intervention

Practice parameters recommend behavior therapy for youth with moderate tic symptom severity, with the combination of behavior therapy and pharmacotherapy recommended when tics are severe (Murphy, Lewin, Storch, & Stock, 2013). Despite reducing tic symptom severity, these two treatment options are predicated on the assumption that tics and tic symptom severity are entirely responsible for the problems, impairment, and poor quality of life that youth with TD experience. While this may be true for some, it is not representative of all youth with TD. Moreover, even when receiving evidence-based treatment individually or in combination with pharmacotherapy, the efficacy of these interventions is not sustained indeterminately and symptom remission is rare. Thus youth have to learn to manage the more obvious tic symptoms at least on an intermittent basis, even when receiving evidence-based care.

While current evidence suggests that tic symptom severity substantially subsides in youth with TD by early adulthood (Bloch et al., 2006), experts acknowledge that tics can have adverse psychosocial consequences that may endure even after tics diminish and/or remit (Scahill et al., 2013). These psychosocial consequences may manifest in a variety of ways. For instance, youth with TD may become overly dependent on parents and/or family accommodation due to tics (Storch et al., 2017). Additionally, youth with TD may develop a poor sense of self-concept due to personalization of the illness (e.g., “I have Tourette’s”) or focus on negative self-attributes related to the illness state (e.g., “I’m odd”, “I have few friends”) (Hanks, McGuire, Lewin, Storch, & Murphy, 2016), rather than on areas of strength and resilience (e.g., “I am unique”, “the friends I have are quality”). Furthermore, youth with TD may become reliant on maladaptive coping strategies developed early in life for the physical, social, and emotional problems associated with tics (e.g., avoidance, withdrawal, substance abuse)—which can persist into adulthood even if tics subside or remit. Indeed, when adults with TD were surveyed about their experiences, many reported that they continued to feel different from peers because of their tics, used social avoidance to manage their tics, experienced social impairment, and believed that tics had contributed to other psychological problems (Conelea et al., 2013). In short, adults with TD continue to experience the adverse psychosocial consequences associated with tics that likely began in childhood. Thus in almost every circumstance, youth must have to endure tics and their psychosocial consequences for many years to come.

Living With Tics

There has been limited research on helping youth with tics develop skills to efficiently and effectively cope with adverse psychosocial consequences and manage co-occurring problems. Specifically, there is a need for interventions that not only reduce tic symptom severity, but also provide the skills to manage the adverse psychosocial consequences of tics and common co-occurring problems. While a few treatment protocols have attempted to target the specific cooccurring problems among youth with TD (i.e., aggression and/or disruptive behaviors, Scahill, Sukhodolsky, et al., 2006; Sukhodolsky et al., 2009), only two studies directly addressed the psychosocial challenges associated with tics themselves (McGuire, Arnold, et al., 2015; Storch et al., 2012). Storch et al. (2012) developed a modular cognitive behavioral therapy (CBT) intended to promote resiliency and coping skills to manage the psychosocial consequences of tics among youth with TD. In this adaptive intervention, the clinician conducts a thorough assessment to identify the specific problems youth experience due to tics. Afterward, clinicians select the most appropriate CBT modules to reduce the identified impairment related to tics. In this preliminary evaluation, the eight participating youth exhibited significant reductions in tic symptom severity and tic impairment on the Yale Global Tic Severity Scale (YGTSS), and also experienced improved self-concept and quality of life (Storch et al., 2012). McGuire, Arnold, et al. (2015) extended these initial findings in a randomized controlled trial and incorporated additional therapeutic modules into the intervention. In this study, 24 youth with TD were randomly assigned to either the modular CBT or a waitlist condition of equal duration. Youth in the intervention group exhibited significantly reduced tic impairment and improved quality of life compared to the waitlist condition. There were also large clinically meaningful improvements in tic symptoms severity and obsessive–compulsive symptom severity relative to the waitlist condition, which did not achieve statistical significance due to the small sample size. However, all acute treatment gains were maintained at a one-month follow-up assessment.

Purpose of This Book

This book serves as a synthesis and extension of the two studies by Storch et al. (2012) and McGuire, Ricketts, et al. (2015), McGuire, Arnold, et al. (2015). It uses the CBT modules developed for these studies as a basis for chapters, and incorporates the clinical experience of veteran tic clinicians to expand upon and further refine these CBT modules. It takes a comprehensive approach to the management of TDs by providing clinicians with expert guidance on managing tics with pharmacotherapy and behavior therapy, as well as managing the common cooccurring problems and the adverse psychosocial consequences of tics using empirically informed strategies. Thus the ultimate goal of this treatment guide is not necessarily to make tics “go away.” Rather, this intervention seeks to minimize tic impairment and improve quality of life by reducing tic symptom severity, addressing cooccurring problems, developing effective coping strategies for tics, and cultivating resiliency among patients with TD. As noted above, this comprehensive approach to managing TD in youth may play a key role in preventing a negative developmental trajectory that can lead to poor self-concept, result in maladaptive coping strategies (e.g., avoidance, accommodation, withdrawal, and substance abuse), and lead to an overall poor quality of life.

Presenting the Treatment Approach to Youth and Parents

The goal of treatment is to reduce tic symptom severity, minimize tic impairment, manage distress, develop effective coping skills, and improve quality of life of youth with TD. This modular adaptive intervention works toward this goal by providing psychoeducation to youth and families about TD (Chapter 2: Psychoeducation About Tic Disorders and Treatment), evidence-based approaches to manage tic symptom severity (Chapters 3: Habit Reversal Training and 4: Pharmacological Management of Tic Disorders in Youth), strategies to overcome maladaptive cognitions/perceptions (Chapters 5: Cognitive Restructuring About Tics and 6: Improving Self-Esteem for Youth With Tourette Syndrome and Tic Disorders), management of social and educational concerns (Chapters 7: Talking about Tics With Peers and Coping in Social Interactions, 8: Tourettes in the Classroom: Support and Guidance on Education Issues for Clinicians, and 9: Overcoming Tic-Related Avoidance), difficulties with executive functioning (Chapter 10: Problem Solving Strategies to Overcome Common Challenges Associated With Tourette Syndrome), managing anger/disruptive behaviors (Chapters 11: Brief Trans-Diagnostic Parent Training: A Strengths-Based, Parent-Centered Treatment for Youth With Tourette Syndrome and 12: Assessing and Treating Emotion Dysregulation and Anger Management), creating healthy lifestyles and habits (Chapters 13: Mindfulness for Tics and 15: Promoting Healthy Behaviors), and coping with family issues (Chapter 14: Family Issues Associated With Tics). The book concludes with a discussion of relapse prevention and strategies to move forward in the patients care depending on their response to intervention (Chapter 16: Relapse Prevention Strategies and Guidance on Refractory Cases).

When presenting this approach to treatment to youth and families, a clinician might state the following:

The goal of this treatment is to help you (and your family) cope with having tics, so that they don’t get in the way and bother you so much. This means helping you manage your tics with medication (if needed) and behavioral st...

Table of contents

• Cover image
• Title page
• Table of Contents
• Copyright
• Dedications
• List of Contributors
• Chapter 1. Introduction to Treatment and Management of Youth With Tourette Disorders and Tic Disorders
• Chapter 2. Psychoeducation About Tic Disorders and Treatment
• Chapter 3. Habit Reversal Training for Tics
• Chapter 4. Pharmacological Management of Tic Disorders in Youth
• Chapter 5. Cognitive Restructuring About Tics
• Chapter 6. Improving Self-Esteem for Youth With Tourette Syndrome and Tic Disorders
• Chapter 7. Talking About Tics With Peers and Coping in Social Interactions
• Chapter 8. Tourette’s in the Classroom: Support and Guidance on Education Issues for Clinicians
• Chapter 9. Managing Avoidance and Accommodation of Tics and Related Behaviors
• Chapter 10. Problem-Solving Strategies to Overcome Common Challenges Associated With Tourette Syndrome
• Chapter 11. Brief Trans-Diagnostic Parent Training: A Strengths-Based, Parent-Centered Treatment for Youth With Tourette Syndrome
• Chapter 12. Assessing and Treating Emotion Dysregulation and Anger Management
• Chapter 13. Mindfulness for Tics
• Chapter 14. Family Issues Associated With Tics
• Chapter 15. Promoting Healthy Behaviors
• Chapter 16. Relapse Prevention Strategies and Guidance on Refractory Cases
• Index