Perspectives of persons with lived experience on acceptable outcome after traumatic brain injury
Bodien, Y.; Borsi, L.; Pier, E.; Kanny, S.; Droscha, L.; Choi, W.; Filoramo, R.; Burnetta, D.; McColgan, K.; Patel, B.; Spring, M.; Vazquez Rivera, J. P.; Wolfe, J.; Quilico, E.; Campbell, T.; Merner, A.; Lazaro-Munoz, G.; Wilson, L.; Giacino, J.
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ImportanceCurrent approaches to functional outcome assessment in persons with severe traumatic brain injury (TBI) may not reflect the perspectives of persons with TBI or TBI caregivers. ObjectiveDetermine the lowest level of functional recovery after severe TBI that is perceived to be acceptable by persons with TBI and TBI caregivers. DesignCross-sectional crowdsourcing online survey disseminated May-July 2024. SettingUnited States. ParticipantsPersons with a history of TBI requiring assistance with basic daily activities and TBI caregivers. Exposure(s)History of severe TBI. Outcome(s)/Measure(s)An expanded version of the Glasgow Outcome Scale-Extended (GOSE) designed to determine the level of acceptability of 11 TBI outcome milestones and the minimally acceptable outcome (MAO). ResultsThe survey was completed by 252 persons with TBI (mean[SD] age 39.8[13.5] years; 67% female; 75% white; 11.9[12.0] years post-TBI) and 256 TBI caregivers (41.0[12.1] years; 57% female; 65% white). Among the outcomes selected most frequently as the MAO by persons with TBI (i.e., "recovery of yes/no communication" and "conscious, but does not communicate") and TBI caregivers (i.e., "recovery of yes/no communication" and "alive, but permanently unconscious"), recovery of reliable yes/no communication was selected as acceptable by most 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 reliable yes/no 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. Outcomes representing disability greater than "completely independent in the home" were selected as the MAO more frequently than this common cut-off for "favorable" outcome, which was selected as the MAO by 5.6% and 3.9% persons with TBI and caregivers, respectively. Conclusions/RelevancePersons with TBI and TBI caregivers identified recovery of yes/no communication, an outcome that is well below the traditional cut-off for "favorable," 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.