Quality of life, Comorbidities, and Health Service Utilization in Youth with Tic

University Of South Florida, Tampa FL

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Abstract

Among neuropsychiatric disorders, tic disorders including Tourette syndrome, affects a large number of children: approximately 1% of those in the general population and up to 20% of students in Exceptional Student Educational classrooms. Of those with a chronic course, the illness spans most of their pediatric development as many cases develop in preschool and persist through late adolescence. Tic disorders are often associated with adverse developmental outcomes or comorbidities that can have a major impact on life adjustment even into adulthood. Although evidence-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 fully realized. Moreover, due to developmental shifts in decision making power and in relationships with parents and peers, utilization of health care services likely will change as children mature;yet, the factors that influence this change are not well understood. We also know that some individuals with severe TS show remarkable resiliency and adapt well against the apparent odds but we know little about 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 by careful exploration of these individual and community based dynamics, best achieved in a parallel quantitative-qualitative research design. To better understand resources, services and medical risks across youth development, we propose to examine existing insurance database of youth identified with tics in comparison to those with ADHD and to those without neuropsychiatric disorders (N=300 per group). Concurrently, we plan to intimately examine the lived experiences and perspectives of youth in their day to day challenges of adjusting to a visibly apparent neuropsychiatric illness by qualitative process via experience sampling (N=100) and focus group (N=40) with youth and their contacts at the center and in the field. By combining both quantitative and qualitative data, we will better understand components of youth presentation that lead to poor as well as good illness adaptation by converging the characteristics of services received via database analysis with the qualitative experiences of youth via experience sampling (qualitative interviews of selected school district teachers/ personnel and medical treatment providers) and focus groups. From this collected information, a survey will be developed to test and expand on the needs and perspectives of an additional 150 youth identified as having tics. This proposal will generate information about continuities and discontinuities of clinical presentation, perception of self, access to care, and treatment strategies spanning four developmental phases (early and middle childhood, and early and late adolescence) that will allow us to identify characteristics of each phase for those most at risk for persistent unmet treatment needs and for poor outcomes.