Children and young adults in a prolonged unconscious state after severe brain injury: Long-term functional outcome as measured by the DRS and the GOSE after early intensive neurorehabilitation

Objective: To investigate the long-term (2-15 years) functional outcome of children and young adults who received an early intensive neurorehabilitation programme (EINP) after a prolonged period of unconsciousness due to severe brain injury; to differentiate between traumatic brain injury (TBI) and non-traumatic brain injury (nTBI); and to compare the results on two different outcome scales: the Disability Rating Scale (DRS) and the Glasgow Outcome Scale Extended (GOSE). Subjects: One hundred and forty-five patients, who were admitted to EINP between December 1987 and January 2001. Outcome measures: The Post-Acute Level of Consciousness scale (PALOC-s), the DRS, including categorized scores (DRScat), and the GOSE. Results: The long-term functional level of 90 patients could be determined, of whom 25 were deceased. The mean DRSscore of the surviving patients was 6.8 (SD = 6.6) - the mean score on the GOSE was 4.5 (SD = 1.7). There was a significant difference in the outcome amongst traumatic and non-traumatic patients (t((88)) = 4.21; 3 p < 0.01). The correlation between the DRS and the GOSE was high (Spearman rho = 0.85; p < 0.01), as well as the correlation between the categorized scores of the DRS and the GOSE (Spearman rho = 0.81; p < 0.01). The distribution of outcome scores on the DRScat is more diverse than on the GOSH. Especially item 7 of the DRS, measuring functional independence, showed considerable variance in discriminating between different outcome levels. Conclusions: More patients with TBI than expected reached a (semi-) independent level of functioning, indicating a possible effect of EINP. Patients suffering from nTBI did not demonstrate these outcome levels. Only a few patients stayed in a vegetative state for more than a couple of years. In this cohort of severe brain-injured young people, the DRS offered the best investigative possibilities for long-term level of functioning.