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Abstract：
OBJECTIVE: Surrogate decision-making by family caregivers for patients with severe brain injury is influenced by the availability and understanding of relevant information and expectations for future rehabilitation. We aimed to compare the consistency of family caregivers\' perceptions with clinical diagnoses and to inform their expectation of prognosis in the future.
METHODS: The Coma Recovery Scale-Revised was used to assess the diagnosis of inpatients with severe brain injury between February 2019 and February 2020. A main family caregiver was included per patient. The family caregiver\'s perception of the patient\'s consciousness and expectations of future recovery were collected through questionnaires and compared consistently with the clinical diagnosis.
RESULTS: The final sample included 101 main family caregivers of patients (57 UWS, unresponsive wakefulness syndrome, 37 MCS, minimally conscious state, 7 EMCS, emergence from MCS) with severe brain injury. Only 57 family caregivers correctly assessed the level of consciousness as indicated by the CRS-R, showing weak consistency (Kappa = 0.217, P = 0.002). Family caregivers\' demographic characteristics and CRS-R diagnosis influenced the consistency between perception and clinical diagnosis. Family caregivers who provided hands-on care to patients showed higher levels of consistent perception (AOR = 12.24, 95% CI = 2.06-73.00, P = 0.006). Compared to UWS, the family caregivers of MCS patients were more likely to have a correct perception (OR = 7.68, 95% CI = 1.34-44.06). Family caregivers had positive expectations for patients\' recovery in terms of both communication and returning to normal life.
CONCLUSIONS: Nearly half of family caregivers have inadequate understanding of their relative\'s level of consciousness, and most of them report overly optimistic expectations that do not align with clinical diagnosis. Providing more medical information to family caregivers to support their surrogate decision-making process is essential.
METHODS: The Coma Recovery Scale-Revised was used to assess the diagnosis of inpatients with severe brain injury between February 2019 and February 2020. A main family caregiver was included per patient. The family caregiver\'s perception of the patient\'s consciousness and expectations of future recovery were collected through questionnaires and compared consistently with the clinical diagnosis.
RESULTS: The final sample included 101 main family caregivers of patients (57 UWS, unresponsive wakefulness syndrome, 37 MCS, minimally conscious state, 7 EMCS, emergence from MCS) with severe brain injury. Only 57 family caregivers correctly assessed the level of consciousness as indicated by the CRS-R, showing weak consistency (Kappa = 0.217, P = 0.002). Family caregivers\' demographic characteristics and CRS-R diagnosis influenced the consistency between perception and clinical diagnosis. Family caregivers who provided hands-on care to patients showed higher levels of consistent perception (AOR = 12.24, 95% CI = 2.06-73.00, P = 0.006). Compared to UWS, the family caregivers of MCS patients were more likely to have a correct perception (OR = 7.68, 95% CI = 1.34-44.06). Family caregivers had positive expectations for patients\' recovery in terms of both communication and returning to normal life.
CONCLUSIONS: Nearly half of family caregivers have inadequate understanding of their relative\'s level of consciousness, and most of them report overly optimistic expectations that do not align with clinical diagnosis. Providing more medical information to family caregivers to support their surrogate decision-making process is essential.
摘要：
目的：对于重型颅脑损伤患者，家庭护理人员的替代决策受相关信息的可用性和理解以及对未来康复的期望的影响。我们旨在比较家庭照顾者的认知与临床诊断的一致性，并告知他们对未来预后的期望。
方法：使用修订的昏迷恢复量表评估2019年2月至2020年2月期间严重脑损伤住院患者的诊断。每位患者包括一名主要家庭护理人员。通过问卷调查收集家庭照顾者对患者意识的感知和对未来康复的期望，并与临床诊断进行一致比较。
结果：最终样本包括101名患者的主要家庭照顾者（57名UWS，反应迟钝的觉醒综合症，37MCS，最低意识状态，7EMCS,从MCS中出现）并伴有严重的脑损伤。只有57名家庭护理人员正确评估了CRS-R所显示的意识水平，显示弱一致性(Kappa=0.217，P=0.002)。家庭照顾者的人口统计学特征和CRS-R诊断影响感知和临床诊断之间的一致性。为患者提供动手护理的家庭护理人员显示出更高水平的一致感知（AOR=12.24，95％CI=2.06-73.00，P=0.006）。与UWS相比，MCS患者的家庭照顾者更可能有正确的认知(OR=7.68,95%CI=1.34~44.06).家庭照顾者在沟通和恢复正常生活方面对患者的康复有积极的期望。
结论：近一半的家庭照顾者对其亲属的意识水平了解不足，他们中的大多数人报告了与临床诊断不符的过于乐观的预期。向家庭护理人员提供更多的医疗信息以支持他们的代理决策过程至关重要。
方法：使用修订的昏迷恢复量表评估2019年2月至2020年2月期间严重脑损伤住院患者的诊断。每位患者包括一名主要家庭护理人员。通过问卷调查收集家庭照顾者对患者意识的感知和对未来康复的期望，并与临床诊断进行一致比较。
结果：最终样本包括101名患者的主要家庭照顾者（57名UWS，反应迟钝的觉醒综合症，37MCS，最低意识状态，7EMCS,从MCS中出现）并伴有严重的脑损伤。只有57名家庭护理人员正确评估了CRS-R所显示的意识水平，显示弱一致性(Kappa=0.217，P=0.002)。家庭照顾者的人口统计学特征和CRS-R诊断影响感知和临床诊断之间的一致性。为患者提供动手护理的家庭护理人员显示出更高水平的一致感知（AOR=12.24，95％CI=2.06-73.00，P=0.006）。与UWS相比，MCS患者的家庭照顾者更可能有正确的认知(OR=7.68,95%CI=1.34~44.06).家庭照顾者在沟通和恢复正常生活方面对患者的康复有积极的期望。
结论：近一半的家庭照顾者对其亲属的意识水平了解不足，他们中的大多数人报告了与临床诊断不符的过于乐观的预期。向家庭护理人员提供更多的医疗信息以支持他们的代理决策过程至关重要。
