Would You Rather: Quantifying TBI Survivor Perceptions of Functional Status via Their Surrogates

Amelia W Maiga; Madison R Cook; Mina F Nordness; Yue Gao; Shayan Rakhit; Erika L Rivera; Frank E Harrell Jr; Mayur B Patel

doi:10.1097/SLA.0000000000006274

Would You Rather: Quantifying TBI Survivor Perceptions of Functional Status via Their Surrogates

Ann Surg. 2024 Mar 19. doi: 10.1097/SLA.0000000000006274. Online ahead of print.

Authors

Amelia W Maiga^{1

2}, Madison R Cook³, Mina F Nordness¹, Yue Gao⁴, Shayan Rakhit^{1

2}, Erika L Rivera^{1

2}, Frank E Harrell Jr⁴, Mayur B Patel^{1

2

5}

Affiliations

¹ Division of Acute Care Surgery, Department of Surgery, Section of Surgical Sciences, Vanderbilt University Medical Center, 1211 21st Avenue South, Suite 404, Nashville, TN 37212.
² Critical Illness, Brain dysfunction, and Survivorship Center, Vanderbilt Center for Health Services Research, Vanderbilt Institute for Medicine and Public Health, Vanderbilt University Medical Center, Suite 450, 4th Floor, 2525 West End Avenue Nashville, TN 37203.
³ Department of Surgery, Temple University Hospital, 3401 N. Broad Street, Parkinson Pavilion, Suite 400, Philadelphia, PA 19140.
⁴ Department of Biostatistics, Vanderbilt University Medical Center, Room 11133B, 2525 West End Avenue Nashville, TN 37203.
⁵ Vanderbilt University Medical Center; Geriatric Research Education and Clinical Center; Surgical Services, Tennessee Valley Healthcare System.

PMID: 38501233
DOI: 10.1097/SLA.0000000000006274

Abstract

Objective: To quantify health utilities of the Glasgow Outcome Scale-Extended (GOSE) states after actual Traumatic Brain Injury (TBI).

Background: Recovery after TBI is measured using the GOSE, a validated clinical trial endpoint. A recent public survey quantified the health utilities of some GOSE states after hypothetical TBI as worse than death. However, no health utilities exist for disability after actual TBI.

Methods: This national computer-adaptive survey followed EQUATOR-CHERRIES guidelines and recruited adult TBI survivors (injury>1 y prior) via their available surrogates. Using a standard gamble approach in randomized order, participants gave preferences for post-TBI categorical health states ranging from GOSE 2-8. We calculated median [interquartile range, IQR] health utilities for each GOSE state, from -1 (worse than death) to 1 (full health), with 0 as reference (death, GOSE 1).

Results: Of 515 eligible, 298 surrogates (58%) consented and completed the scenarios on TBI survivors' behalf. TBI survivors had a current median GOSE 5 [3-7]. GOSE 2, GOSE 3, and GOSE 4 were rated worse than death by 89%, 64%, and 38%, respectively. The relationship was nonlinear, and intervals were unequal between states, with a bimodal distribution for GOSE 4.

Conclusions: In this index study of actual post-TBI disability, poor neurologic outcomes represented by GOSE 2-4 were perceived as worse than death by at least one in three survivors. Similar to previously reported public perceptions after a hypothetical TBI, these long-term perceptions may inform earlier post-TBI shared decision making, as well as help shape value-based research and quality of care.

Level of evidence: II, Economic & Value-based Evaluations.