Among neuropsychiatric disorders, tic disorders including Tourette syndrome, affects a large numberof children: approximately 1% of those in the general population and up to 20% of students inExceptional Student Educational classrooms. Of those with a chronic course, the illness spans mostof their pediatric development as many cases develop in preschool and persist through lateadolescence. Tic disorders are often associated with adverse developmental outcomes orcomorbidities that can have a major impact on life adjustment even into adulthood. Althoughevidence-based interventions for tics and associated conditions (e.g., OCD, ADHD) currently exist,the interaction of treatment with the clinical presentation across development has not been fullyrealized. Moreover, due to developmental shifts in decision making power and in relationships withparents and peers, utilization of health care services likely will change as children mature; yet, thefactors that influence this change are not well understood. We also know that some individuals withsevere TS show remarkable resiliency and adapt well against the apparent odds but we know littleabout what makes one child with tics more resilient and why another begins to lead a life of disability.Efforts to devise and test interventions to improve equitable access to treatment must be preceded bycareful exploration of these individual and community based dynamics, best achieved in a parallelquantitative-qualitative research design. To better understand resources, services and medical risksacross youth development, we propose to examine existing insurance database of youth identifiedwith tics in comparison to those with ADHD and to those without neuropsychiatric disorders (N=300per group). Concurrently, we plan to intimately examine the lived experiences and perspectives ofyouth in their day to day challenges of adjusting to a visibly apparent neuropsychiatric illness byqualitative process via experience sampling (N=100) and focus group (N=40) with youth and theircontacts at the center and in the field. By combining both quantitative and qualitative data, we willbetter understand components of youth presentation that lead to poor as well as good illnessadaptation by converging the characteristics of services received via database analysis with thequalitative experiences of youth via experience sampling (qualitative interviews of selected schooldistrict teachers/ personnel and medical treatment providers) and focus groups. From this collectedinformation, a survey will be developed to test and expand on the needs and perspectives of anadditional 150 youth identified as having tics. This proposal will generate information aboutcontinuities and discontinuities of clinical presentation, perception of self, access to care, andtreatment strategies spanning four developmental phases (early and middle childhood, and early andlate adolescence) that will allow us to identify characteristics of each phase for those most at risk forpersistent unmet treatment needs and for poor outcomes.
/SUMMARY Tourette syndrome is a disorder that can have a chronic course with the more severe presentation spanning much of pediatric development. In addition, tic disorders are often associated with adverse developmental outcomes or comorbidities that can have a major impact on life adjustment even into adulthood. This proposal will generate information about continuities and discontinuities of clinical presentation, perception of self, access to care, and treatment strategies that will allow us to identify characteristics for those most at risk for persistent unmet treatment needs and for poor outcomes.
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