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  5. Descriptive Study of Tourette Syndrome-Quality of Life

Descriptive Study of Tourette Syndrome-Quality of Life

January 31, 2004

Principle Investigator: Samuel Zinner, MD
Institution: University of Washington
Approximate Year 1 Funding: $193,991.27
RTOI #: 2004-04-01

Abstract
The goals of this research project are:

  • To identify factors that contribute to the quality of life (QoL) of persons with Tourette syndrome (TS) with and without co-morbid conditions (CC) by identifying factors that contribute to the efficacy of identification and management of TS
  • To determine the need to develop a TS-specific QoL screening instrument, and to provide information on possible points of intervention

QoL is an important and primary justification for the management of TS, but there are very few controlled studies to assist in determining those factors that affect QoL in patients with TS. To address these aims, this project will build upon previous studies employing the Youth QoL Scale (a generic assessment tool developed by participants in this project and colleagues) to assess four QoL domains (i.e., sense of self, social relationships, culture and community, and general quality of life).

In order to determine if QoL experiences in adolescents with TS are distinct from those of youth with other chronic conditions and from those of youth without other diagnosed chronic conditions, this study will compare scores on the YQoL among youth 11-18 years with TS as well as TS plus CC to scores that are currently available for adolescents with and without other chronic conditions. In addition, investigators will conduct qualitative interviews with youth (11-18) with TS, as well as focus groups with primary caregivers of the youth and with young adults (18-22) with TS. These data will be used in the development of QoL module specific to this adolescent population, the YQoL - Tourette Syndrome model (YQoL - TS). Emphasis will be placed on families as children live within the context of the families, and family members influence one another throughout development and the life course.

The Family Impact Questionnaire (FIQ) will be used to uncover the impact of family functioning on social and emotional adjustment of youth with TS and youth with TS plus CC. Aspects to be considered will include spousal/partner relationships, sibling influences, and perceptions (those of patients with TS and those of family members) of family adaptability. Several co-morbid conditions will be qualified directly by use of standardized screening tools (to include: Connors' Rating Scales, Yale Global Tic Severity Scale, Children's Yale-Brown Obsessive-Compulsive Scale, Kaufman Brief intelligence Test-2, and Kaufman Test of Educational Achievement-2).

Co-morbid afflictions for which standardized screening tools are not available (e.g., social skills, rage attacks, sleeping problems) will be explored via checklists, with further exploration determined case-by-case using a semi-structured interview template.

Objectives also include use of physician-based history and physical examination template to elucidate factors in adaptation and management, including latency to diagnosis, identification of co-morbid conditions, family support, school supports, peer support, self-esteem and sociodemographic components.