Background: Tic disorders (TDs), including Tourette disorder, are characterized by body movements and vocalizations that are difficult to control and can cause problems in day-to-day life. Effective medications for treating TD exist, but, in many cases, they cause significant side effects that limit their usability. Comprehensive Behavioral Intervention for Tics (CBIT) is a therapy that teaches tic-management skills to reduce tic frequency and interference. Large controlled research studies have shown that CBIT reduces tics in children and adults about as much as medications, but without significant side effects. However, at present, patient demand for CBIT exceeds availability, and many patients do not have access to a local CBIT provider. Also, a smaller percentage of patients perceive CBIT to be a poor fit for their specific situation.
Proposed Solution: Researchers have been exploring options to make CBIT more available and to tailor it to different settings, but patient, family, and other stakeholder input is essential to understand how to do this most effectively. The project team is planning a two-day Treating Tourette’s Together conference in July 2019 that would bring together patients, clinicians, researchers, and other stakeholders to develop an agenda for a new generation of patient-centered CBIT research.
Activities: The proposed conference will bring together researchers, patients, families, clinicians, and other stakeholders to generate a list of goals and projects most wanted by patients and families. Additionally, the team will conduct patient, family, and clinician surveys before the conference to seek input from a large number of stakeholders.
Outcomes and Outputs: The primary outcome of this project will be a research agenda for patient-centered CBIT research. The project team expects that this research will lead to CBIT services that better fit patient and family needs, thus improving patient care and clinical outcomes. Tangible outcomes of this project include the research agenda, related lay and executive summaries, and a brief webinar. All of these will be made available publicly on the Tourette Association of America’s (TAA) website.
Patient and Stakeholder Engagement Plan: The team will engage individuals with TS and their families via TAA’s 160,000 members nationwide. Patients and families will be invited to attend the group with all expenses paid and an additional allocated stipend. Patients and families will also participate remotely and give input via preconference surveys. Via the TAA and professional organizations, the team will also invite clinicians and other relevant professionals to participate in conference and preconference activities.
Project Collaborators: Anchored by the TAA, the project team includes researchers, clinicians, Tourette parent/patient advocates, relevant professional organizations, and a community engagement specialist. Many members of the project team have been part of TAA-researcher partnerships that led to the development, testing, and dissemination of CBIT.