Measuring Quality of Life in Traumatic Brain Injury: the Next Generation of Instruments (TBI-QOL)

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Principal Investigator Name
David Tulsky, Ph.D.
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Objective: The scarcity of traumatic brain injury (TBI) -specific quality of life (QOL) measurement tools hinders the efforts of TBI intervention researchers, whose goal is to obtain valid and useful data to evaluate new treatment approaches. The goals of this study are to use the Kessler Foundation's expertise in the field of TBI research and access to large numbers of individuals with TBI in collaboration with the Neuro-QOL project to: (1) Develop an instrument for comprehensively assessing the health-related quality of life (HRQOL) of persons with TBI, regardless of the severity of their condition. (2) Enable comparisons of HRQOL in TBI with HRQOL in other neurologic conditions by integrating our instrument with the Neuro-QOL project. (3) Examine the relationships between objective deficits in cognition and self-reported subjective complaints of cognitive dysfunction. Design: Outcome Measures Development Setting: Data collection will occur at KIR, a freestanding rehabilitation hospital and outpatient settings with access to over 700 TBI patients treated each year. Data analyses and management will occur at Northwestern University, a research institutions that have expertise in the development of HRQOL scales and other assessment measures. Data collection will occur at 4 different TBI model system programs, each of which is a seasoned data collection infrastructure which has extensive contacts with consumers and service providers in the TBI community. Focus groups will be conducted with TBI consumers, caregivers and professionals to identify relevant issues for individuals with TBI and potential items will be created on the basis of these focus groups. Participants will complete questionnaires either at the hospital (while waiting for doctor appointments) or at home. Some participants will complete questionnaires via telephone from their residences. A smaller subset of these participants will complete a standard neuropsychological assessment at the Kessler Foundation. Focus groups of consumers and family members will be held at the Kessler Foundation. Field Testing Participants: Persons with a documented TBI who were 16 years of age or older at the time of injury and who at the time of data collection are at least 18 years of age and can read and speak English fluently. Individuals with TBIs will be selected according to the sample stratification matrix, which is subdivided according to severity of injury and time post injury ( < 18 months post injury, 18 months - 3 years post injury, or > 3 years post injury). Main Outcome Measures: TBI-specific Health-Related Quality of Life Scale; Neuro-QOL global Health Related Quality of Life Scale.