Treating Tourette Together: An Agenda for Patient-Centered Research Focused on Comprehensive Behavioral Intervention for Tics
•A patient-centered approach was implemented to define comprehensive behavioral intervention for tics (CBIT) research priorities.•Priorities related to treatment access and improving broad functional outcomes.•Our approach efficiently identified actionable priorities for CBIT research. To establish...
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Veröffentlicht in: | Behavior therapy 2024-03, Vol.55 (2), p.263-276 |
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Format: | Artikel |
Sprache: | eng |
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Zusammenfassung: | •A patient-centered approach was implemented to define comprehensive behavioral intervention for tics (CBIT) research priorities.•Priorities related to treatment access and improving broad functional outcomes.•Our approach efficiently identified actionable priorities for CBIT research.
To establish a patient-centered agenda for research that will lead to effective, widespread availability, adoption, and utilization of evidence-based behavioral treatment of Tourette syndrome and other tic disorders (TDs), we planned and executed a multistage, collaborative “Treating Tourette Together” research planning project with researchers, clinicians, patients, families, and other interested parties. Priorities for future behavioral treatment research were solicited from these parties via anonymous community surveys, a 2-day research planning summit with 46 individuals representing key stakeholder groups, and community response to summit reports. Four high-priority research domains were identified: (a) expanding treatment access, (b) improving treatment outcomes, (c) optimizing treatment within a broader care model, and (d) evaluating outcomes beyond tic severity. Community-engaged participatory research models can efficiently delineate clear and actionable priorities for clinical research. This approach holds promise for improving the impact of clinical research in TDs and other neuropsychiatric disorders. |
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ISSN: | 0005-7894 1878-1888 |
DOI: | 10.1016/j.beth.2023.06.005 |