EXECUTIVE SUMMARY

 REPORTS   

Background
As people living with TS, family members or providers who care for people with TS, and researchers studying TS, we all know that this is a complex condition. Effective treatment must be thoughtful, individualized, and comprehensive.  


In the last 20 years, our TS community has come together to develop, test, and spread the word about Comprehensive Behavioral Intervention for Tics (CBIT). CBIT is an eight-session, skills-based treatment in which a patient works with a therapist to learn skills that can help reduce the severity of that person’s tics, and to reduce tic-related challenges they are experiencing in their lives.

 

Large research studies have shown CBIT to be safe and effective for reducing tics in both children and adults (read more about CBIT here). Given CBIT’s effectiveness, the American Academy of Neurology’s recent Treatment Guidelines named CBIT as the recommended first-line treatment for TS. These experts recommend that most people with TS who want treatment for their tics should start with CBIT, rather than with medication (read more here).

 
We know that CBIT is not the only tool in the toolkit for living with TS. We are aware that there are other important issues for researchers and providers to address (for example, improving the accuracy and speed of diagnosis, continuing to study the genetics and/or biology of TS, and managing other “comorbid” conditions that can come along with tics), but the purpose of this effort was to focused on improving CBIT.

 
Now that CBIT has been proven effective, TS researchers and providers want to conduct the “next generation” of research to improve CBIT and increase its availability. Conducting research is critical for several reasons. It helps ensure that patients receive proven and effective treatments and that clinicians select and offer the best interventions. Research can also reduce health care costs by increasing the impact of services. It can help us to know the most effective methods for sharing effective treatment with others who need it and allow us to improve equality in healthcare access and health outcomes.

 

Treating Tourette Together Summit

We believe that input from the TS community is vital for guiding the future of CBIT research. This approach is sometimes called “patient-centered outcomes research” (read more here). In order to create a plan, we held a two-day Treating Tourette Together (TTT) Summit in Minneapolis, Minnesota in August 2019 for patients, families and caregivers, providers, and researchers. First, we got the word out to hundreds of people in the TS community and collected  opinions on CBIT from over 700 respondents in a survey. 


Over 100 of these individuals applied to attend the TTT Summit. While we wish we could have invited all applicants to attend, we had to select a smaller group to ensure that we could build community and work flexibly at the Summit.
Ultimately, we brought together a group of 45 individuals for the Summit, with representation from youth and adults with TS, parents of children with TS, healthcare providers and educators who work with people with TS, TS researchers, and other stakeholders.

 
We spent two days getting to know each other, hearing from each other’s experiences, and sharing thoughts about what is needed to improve the lives of people with TS. In the second half of this two-day Summit, we worked together to identify key research questions for this next generation of CBIT research. Our aim was to develop focused research questions that:

 
1. have not yet been studied, 
2. have the potential for high impact, 
3. are relevant to multiple stakeholders (e.g., patients, families, clinicians, payors), and 
are possible to test scientifically (e.g., the question would lead to an ethical and feasible study with  a testable hypothesis and measurable outcomes).

 
Key Research Areas
After the Summit, we organized this input  into 4 Key Research Areas that described the general types of research that attendees felt passionately about. 


Here, we list these domains, as well as specific Research Questions within each domain. Even though we number these below, each is considered equally important (for example, #3 isn’t a lower priority than #1). 


Key Research Domains and Sample Questions
Domain 1: Increasing Access to CBIT
Representative research questions include:


1. Children spend a lot of time in school. Can we train school-based providers (e.g., guidance counselors, school OTs) to provide CBIT effectively in school settings?
2. Currently, there are not enough CBIT providers for all of the people with TS who want CBIT. What are the most effective ways to train more providers in CBIT?
3. Many people TS have to see more than one doctor, or wait a long time to get diagnosed and connected to quality care. What is the best way to train general doctors (such as pediatricians and family doctors) to recognize TS and provide appropriate education, resources, treatment recommendations, and referrals?


Domain 2: Increasing CBIT’s Effectiveness 
Representative research questions include:


1. CBIT in its current form does not work for everyone. Can we improve CBIT outcomes by figuring out what makes it work more, or less, well for some people? This would include looking at numerical information from studies, and also talking with people who have received CBIT about ways to improve it.
2. CBIT involves a number of different parts. Can we make CBIT more efficient by identifying its most “active ingredients”? 
3. Many people with TS do not feel that CBIT is a good fit for them. Can we create a “CBIT Readiness Interview” to explain what CBIT is, discuss concerns, and possibly increase patients’ desire to do CBIT?


Domain 3: Optimizing How CBIT Fits into Individuals’ Broader TS Care
Representative research questions include:


1. People with TS are likely to use multiple kinds of treatments, such as medications and CBIT. What are the best sequences of treatment for TS (for example, CBIT followed by medication, or vice versa)? And, can we identify who will benefit from one treatment sequence instead of another?
2. Many patients who want CBIT have to wait a long time on waitlists to get it. Can we help people with TS find relief more quickly by having them start with an online,self-help version of CBIT, and then move on to CBIT with a therapist if self-help is not effective for them?
3. Many patients live too far from CBIT providers for weekly visits. Can we evaluate whether other CBIT formats work just as well, such as doing CBIT over videochat or doing a short, intensive “CBIT Bootcamp” (called “intensive outpatient treatment” by healthcare providers)?
4. Many people with TS take tic-reducing medications but wish they did not have to. Can CBIT be used as a tool to get off of these medications?
5. How well does CBIT work compared to medication alone, and the combination of CBIT and medication used simultaneously?

Domain 4: Investigating CBIT’s Impact on Outcomes that Matter to People Living with TS
Representative research questions include:


1. TS impacts many aspects of a person’s life. Can we evaluate CBIT’s effects on the things that patients care about other than tic severity and general “tic-related problems”? These could include self-esteem, confidence, perceived control over tics, time spent in class, ability to drive, etc.


Read more in the complete Research Agenda

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