Development of an instrument to collect data on utilization of rehabilitation care in patients with severe disorders of consciousness in post-acute care settings.

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Patients with severe consciousness disorders after traumatic and non-traumatic brain injuries require a high level of care when discharged from hospital. Since the prognosis regarding functioning and disability is unclear, it is likely that these patients have a high additional need for rehabilitative services. There is a wide range of rehabilitation services offered to those patients, however the utilization of these services is not yet investigated systematically. In addition, there is a lack of studies investigating the association of those rehabilitation services and important outcomes, such as functioning, rehospitalization, or survival.An instrument which documents nature and extent of rehabilitation services is required to make the care of patients with severe consciousness disorders accessible for detailed analysis and therefore supports informed decision making. Thus, the objectives of this study are:(1) To get an overview of proposed and actually implemented rehabilitative services for patients with severe consciousness disorders through a systematic review of literature.(2) To amend and validate the findings of the systematic review by means of an survey of experts in treatment, care and management of patients with severe consciousness disorders.(3) To development of an instrument based on the results of the systematic literature review and the expert survey.(4) To test and pilot the developed instruments in the context of an already established registry for patients with severe consciousness disorders.