Tourette & Comprehensive Behavioral Intervention for Tics
This week on Real World Health Care, we continue our series on Movement Disorders with a conversation with Matthew Capriotti, PhD, associate professor of Psychology at San Jose State University. Dr. Capriotti, who collaborates actively with the Tourette Association of America (TAA) to conduct research, advocacy, and educational events, has spent the last decade conducting research on behavioral treatments for Tourette Syndrome as well as providing behavior-based clinical services to those with Tourette, other tic disorders and obsessive-compulsive disorders.
We spoke about the role of Comprehensive Behavioral Intervention for Tics (CBIT) and his work with Treating Tourette Together, a collaboration between the TAA, the Patient-Center Outcomes Research Institute and leading behavioral science researchers.
First Line Treatment for Tourette
Real World Health Care: Why is behavioral therapy an important strategy for people with Tourette?
Matthew Capriotti: The American Academy of Neurology recommends CBIT or behavioral therapy as a first line treatment for managing the symptoms of Tourette. These recommendations are based on large-scale, well controlled studies showing behavioral therapy is both effective and safe for children and adults. We also know it’s an option families desire.
When Tourette is diagnosed, usually around the ages of 5 to 8, some families may take a wait-and-see approach to tics, which tend to peak in severity in later childhood or early adolescence. Or perhaps they will try medication to manage symptoms. Those strategies may be helpful, but they give the child or their family a limited amount of agency in terms of actively managing tics.
CBIT gives both patients and their families specific skills they can implement to proactively manage tics in the moment, when they happen.
It is important to acknowledge that CBIT is not a cure for Tourette. The goal is not to eliminate tics completely; that is not realistic for any therapy. Instead, the goal is to teach skills that allow those with Tourette to manage tics on their terms, so they have fewer problems and can live the lives they want.
How it Works
RWHC: What can someone with Tourette expect when receiving CBIT?
MC: CBIT is typically conducted weekly, for about 10 weeks, although that can vary quite a bit based on the patient and their needs. The therapist will meet with the patient and their family and discuss how their tics have been over the last week, but the majority of the session focuses on exercises and skills to manage tics. Those skills involve what we call “competing responses,” which are physical postures or movements designed to interrupt a tic sequence or stop a tic from occurring when the urge arises.
During the exercise and skill-building portion of a session, the therapist may start by having a general conversation with the patient about something the patient is interested or involved in—school, sports, movies—or playing a game with the patient to mimic normal daily activities. During the conversation or game, the patient will practice detecting tics and implementing the competing response.
If the patient mentions issues with an arm-raising tic, for example, the competing response may be for the patient to put his hand on his thigh and his elbow against his body. We’ll practice this over and over again, with the therapist acting as a coach.
We’ll also work closely with the patient’s parents so they can learn the skills needed to help with the coaching, by praising their child when a competing response skill is used and giving them gentle reminders if they notice their child forgetting.
We also help the patient and their family identify situations in which tics are more frequent and teach them problem-solving skills for managing or changing those situations.
As therapists, our goal is not to be the “tic police.” We don’t mandate how often these skills are used. We also encourage parents to refrain from tic policing, in favor of supporting their child in more empowering ways. Instead, we work together with the patient and their family to establish individual goals, whether that’s using their skills 35 percent of the time, or 95 percent of the time. The key here is the skills themselves, and how they can be used in day-to-day life in ways that work for them and produce the results they want.
Treating Tourette Together
RWHC: How is Treating Tourette Together helping to advance CBIT and other behavioral therapies?
MC: We held a summit last summer to bring together a variety of stakeholders and set an agenda for the next generation of research. Traditional clinical research is very investigator-driven, and we wanted the entire Tourette community—patients, providers, and families—to also have a voice in determining priorities for research that would be useful to them. The summit identified four key priority research areas, which I’ll describe in no particular order.
One priority is expanding access to CBIT. Unfortunately, many with Tourette don’t have access to treatment because there aren’t any providers in their area, or because local providers don’t take their insurance, which creates a cost barrier to care. Telehealth, which seems to be to be just as effective as in-person CBIT in small studies, may play a role here, but we need larger-scale studies to determine its widespread feasibility.
A second research priority addresses how to improve CBIT and make it more efficient. We know CBIT works well and over half of those participating in it receive life-changing benefit. But that means that about half don’t get meaningful benefit or any benefit at all. We want to make the response rate even higher.
Third, because people with Tourette often have co-morbidities like ADHD and OCD, we need to better understand how CBIT fits within other care patients receive from other providers. When is the best time to receive CBIT? How does CBIT interact with medication and how should the two be sequenced? Where do we start?
Fourth—and this is an area we probably wouldn’t have identified without a cross-section of stakeholders—what other outcomes can we focus on besides tic reduction? How can behavioral health treatments improve a patient’s sense of self and reduce their stress? How can it help them be more productive in class, learn to drive more safely, or have healthier relationships?
CBIT: Keys to Success
RWHC: How can patients and their families approach CBIT to help ensure the best possible outcomes?
MC: Current evidence suggests that CBIT works well with youth ages 9-17 and adults ages 18-65. It has also been shown to work with patients who only have tics as well as those with other co-existing conditions like ADHD and OCD. The type of tics and their severity also don’t appear to have an impact on outcomes.
Dr. Shannon Bennett, I and a group of colleagues published a small study last year that looked at modifying CBIT to make it developmentally appropriate for younger children, ages 4-9. The results from that study looked promising, in that the patients in the study got better over the course of treatment and stayed better a year following treatment. However, larger, more well-controlled studies are needed in this area.
One thing all these studies have shown is that for treatment to work well, the patient and their family must actively want to manage their tics. They need to be willing to do the work and must be committed to weekly therapy sessions. Sometimes, there is a disconnect here between what the parents want and what the child wants. If the child isn’t ready or isn’t too worried about the impact of tics on his or her life, it’s not as effective. We never want to start treatment by forcing a child to do the work.
I would encourage parents to do some extra legwork to make sure they have a provider who really understands Tourette and can help them navigate the continuum of care their child needs. Fortunately, the earlier stigma around receiving treatment is eroding, which is gratifying to see. We still have a lot of work to do to improve CBIT and make it more available, as well as to keep getting accurate information about Tourette Syndrome and CBIT out there to the public.
About the Tourette Association of America
Founded in 1972, the Tourette Association of America (TAA) is dedicated to making life better for all individuals affected by Tourette Syndrome and Tic Disorders. As the only national organization serving this community, the TAA works to raise awareness, advance research, and provide ongoing support to patients and families. To support this, the TAA directs a network of 31 Chapters, 83 support groups and recognizes 20 Centers of Excellence across the country. For more information on Behavioral Therapies, Tourette Syndrome and Tic Disorders visit tourette.org.