Perspectives of Persons With Lived Experience on Acceptable Outcome After Severe Acute Traumatic Brain Injury

OBJECTIVE: Determine the lowest level of functional recovery after severe traumatic brain injury (TBI) that is perceived to be acceptable by persons with TBI and TBI caregivers. DESIGN: Cross-sectional crowdsourcing online survey disseminated May-July 2024. SETTING: United States. SUBJECTS: Persons with a history of TBI requiring assistance with basic daily activities and TBI caregivers. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULT: We developed an expanded version of the Glasgow Outcome Scale-Extended to determine the acceptability of 11 TBI outcome milestones and identify the minimally acceptable outcome (MAO). The survey was completed by 252 persons with TBI (mean [ sd ] 39.8 [13.5] yr old; 67% female; 75% White; 11.9 [12.0] yr post-TBI) and 256 TBI caregivers (41.0 [12.1] yr old; 57% female; 65% White). Among the outcomes selected most frequently as the MAO by persons with TBI ("recovery of basic yes/no communication" and "conscious, but does not communicate") and TBI caregivers ("recovery of basic yes/no communication" and "alive, but permanently unconscious"), recovery of yes/no communication was rated as acceptable by more respondents (persons with TBI: 36% vs. 12%; Z = -7.1, p < 0.0001; TBI caregivers: 40% vs. 14%; Z = -7.1, p < 0.0001). Recovery of communication was therefore identified as the MAO by both cohorts. This outcome was rated as acceptable or somewhat acceptable by 65% of persons with TBI and 72% of caregivers. All outcomes ranging from "alive, but permanently unconscious" to "partially independent in the home" were selected as the MAO significantly more frequently than "completely independent in the home," a common "favorable" recovery cutoff. CONCLUSIONS: Persons with TBI and TBI caregivers identified recovery of communication as the MAO. Persons with lived experience appear more accepting of a greater burden of disability than TBI investigators and providers. Recognizing this disparity in perspectives may influence clinical decision-making regarding goals of care and suggests the need for a more person-centered approach to TBI outcome assessment.