Disorders of Consciousness

Prolonged disorders of consciousness (PDOC) may occur after severe brain injury. Two diagnostics entities are distinguished within PDOC: unresponsive wakefulness syndrome (UWS, previously known as vegetative state) and minimally conscious state (MCS). Patients with PDOC may benefit from early intensive neurorehabilitation (EIN). In the Netherlands, the EIN programme is provided by one designated expert rehabilitation centre and forms the starting point of a dedicated chain of specialized rehabilitation and care for this group.
The DOCTOR study project aims to set up a registry and systematically investigate multiple short- and long-term outcomes of patients with PDOC who receive EIN. It is a single-centre prospective cohort study with a 2-year follow-up period. Patients with PDOC due to acute brain injury who receive EIN, aged 16 years and older, are included. Measurements will take place at the start of EIN, in week 5, 10, and at discharge from the EIN programme (duration = max 14 weeks) and at week 28, 40, 52, and 104 after admission to the EIN programme, following patients through the health care chain. Outcome measures are the changes over time in level of consciousness, using the Coma Recovery Scale-Revised; the frequency and type of medical complications; the mortality rate; level of disability, including the level of motor, cognitive, behavioural and emotional functioning; participation; and quality of life. Secondary outcomes include self-efficacy of caregivers, caregivers’ strain and cost-effectiveness of the programme. The DOCTOR study will provide insight in the recovery patterns and predictors of recovery for multiple outcomes in PDOC patients after treatment with EIN. The results of the study will enable us to benchmark and improve EIN and the organization of the health care chain, both for patients with PDOC and for their families. This project is funded by the Dutch Brain Foundation.