• Christopher Malone, Kimberly S Erler, Joseph T Giacino, Flora M Hammond, Shannon B Juengst, Joseph J Locascio, Risa Nakase-Richardson, Monica Verduzco-Gutierrez, John Whyte, Nathan Zasler, and Yelena G Bodien.
• Department of Physical Medicine and Rehabilitation, Harvard Medical School, Boston, MA, United States.
• Front Neurol. 2019 Jan 1; 10: 1314.

AbstractSevere traumatic brain injury (TBI) may result in a disorder of consciousness (DoC) and lead to substantial long-term disability. While level of independence with activities of daily living, especially for persons who recover consciousness during inpatient rehabilitation, generally improves over time, the degree of change in participation remains unknown. We determined level of participation among persons with TBI between 2005 and 2017 who were admitted to inpatient rehabilitation unable to follow commands and subsequently enrolled in the TBI Model Systems National Database. Participation on the Participation Assessment with Recombined Tools-Objective (PART-O) Productivity, Social Relations, and Out and About subscales was evaluated at 1-5 years post-injury. We used a mixed-effects model to longitudinally compare participation between persons who did and did not regain command-following during inpatient rehabilitation. We further explored the level of participation associated with increasing levels of functional independence (FIM). The analysis included 333 persons (229 recovered command-following during rehabilitation, mean age = 35.46 years, 74.9% male). Participation across groups, at all follow-up time points, on all PART-O subscales, was remarkably low (mean range = 0.021-1.91, maximum possible score = 5). Performance was highest on the Social Relations subscale and lowest on the Productivity subscale. Longitudinal analyses revealed no difference in level of participation or change in participation across time for persons who regained command-following during rehabilitation compared to those who did not. While productivity increased over time, social participation did not and participation outside the home increased more for younger than for older persons. Across all three PART-O subscales, FIM Motor scores positively predicted participation. FIM Cognitive scores positively predicted level of participation on the Productivity and Social Relations subscales. Exploratory analyses revealed that even persons who achieved independence on the FIM Motor and Cognitive subscales had low levels of participation across domains and follow-up years. In summary, persons with severe TBI who were admitted to inpatient rehabilitation unable to follow commands were found to be unlikely to participate in productive tasks, social endeavors, or activities outside of the home up to 5 years post-injury, even if functional independence was recovered.Copyright © 2019 Malone, Erler, Giacino, Hammond, Juengst, Locascio, Nakase-Richardson, Verduzco-Gutierrez, Whyte, Zasler and Bodien.

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