Objective

Little is known about the long-term outcome of patients with disorders of consciousness (DOCs) such as unresponsive wakefulness syndrome (UWS) or minimally conscious state (MCS). We describe the disease course of a large group of DOC patients 2–14 years after brain damage.

Methods

In 102 patients (59 UWS, 43 MCS), clinical and demographic variables from disorder onset were related to the patients' outcomes 2–14 years after discharge. Etiology, age at event, time since onset, gender, and home care versus institutional care were assessed as predictors and similarities and differences between UWS and MCS determined.

Results

Seventy-one percent of the patients had passed away or showed no improvement in condition. Twenty-nine percent regained consciousness and developed some communicative capacities. The time a syndrome persisted did not predict clinical outcome in either condition. Six patients regained consciousness after more than 3 years. Of these, five had been UWS (42% of recovered UWS, three traumatic origins, one tumor, one hypoxia) and one MCS (5% of recovered MCS, traumatic origin). In UWS, younger patients, those cared for at home, and in tendency those with traumatic origins, were more likely to recover. In MCS, no reliable outcome predictors were found.

Interpretation

Current predictors are too vague for single patient predictions. This study identifies a subgroup of late-recovering patients, casting doubt on the 12-month boundary, after which UWS is stated to be permanent. Routine reexamination, use of more reliable outcome predictors and research determining optimal care settings are needed to inform the crucial decisions made for these patients.