@article{ref1,
title="Surrogate perceptions of disability after hospitalization for traumatic brain injury",
journal="Journal of the American Academy of Surgeons",
year="2024",
author="Maiga, Amelia W. and Cook, Madison and Nordness, Mina F. and Gao, Yue and Rakhit, Shayan and Rivera, Erika L. and Harrell, Frank E. and Sharp, Kenneth W. and Patel, Mayur B.",
volume="ePub",
number="ePub",
pages="ePub-ePub",
abstract="BACKGROUND: The Glasgow Outcome Scale Extended (GOSE) is a measure of recovery after traumatic brain injury (TBI). Public surveys rate some GOSE states worse than death. Direct family experience caring for TBI patients may impact views of post-TBI disability. STUDY DESIGN: We conducted a national cross-sectional computer-adaptive survey of surrogates of TBI dependents incurring injury >1y prior. Using a standard gamble approach in randomized order, surrogates evaluated preferences for post-TBI GOSE states from GOSE2 (bedridden, unaware) to GOSE8 (good recovery). We calculated median [IQR] health utilities for each post-TBI state, ranging from -1 to 1, with 0 as reference (death=GOSE1), and assessed sociodemographic associations using proportional odds logistic regression modeling. <br><br>RESULTS: Of 515 eligible surrogates, 298 (58%) completed scenarios. Surrogates were median aged 46 [IQR 35,60], 54% married, with Santa Clara strength of faith 14 [10,18]. TBI dependents had a median GOSE5 [3,7]. Median [IQR] health utility ratings for GOSE2, GOSE3, and GOSE4 were -0.06 [-0.50,-0.01], -0.01 [-0.30,0.45], and 0.30 [-0.01,0.80], rated worse than death by 91%, 65%, and 40%, respectively. Surrogates rated GOSE4 (daily partial help) worse than the general population. Married surrogates rated GOSE4 higher (p<0.01). Higher strength of faith was associated with higher utility scores across GOSE states (p=0.034). <br><br>CONCLUSIONS: In this index study of surrogate perceptions about disability after TBI, poor neurologic outcomes - vegetative, needing all-day or partial daily assistance - were perceived as worse than death by at least one in three surrogates. Surrogate perceptions differed from the unexposed public. Long-term perceptions about post-TBI disability may inform earlier, tailored shared decision-making after neurotrauma.<p /> <p>Language: en</p>",
language="en",
issn="1072-7515",
doi="10.1097/XCS.0000000000000960",
url="http://dx.doi.org/10.1097/XCS.0000000000000960"
}