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Worse Than Death: Survey of Public Perceptions of Disability Outcomes After Hypothetical Traumatic Brain Injury.
Ann Surg. 2020 Jan 14 [Online ahead of print]AnnS

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.

Authors+Show Affiliations

Critical Illness, Brain Dysfunction, and Survivorship (CIBS) Center, Vanderbilt University Medical Center, Nashville, TN. Division of General Psychiatry, Department of Psychiatry and Behavioral Sciences, Vanderbilt University Medical Center, Nashville, TN.Critical Illness, Brain Dysfunction, and Survivorship (CIBS) Center, Vanderbilt University Medical Center, Nashville, TN. Division of General Surgery, Department of Surgery, Section of Surgical Sciences, Vanderbilt University Medical Center, Nashville, TN.Division of Trauma, Emergency General Surgery, and Surgical Critical Care, Departments of Surgery and Neurosurgery, Section of Surgical Sciences.Department of Biostatistics, Vanderbilt University Medical Center, Nashville, TN.Department of Biostatistics, Vanderbilt University Medical Center, Nashville, TN.Department of Communication Sciences and Disorders, Oxley College of Health Sciences, The University of Tulsa, Tulsa, OK. Department of Hearing and Speech Sciences, Vanderbilt University Medical Center, Nashville, TN.Division of Trauma, Emergency General Surgery, and Surgical Critical Care, Departments of Surgery and Neurosurgery, Section of Surgical Sciences.Division of Trauma, Emergency General Surgery, and Surgical Critical Care, Departments of Surgery and Neurosurgery, Section of Surgical Sciences.Department of Hearing and Speech Sciences, Vanderbilt University Medical Center, Nashville, TN.Department of Hearing and Speech Sciences, Vanderbilt University Medical Center, Nashville, TN.Critical Illness, Brain Dysfunction, and Survivorship (CIBS) Center, Vanderbilt University Medical Center, Nashville, TN. Division of Anesthesiology Critical Care Medicine, Department of Anesthesiology, Vanderbilt University Medical Center, Nashville, TN. Center for Health Services Research, Vanderbilt University Medical Center, Nashville, TN. Nashville Veterans Affairs (VA) Medical Center, Geriatric Research Education and Clinical Centers.Critical Illness, Brain Dysfunction, and Survivorship (CIBS) Center, Vanderbilt University Medical Center, Nashville, TN. Division of Trauma, Emergency General Surgery, and Surgical Critical Care, Departments of Surgery and Neurosurgery, Section of Surgical Sciences. Department of Hearing and Speech Sciences, Vanderbilt University Medical Center, Nashville, TN. Center for Health Services Research, Vanderbilt University Medical Center, Nashville, TN. Nashville Veterans Affairs (VA) Medical Center, Geriatric Research Education and Clinical Centers.

Pub Type(s)

Journal Article

Language

eng

PubMed ID

31972638

Citation

Wilson, Jo Ellen, et al. "Worse Than Death: Survey of Public Perceptions of Disability Outcomes After Hypothetical Traumatic Brain Injury." Annals of Surgery, 2020.
Wilson JE, Shinall MC, Leath TC, et al. Worse Than Death: Survey of Public Perceptions of Disability Outcomes After Hypothetical Traumatic Brain Injury. Ann Surg. 2020.
Wilson, J. E., Shinall, M. C., Leath, T. C., Wang, L., Harrell, F. E., Wilson, L. D., Nordness, M. F., Rakhit, S., de Riesthal, M. R., Duff, M. C., Pandharipande, P. P., & Patel, M. B. (2020). Worse Than Death: Survey of Public Perceptions of Disability Outcomes After Hypothetical Traumatic Brain Injury. Annals of Surgery. https://doi.org/10.1097/SLA.0000000000003389
Wilson JE, et al. Worse Than Death: Survey of Public Perceptions of Disability Outcomes After Hypothetical Traumatic Brain Injury. Ann Surg. 2020 Jan 14; PubMed PMID: 31972638.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Worse Than Death: Survey of Public Perceptions of Disability Outcomes After Hypothetical Traumatic Brain Injury. AU - Wilson,Jo Ellen, AU - Shinall,Myrick C,Jr AU - Leath,Taylor C, AU - Wang,Li, AU - Harrell,Frank E,Jr AU - Wilson,Laura D, AU - Nordness,Mina F, AU - Rakhit,Shayan, AU - de Riesthal,Michael R, AU - Duff,Melissa C, AU - Pandharipande,Pratik P, AU - Patel,Mayur B, Y1 - 2020/01/14/ PY - 2020/1/24/entrez PY - 2020/1/24/pubmed PY - 2020/1/24/medline JF - Annals of surgery JO - Ann. Surg. N2 - 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. SN - 1528-1140 UR - https://www.unboundmedicine.com/medline/citation/31972638/Worse_Than_Death:_Survey_of_Public_Perceptions_of_Disability_Outcomes_After_Hypothetical_Traumatic_Brain_Injury L2 - http://Insights.ovid.com/pubmed?pmid=31972638 DB - PRIME DP - Unbound Medicine ER -
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