Jo Ellen Wilson1,2, Myrick C Shinall1,3, Taylor C Leath4, Li Wang5, Frank E Harrell5, Laura D Wilson6,7, Mina F Nordness4, Shayan Rakhit4, Michael R de Riesthal7, Melissa C Duff7, Pratik P Pandharipande1,8,9,10, Mayur B Patel1,4,7,9,10. 1. Critical Illness, Brain Dysfunction, and Survivorship (CIBS) Center, Vanderbilt University Medical Center, Nashville, TN. 2. Division of General Psychiatry, Department of Psychiatry and Behavioral Sciences, Vanderbilt University Medical Center, Nashville, TN. 3. Division of General Surgery, Department of Surgery, Section of Surgical Sciences, Vanderbilt University Medical Center, Nashville, TN. 4. Division of Trauma, Emergency General Surgery, and Surgical Critical Care, Departments of Surgery and Neurosurgery, Section of Surgical Sciences; Vanderbilt Brain Institute, Vanderbilt University Medical Center, Nashville, TN. 5. Department of Biostatistics, Vanderbilt University Medical Center, Nashville, TN. 6. Department of Communication Sciences and Disorders, Oxley College of Health Sciences, The University of Tulsa, Tulsa, OK. 7. Department of Hearing and Speech Sciences, Vanderbilt University Medical Center, Nashville, TN. 8. Division of Anesthesiology Critical Care Medicine, Department of Anesthesiology, Vanderbilt University Medical Center, Nashville, TN. 9. Center for Health Services Research, Vanderbilt University Medical Center, Nashville, TN. 10. Nashville Veterans Affairs (VA) Medical Center, Geriatric Research Education and Clinical Centers; Tennessee Valley Healthcare System, United States Department of Veterans Affairs, Nashville, TN.
Abstract
OBJECTIVE: The aim of this study 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). SUMMARY BACKGROUND DATA: 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 TBI. METHODS: This was a cross-sectional web-based online convenience sampling adaptive survey. Using a standard gamble approach, participants evaluated their preferences for GOSE health states 1 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 after TBI, ranging from -1 (worse than death) to 1 (full health), with 0 as reference (death). RESULTS: Of 3508 eligible participants, 3235 (92.22%) completed the survey. Participants rated lower GOSE states as having lower utility, with some states rated as worse than death, though the relationship was nonlinear and intervals were unequal between health states. 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. CONCLUSIONS: In the largest investigation of public perceptions about post-TBI disability, we demonstrate unequally rated health states, with some states perceived as worse than death. Although limited by selection bias, these results may guide future comparative-effectiveness research and shared medical decision-making after neurologic injury.
OBJECTIVE: The aim of this study 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). SUMMARY BACKGROUND DATA: 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 TBI. METHODS: This was a cross-sectional web-based online convenience sampling adaptive survey. Using a standard gamble approach, participants evaluated their preferences for GOSE health states 1 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 after TBI, ranging from -1 (worse than death) to 1 (full health), with 0 as reference (death). RESULTS: Of 3508 eligible participants, 3235 (92.22%) completed the survey. Participants rated lower GOSE states as having lower utility, with some states rated as worse than death, though the relationship was nonlinear and intervals were unequal between health states. 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. CONCLUSIONS: In the largest investigation of public perceptions about post-TBI disability, we demonstrate unequally rated health states, with some states perceived as worse than death. Although limited by selection bias, these results may guide future comparative-effectiveness research and shared medical decision-making after neurologic injury.
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