Treating Tourette Together: An Agenda for Patient-Centered Research Focused on Comprehensive Behavior Therapy for Tics

Abstract

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 TDs who want CBIT. What are the most effective ways to train more providers in CBIT?3. Many people with TDs 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 TDs and provide appropriate education, resources, treatment recommendations, and referrals? Domain 2: Increasing CBIT's EffectivenessRepresentative 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 TDs 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 Care for TDsRepresentative research questions include:1. People with TDs are likely to use multiple kinds of treatments, such as medications and CBIT. What are the best sequences of treatment for TDs (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 TDs find relief more quickly by having them start with an online,selfhelp 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 TDs 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? Full ...

Tourette syndrome research highlights from 2023

“…Treatment guidelines published by the American Academy of Neurology (AAN) (Pringsheim et al 2019) Conelea and colleagues initiated a project involving researchers, clinicians, patients, and families with the aim to identify future priorities for research of BT for TS/CTD (Conelea et al 2024). Key research domains were identified through anonymous community surveys.…”

“…Another domain identified by the survey conducted by Conelea and colleagues was ways to improve treatment outcomes, which in turn may be linked to identifying the underlying working mechanisms of BT (Conelea et al 2024). A proposed working mechanism of BT is within-session habituation to aversive sensations preceding tic occurrence (i.e., premonitory urges).…”