A Survey to Determine Health Utility States After a Traumatic Brain Injury (TBI): Influence of a History of TBI on Disability Perceptions.

Background The Glasgow Outcome Scale-Extended (GOSE) has emerged as one of the most widely used outcome instruments for evaluating ongoing disability and recovery after traumatic brain injury (TBI). The influence of a personal history of TBI on disability perception and quality of life is not well understood. This study aimed to assess changes in health utility states using the GOSE among individuals with severe TBI and their caregivers compared to a general population group. We hypothesized that individuals with a history of TBI, either as patients or caregivers, would recognize health utility associated with a more severe disability than the general population group. Methodology This cross-sectional, observational study included 300 individuals with a history of severe TBI, 300 designated primary caregivers or family members, with 1:1 participation for each subject with severe TBI, and 300 participants from the general population. A computer-based survey was developed based on the GOSE. Participants assessed hypothetical scenarios representing one-year post-TBI outcomes using a standard gamble approach. The main measure for this study was participants' perceptions of health-related quality of life and preferences for different GOSE health states following TBI. Results Of the 900 initial participants, 10 were excluded. Among the remaining 890 participants, lower GOSE states were rated to have lower health utilities. The general population group exhibited a notable decrease in health utility ratings from GOSE4 to GOSE3. Individuals with a history of severe TBI and their caregivers or family members experienced the most substantial decline in health utility ratings between GOSE3 and GOSE2. TBI and caregiver/family member status correlated with higher health utility ratings. Conclusions This study validated the use of the GOSE as a health utility metric and emphasized the subjective nature of acceptable outcomes. These findings underscore the need for considering personal experiences and preferences in decision-making regarding TBI care.