The long-term outcome of patients with long lasting disorders of consciousness (DOC) caused by acute severe brain injury, particularly 5 years or more post injury, is a largely neglected area of research. Little is known about the survival, possible changes in level of consciousness, living situation, and functioning of DOC patients at longer follow-up periods. This study focuses on the long-term outcome of 34 young DOC patients, aged between 0 and 25, who were in a state of nonresponsive wakefulness or minimally consciousness, 1-6 months after suffering severe brain injury. Ten to twelve years earlier they participated in a specialized early intensive neurorehabilitation program that aims at the recovery of consciousness, as well as all physiological functions in order to enhance the possibilities for further rehabilitation.
Eleven patients have died in the meantime, of which 10 have never reached consciousness. Four patients still are in an unconscious state, while 19 are conscious. Fourteen are able to live independently, half of them with some support.
Obviously, a considerable number of the DOC patients, even still unconscious 1-6 months post-injury, can recover to a(n) (semi-)independent life in the long-term following specialized rehabilitation. On the other hand, patients who did not recover to consciousness have no chance for any recovery of function, and most of them will die within a couple of years. This knowledge may help care providers to inform and advise families during an intensive and uncertain period post-injury and to make decisions about the most appropriate treatment options.
Additionally, a documentary is made of three patients. It shows the progress they have made, or the lack of it. The patients and/or their relatives show the possibilities and talk about the difficulties they face: http://www.libranet.nl/vin.
Dutch publications about the study can be seen on the sites of the Volkskrant and RTL.
Eilander HJ, Wijnen VJ, Schouten EJ, Lavrijsen JC. Ten-to-twelve years after specialized neurorehabilitation of young patients with severe disorders of consciousness: A follow-up study. Brain Inj. 2016:1-9