Long-term outcomes of prolonged disorders of consciousness: a prospective cohort study in specialized neurorehabilitation

BACKGROUND: There is limited information on the course of recovery and long-term outcome of people with prolonged disorders of consciousness (PDOC). OBJECTIVE: To determine long-term outcomes (mortality, recovery of consciousness, disability, functioning, and independence) in people with PDOC after early intensive neurorehabilitation (EIN) within a novel nationwide PDOC care pathway. METHODS: Prospective cohort study with 2-year follow-up. All people with PDOC admitted to EIN at a single rehabilitation center in the Netherlands were screened for inclusion. Baseline measurements of level of consciousness (CRS-R), disability (DRS), and functioning (FIM) were collected at rehabilitation admission, and follow-up was at 14, 28, 40, 52 and 104 weeks post admission. RESULTS: Of 129 participants included (mean age 38.1 years, SD 16.4), 33 (26%) patients died, and 80 (62%) regained consciousness within the 2-year follow-up. From them, 56 (43%) regained consciousness during 14 weeks of EIN, 14 (11%) within 6 months after admission, and 10 (8%) between 6- and 24-month follow-up. Mean level of disability and functioning significantly increased over time, with the largest improvement between 14- and 28-week post admission. Amongst responders who regained consciousness, the proportion of participants functioning independently (FIM total score ≥78) increased from 4% (3/78) at 14 weeks to 41% (25/61) at 2-year follow-up. CONCLUSIONS: Improvement of level of consciousness, disability, and functioning in people with PDOC occurs beyond the early stages of specialized neurorehabilitation until 2 years post injury, despite substantial mortality. These results highlight the need for specialized care for people with PDOC during the first 2 years after their injury, which focuses on both functional recovery and personalized decision-making. PROTOCOL REGISTRATION NUMBER: International Clinical Trial registry Platform (ICTRP) of the World Health Organization (WHO): NL-OMON23779.