Ten-to-twelve years after specialized neurorehabilitation of young patients with severe disorders of consciousness: A follow-up study.

OBJECTIVE To explore the long-term outcome of young patients with disorders of consciousness who had received intensive neurorehabilitation. METHODS A cross-sectional cohort study, in which the survival, level of consciousness, functional independence, mobility, communication and living situation were determined by means of a structured questionnaire. The cohort consisted of 44 children and young adults, originally either in a prolonged Vegetative State/Unresponsive Wakefulness Syndrome (VS/UWS, n = 33) or a Minimally Conscious State (MCS, n = 11) who had received a specialized neurorehabilitation programme 10-12 years earlier. RESULTS Response rate was 72% (34/44). Eleven patients were deceased, 10 of whom were in VS/UWS or MCS at discharge from the programme. Of the remaining 23 patients, 19 were conscious. Twelve lived independently, of whom six required some household support. One conscious patient lived permanently in a long-term care facility. All other patients lived either independently or with their parents. None of the VS/UWS or MCS patients showed any functional recovery. CONCLUSION Two main long-term outcome scenarios can be recognized. Two-thirds of the participating patients who were conscious at programme discharge were able to live independently, whereas almost two-thirds of the participating patients who were in VS/UWS or MCS at discharge subsequently died.