(Press-News.org) A federally funded study of more than 500 people living with traumatic brain injury (TBI) and their caregivers, co-led by researchers at Mass General Brigham, found that survey participants viewed the ability to regain basic communication as the minimum acceptable outcome after severe brain injury. The study, published in Critical Care Medicine, shows that many individuals living with TBIs consider outcomes involving significant disability to be acceptable. These results challenge longstanding assumptions by TBI researchers and providers about what constitutes a “favorable” outcome after a severe brain injury, and should inform future care discussions and clinical trials, according to the authors.
“Medical decisions such as withdrawal of life support often rely on research-guided predictions of whether a patient will achieve a ‘favorable’ outcome after TBI,” said senior study author Joseph Giacino, PhD, director of the Spaulding-Harvard Traumatic Brain Injury Model System at Mass General Brigham. “Our findings show that recovery of basic yes/no communication can hold profound value for people living with TBIs and their caregivers.”
The study highlights a gap between assumptions held by TBI clinicians and researchers and what patients and families actually find meaningful.Among measures used most frequently to assess TBI outcome, none evaluate recovery of basic communication.
The study surveyed 252 individuals with TBI and 256 caregivers. They rated 11 TBI outcomes on a five-point scale ranging from “unacceptable to acceptable,” and then selected one minimally acceptable outcome. Respondents also rated the importance of 29 personal values that might influence decision-making after severe TBI.
The survey revealed 65% of individuals with TBI and 72% of caregivers rated recovery of basic communication as being “acceptable” or “somewhat acceptable”. Outcomes ranging from “alive, but permanently unconscious” to partially independent in the home” were selected significantly more frequently as the minimally acceptable outcome than “completely independent in the home,” which is a common cut-off for a “favorable” outcome in TBI research studies.
Study limitations include the inability to confirm TBI injury severity and level of disability of the respondents due to the survey methodology. In addition, the study did not include individuals who could not respond to surveys.
The authors call for more person-centered approaches to TBI outcome research and say these findings should be considered in the design of future TBI clinical trials.
“Our field has historically relied on outcome measures that don’t capture the full spectrum of TBI recovery or the milestones that matter most to patients and families,” said first study author Yelena Bodien, PhD, a clinical neuroscientist at Vanderbilt University Medical Center, formerly of Spaulding Rehabilitation. “These findings should guide the development of new outcome measures that better reflect the priorities of individuals with lived experience.”
Authorship: In addition to Bodien and Giacino, study co-authors include Lydia Borsi, Ellyn Pier, Samantha Kanny, Lillian Droscha, William Choi, Ryan Filoramo, Danielle Burnetta, Kathleen McColgan, Bhumi Patel, Mallory Spring, Jean Paul Vazquez Rivera, Jessica Wolfe, Enrico Quilico, Tiffany Campbell, Amanda R. Merner, Gabriel Lázaro-Muñoz, and Lindsay Wilson.
Disclosures: The authors declare no competing interests.
Funding: This research was funded by a National Institute on Disability, Independent Living, and Rehabilitation Research grant (90DPTB0027) to Spaulding-Harvard TBI Model System.
Paper cited: Bodien Y, et al. “Perspectives of persons with lived experience on acceptable outcome after severe acute traumatic brain injury.” Critical Care Medicine, DOI:10.1097/CCM.0000000000007017
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About Mass General Brigham
Mass General Brigham is an integrated academic health care system, uniting great minds to solve the hardest problems in medicine for our communities and the world. Mass General Brigham connects a full continuum of care across a system of academic medical centers, community and specialty hospitals, a health insurance plan, physician networks, community health centers, home care, and long-term care services. Mass General Brigham is a nonprofit organization committed to patient care, research, teaching, and service to the community. In addition, Mass General Brigham is one of the nation’s leading biomedical research organizations with several Harvard Medical School teaching hospitals. For more information, please visit massgeneralbrigham.org.
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