The TAA convened the Behavioral Sciences Consortium in 2001 in order to work collaboratively to develop nonpharmacological treatments for TS. Some of the leading minds in the TS Research space came together, developed a TS-tailored behavioral therapy and piloted research studies on the resulting treatment, known as Comprehensive Behavioral Intervention for Tics (CBIT). The BSC has published several studies on CBIT that substantiate the effectiveness of this behavioral therapy for TS treatment. With the successful dissemination of information about CBIT amongst our communities, and regular provider trainings in CBIT, the American Academy of Neurology released its first ever Treatment Guidelines for Tourette Syndrome and Tic Disorders; the guidelines list CBIT as the recommended first line of treatment for TS.
Furthermore, in 2019 the TAA received funding from the Patient Center Outcomes Research Institute to bring together many stakeholders (patients, parents, researchers, clinicians, etc.) to critically discuss the future of CBIT research. The research agenda for future CBIT research is currently under revision and the TAA looks forward to publishing it, as well as continuing to support to dissemination of CBIT nationwide.
What is CBIT?
CBIT is a non-medicated treatment consisting of three important components:
(a) Training the patient to be more aware of his or her tics and the urge to tic.
(b) Training patients to do competing behavior when they feel the urge to tic.
(c) Making changes to day to day activities in ways that can be helpful in reducing tics.
Many of these strategies are already commonly used in the management of TS symptoms. Many adults with TS report that they have come up with strategies similar to CBIT to manage their tics. CBIT takes the most effective concepts and blends them with strategies that aid people in learning the techniques quickly.
TS is a neurological disorder and tics are involuntary, so how can CBIT work?
There is no question that tics are neurological in nature. However, tics are often also extremely sensitive to the environment in which they occur. Every person with TS has experienced certain situations that make his or her tics worse. Similarly, most people with TS know that other situations or activities help calm their tics. CBIT attempts to help children and adults familiarize themselves and identify environmental factors that make their tics worse. CBIT also teaches skills on how to create environments that are more stable, predictable and easily manageable.
How effective is CBIT for somebody with TS?
Large, multi-site, National Institutes of Health-funded studies show that more than half of the people who undergo CBIT will have significant reductions in tic severity and improved ability to function. Complete elimination of all tics and other TS symptoms does happen occasionally in CBIT. CBIT is not a cure for TS but a tool that helps individuals better manage their tics and improves their quality of life.
Once mastered, will CBIT last a lifetime?
A recent study showed that 87% of participants who thrived with CBIT continued to do well six months after treatment. Remember CBIT is not a cure; it is a management strategy. Patients learn a set of management skills that can be applied for the rest of their lives as needed.