Treating Tourette Together: An Agenda for Patient-Centered Research Focused on Comprehensive Behavioral Intervention for Tics

被引:2
|
作者
Conelea, Christine A. [1 ,9 ]
Bennett, Shannon [2 ]
Himle, Michael [3 ]
Hamilton, Sara [4 ]
Hunt, Carolyn [5 ]
Shineman, Diana [6 ]
Mathews, Carol [7 ]
Capriotti, Matthew [8 ]
机构
[1] Univ Minnesota, Minneapolis, MN USA
[2] Weill Cornell Med Sch, New York, NY USA
[3] Univ Utah, Salt Lake City, UT USA
[4] Mother Individual Tourette Syndrome, Queens, NY USA
[5] Univ Calif San Francisco, San Francisco, CA USA
[6] Tourette Assoc Amer, Bayside, NY USA
[7] Univ Florida, Gainesville, FL USA
[8] San Jose State Univ, San Jose, CA USA
[9] Masonic Inst Developing Brain, 2025 East River Pkwy, Minneapolis, MN 55414 USA
基金
美国国家科学基金会; 美国国家卫生研究院;
关键词
Tourette; tic; patient-centered; therapy; PILOT TRIAL; THERAPY; DISORDERS; PREVALENCE; ENGAGEMENT; GUIDELINES; CHILDREN; YOUTH; IMPACT; ADULTS;
D O I
10.1016/j.beth.2023.06.005
中图分类号
B849 [应用心理学];
学科分类号
040203 ;
摘要
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 highpriority 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. Communityengaged 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.
引用
收藏
页码:263 / 276
页数:14
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