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

创伤性和非创伤性脑损伤后出现严重意识障碍的患者在出院时需要高水平的护理。由于关于功能和残疾的预后尚不清楚，这些患者可能对康复服务有很高的额外需求。为这些病人提供了广泛的康复服务，但这些服务的利用情况尚未进行系统调查。此外，缺乏调查这些康复服务与重要结果（如功能、再住院或生存）之间关系的研究。需要一种记录康复服务性质和程度的工具，以便对严重意识障碍患者的护理进行详细分析，从而支持知情决策。因此，本研究的目的是：(1)通过系统的文献回顾，对严重意识障碍患者提出和实际实施的康复服务进行概述。(2)通过对重度意识障碍患者的治疗、护理和管理专家的调查，对系统评价的结果进行修正和验证。(3)基于系统的文献综述和专家调查的结果，开发一种仪器。(4)在已建立的严重意识障碍患者登记册中测试和试点开发的仪器。

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.