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.