Tourette Syndrome (TS) is a complex neurological disorder characterized by motor and vocal tics that affects 1/160 school-aged children. The Centers for Disease Control and Prevention (CDC) estimates that 50% of children go undiagnosed. In addition, 86% of children diagnosed with TS have also been diagnosed with at least one additional mental, behavioral, or developmental condition such as attention-deficit/hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), behavioral or conduct problems, anxiety problems, depression, autism spectrum disorder, learning disability, speech or language problems, or intellectual disability. In a survey conducted by the Tourette Association of America (TAA) in 2018, 51% of adults and 32% of children (as reported by parents/caregivers) said they had considered suicide or participated in self-harm. Further, 36% of adults and 42% of children felt the biggest challenge in managing TS was dealing with the co-occurring conditions.
There are many barriers that exist for individuals with TS and their families in seeking quality medical care and educational support. Thus, it is essential to increase awareness and understanding among parents, healthcare providers, and school-based professionals as to how TS and related co-occurring conditions can affect all areas of life. Moreover, increased dissemination efforts of evidence-based information about TS, associated conditions and burdens, and available treatments will help bridge the gap in barriers to care.
The national Tourette Association of America is currently in its fifteenth year of partnership with the CDC as a National Public Health Practice and Resource Center for Children with Tourette Syndrome, and is applying for continued partnership and support under Category B: Implementing Evidence-Based Health Promotion Programs for Children with TS. Founded in 1972 in Bayside, New York, the TAA is dedicated to making life better for those affected by Tourette Syndrome and Tic Disorders. As the premier nationwide organization serving this community, the Association works to raise awareness, fund research, and provide on-going support. Through this partnership, the TAA will continue to address the multifaceted issues and burdens by providing evidence-based information to promote the health and well-being of children with TS, as well as to enhance the professional education and outreach programs that were developed and implemented during the previous fifteen years of the cooperative agreement.
The TAA proposes to provide several activities that address the following key strategies: Provide Information/Consultation and Referral Programs (ICRP) as a channel to respond to questions and provide information; develop and disseminate targeted health communication programs and materials; and develop and deliver health education programs to achieve the project outcomes. The TAA recognizes the importance of collaborating with leading organizations both internal and external to the CDC in order to magnify the program’s efficacy and expand reach. Additionally, the TAA proposes to enhance technological capabilities for improved access to available resources. The TAA will use these approaches to reach the target population, which include individuals with TS, families and caregivers, medical, education, and allied professionals, and the general public. These efforts will include and expand to minority and underserved members of these populations, which include but is not limited to non-English speakers, communities in rural areas, and those with limited health literacy.
The primary outcome of the program is the promotion of health and well-being of children with TS. Through the partnership, the TAA seeks to achieve increased access and awareness to available support services and treatments for TS among the community, public, healthcare, and educational professionals; increased knowledge about TS among individuals receiving information or educational mate