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

Yelena G Bodien^{1

2

3

4

5

6}, Lydia Borsi¹, Ellyn Pier¹, Samantha Kanny¹, Lillian Droscha¹, William J W Choi^{1

7}, Ryan Filoramo^{1

8}, Danielle Burnetta^{1

9}, Kathleen McColgan^{1

9}, Bhumi Patel^{1

9}, Mallory Spring^{1

9}, Jean Paul Vazquez Rivera^{1

9}, Jessica Wolfe¹, Enrico Quilico¹⁰, Tiffany Campbell¹¹, Amanda R Merner^{11

12}, Gabriel Lázaro-Muñoz^{11

12}, Lindsay Wilson¹³, Joseph T Giacino^{1

3}

Affiliations

¹ Department of Physical Medicine and Rehabilitation, Spaulding Rehabilitation Hospital, Charlestown, MA.
² Department of Neurology, Massachusetts General Hospital, Boston, MA.
³ Department of Physical Medicine and Rehabilitation, Harvard Medical School, Boston, MA.
⁴ Department of Surgery, Vanderbilt University Medical Center, Nashville, TN.
⁵ Department of Neurologic Surgery, Vanderbilt University Medical Center, Nashville, TN.
⁶ Department of Physical Medicine and Rehabilitation, Vanderbilt University Medical Center, Nashville, TN.
⁷ Warren Alpert Medical School of Brown University, Providence, RI.
⁸ Boston University, Boston, MA.
⁹ Institute of Health Professions, Massachusetts General Hospital, Charlestown, MA.
¹⁰ Baylor Scott and White Research Institute, Dallas, TX.
¹¹ Harvard Medical School Center for Bioethics, Boston, MA.
¹² Department of Neurosurgery, Massachusetts General Hospital, Boston, MA.
¹³ Division of Psychology, University of Stirling, Stirling, United Kingdom.

PMID: 41575290
DOI: 10.1097/CCM.0000000000007017

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

Yelena G Bodien et al. Crit Care Med. 2026.

. 2026 Jan 23.

doi: 10.1097/CCM.0000000000007017. Online ahead of print.

Authors

Affiliations

¹ Department of Physical Medicine and Rehabilitation, Spaulding Rehabilitation Hospital, Charlestown, MA.
² Department of Neurology, Massachusetts General Hospital, Boston, MA.
³ Department of Physical Medicine and Rehabilitation, Harvard Medical School, Boston, MA.
⁴ Department of Surgery, Vanderbilt University Medical Center, Nashville, TN.
⁵ Department of Neurologic Surgery, Vanderbilt University Medical Center, Nashville, TN.
⁶ Department of Physical Medicine and Rehabilitation, Vanderbilt University Medical Center, Nashville, TN.
⁷ Warren Alpert Medical School of Brown University, Providence, RI.
⁸ Boston University, Boston, MA.
⁹ Institute of Health Professions, Massachusetts General Hospital, Charlestown, MA.
¹⁰ Baylor Scott and White Research Institute, Dallas, TX.
¹¹ Harvard Medical School Center for Bioethics, Boston, MA.
¹² Department of Neurosurgery, Massachusetts General Hospital, Boston, MA.
¹³ Division of Psychology, University of Stirling, Stirling, United Kingdom.

PMID: 41575290
DOI: 10.1097/CCM.0000000000007017

Abstract

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.

Keywords: Glasgow Outcome Scale-Extended; brain injuries; caregivers; medical decision-making; outcome assessment.

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Conflict of interest statement

Dr. Bodien’s, Ms. Borsi’s, Ms. Pier’s, Ms. Droscha’s, Dr. Kanny’s, and Dr. Giacino's institutions received funding from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDLIRR) (90DPTB0027); Drs. Spring’s, Rivera’s, Campbell’s, and Merner’s institutions received support for article research from the National Institutes of Health. Dr. Lázaro-Muñoz’s institution received funding from Spaulding Rehabilitation Hospital. Dr. Wilson received funding from the Traumatic Brain Injury Model Systems, Mass General Brigham, Medical Research Council, UK, the National Institute for Health and Care Research, and Medical College of Wisconsin. Dr. Giacino’s institution received funding from the University of California at San Francisco, and the Barbara Epstein Foundation. The remaining authors have disclosed that they do not have any potential conflicts of interest.

References

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1. McCrea MA, Giacino JT, Barber J, et al.; TRACK-TBI Investigators: Functional outcomes over the first year after moderate to severe traumatic brain injury in the prospective, longitudinal TRACK-TBI study. JAMA Neurol 2021; 78:982–992
1. Maas AIR, Menon DK, Manley GT, et al.: Traumatic brain injury: Progress and challenges in prevention, clinical care, and research. Lancet Neurol 2022; 21:1004–1060
1. Walker WC, Stromberg KA, Marwitz JH, et al.: Predicting long-term global outcome after traumatic brain injury: Development of a practical prognostic tool using the Traumatic Brain Injury Model Systems national database. J Neurotrauma 2018; 35:1587–1595
1. Helmrich IRAR, Klaveren D, Andelic N, et al.: Discrepancy between disability and reported well-being after traumatic brain injury. J Neurol Neurosurg Psychiatry. 2022; 93:785–796

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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

References

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