Oral Papers: Neuropsychiatry
Background / Significance: Health utilities represent the strength of one’s preferences under conditions of uncertainty. There are insufficient data to indicate how an individual would value levels of disability after a Traumatic Brain Injury (TBI). Our primary objective was to determine the health utility states of the most commonly used traumatic brain injury (TBI) clinical trial endpoint, the Extended Glasgow Outcome Scale (GOSE).
Methods: Cross-sectional web-based online convenience sampling adaptive survey. Using the standard gamble approach, participants evaluated their preferences for GOSE health states one-year after a hypothetical TBI. The categorical GOSE was studied from vegetative state (GOSE2) to upper good recovery (GOSE8). Median (25th percentile, 75th percentile) health utility values for different GOSE states, ranging from -1 (worse than death) to 1 (full health), with 0 as reference (death).
Results: Of 3,508 eligible participants, 3,235 (92.22%) completed the survey. Participants rated lower GOSE states as having lower utility, with some rated worse than death, though the relationship was non-linear and intervals were unequal between health states. Being divorced compared to a respondent who had never married resulted in a lower odds of a better health utility rating (OR=0.76, 95% CI: 0.61 – 0.96, p< 0.0037). Over 75% of participants rated a vegetative state (GOSE2, absence of awareness and bedridden) and about 50% rated lower severe disability (GOSE3, housebound needing all-day assistance) as conditions worse than death. Discussion: This is the largest investigation of societal preferences of disability after brain injury using the prominent GOSE instrument demonstrating unequally rated health states, with some perceived as worse than death. Our data show the greatest change in mean health utility score occurred from Upper Severe Disability (GOSE4) to Lower Severe Disability (GOSE3) states. This transition in functional status is marked by a heavy reliance on social and economic support from family members and/or friends, which may have heavily impacted participants’ value judgments. TBI researchers may want to incorporate GOSE health valuations in future clinical trials endpoints, since these data show a floor effect among the lowest GOSE outcomes (i.e., GOSE2 and GOSE3 equal to or worse than death), and no discrimination between Upper Severe Disability (GOSE4) and Lower Moderate Disability (GOSE5) states. Lower functional health states involve heavy reliance on family members, spouses particularly, which may explain differences in health assessments from individuals who are no longer married (i.e. divorcees) and can no longer rely on spousal support, as compared to unmarried individuals who have not experienced this benefit.
Conclusions: In the largest investigation of public perceptions about post-TBI disability, we demonstrate unequally rated health states, with some perceived as worse than death. These results may guide future comparative-effectiveness research and shared medical decision making after neurologic injury.