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Master of Public Health

Surrogate Perceptions of Disability after Hospitalization for Traumatic Brain Injury

AUTHORS

Maiga AW , Cook M , Nordness MF , Gao Y , Rakhit S , Rivera EL , Harrell FE , Sharp KW , Patel MB , . Journal of the American College of Surgeons. 2024 1 12; ().

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.

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).

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.

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