|  Programs
Adults
and Elders
Autism
Center
Center
on Infant
Mental Health
and Development
Center for
Technology and
Disability Studies
Clinical Training
Unit
Community
Disability Policy
Initiative
Experimental
Education Unit
Genetics
Program |
Descriptive Study of Tourette Syndrome: Quality
of Life
Core Function: Research and Evaluation
The long-range goal of this project is to develop an outcomes assessment strategy specific to youth age 11- 18 that have Tourette syndrome (TS) or Tourette syndrome plus a comorbid condition (TS+). This strategy should be responsive to formal and informal interventions and to the individual, social, and environmental correlates of TS. The initial phase of this strategy is to elucidate factors that influence the quality of life among youth with TS or TS+ and their family members and to develop self-reported outcomes about the quality of life (QoL) among youth with TS.
Despite a growing body of research investigating medical and social aspects of TS, few studies address the association between clinical features of TS and their impact on the child and family. In addition, it is not known if quality of life (QoL) experiences in adolescents with TS are distinct from those of youth with other chronic conditions and from those of youth with no other diagnosed chronic conditions. Children with TS face a unique set of potential QoL complications for which specific tools of investigation are largely unavailable.
Issues related to QoL and family function are pivotal to well-being and aptitude in scholastic, social and vocational pursuits among all youth. Tics, the essential element of TS, vary in features of severity, frequency and interference, and their imposition may range from inconsequential to severely disabling. Further, people with TS are highly susceptible to comorbid conditions that are frequently overlooked and each, independently and in combination, places youth and families at significant risk for QoL impairment. These comorbid conditions may include attention-deficit hyperactivity disorder, obsessive-compulsive disorders (OCD) or behaviors (OCB), learning disabilities, depression and/or dysthymia, general anxiety, as well as other conditions.
This research will combine qualitative and quantitative research on youth with TS alone or TS with comorbid conditions. The qualitative research includes one-on-one interviews and focus groups. Thirty adolescents, age 11-18, with TS will be interviewed one-on-one regarding QoL. These interviews will be semi-structured and will explore the following areas among others that emerge during the interview process: Meaning of QoL, family, school, recreation, friends, self esteem, energy, material comfort, environment, spirituality, drugs/alcohol, girlfriend/boyfriend, impact of TS, and comparison with others. Four focus groups of approximately six participants each will be conducted youth 16-22 with TS and parents of TS adolescents (can be parents of currently participating TS adolescents, or parents of TS adolescents who are not in the study). The focus groups will be moderated by one or two members of the research team and will explore QoL issues for TS adolescents.
For the quantitative portion of the study, 60 youth age 11-18 with TS-only, 60 youth age 11-18 with TS+ comorbid conditions, and their families will be recruited to complete questionnaires regarding the impact of TS on QoL, family functioning, and the sequelae of living with TS. This portion will also include a medical history screening/interview using high quality instruments such as the Children’s Depression Inventory, Children’s Yale-Brown Obsessive Compulsive Scale-Revised, the Family Impact Questionnaire-R, and the Yale Global Tic Severity Scale.
More Information
Seattle
Quality of Life Group
Developmental
Behavioral Pediatrics
|
