Department of Neurology, Institute of Clinical Neuroscience and Institute of Neuroscience and Physiology, Sahlgrenska University Hospital, Göteborg, Sweden.
Palliat Support Care. 2013 Jun;11(3):183-9. doi: 10.1017/S1478951512000089. Epub 2012 Sep 27.
The aim of this study was to compare self-estimates of the physical, psychological, and general well-being of patients with amyotrophic lateral sclerosis (ALS) and their next of kin with the assessment of the nurses and physician of these participants.
The well-being of 35 pairs of patients and their next of kin was rated by themselves, and by a physician and nurses. The well-being was examined over time, using a visual analogue scale (VAS). Patients' physical function was estimated at the same time with the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised and the Norris scale.
The correlations between the staff's estimates of the well-being of patients and next of kin were similar to their own estimates, even though staff to a higher degree estimated a decrease in well-being over time among the patients. The estimates by the nurses correlated better to that of the patients and next of kin in psychological and general well-being than the physicians' estimates did.
Even though the staff's estimates of participants were roughly equivalent to their self-estimates, there were some differences. This result calls attention to the importance of working in teams in which different professional roles are combined and integrated, making it possible to form a holistic view of the situation of each family. A concern overlooked by one member of staff might be covered by another, and different focuses on the family may give a better composite picture of their life situation, which could lead to better support to the family.
本研究旨在比较肌萎缩侧索硬化症（ALS）患者及其家属的自我评估与护士和医生对这些参与者的评估，比较他们在身体、心理和一般健康方面的状况。
使用视觉模拟评分（VAS），对 35 对患者及其家属的幸福感进行了自评以及医护人员的评定。同时，使用肌萎缩侧索硬化功能评定量表修订版和诺里斯量表评估患者的身体功能。
即使医护人员对患者和家属的幸福感评估随着时间的推移逐渐下降，医护人员对患者和家属幸福感的评估与他们自己的评估之间的相关性与他们自己的评估相似。护士对心理和整体健康的评估与患者和家属的评估相关性较好，而医生的评估相关性较差。
尽管医护人员对参与者的评估大致等同于他们的自我评估，但仍存在一些差异。这一结果提醒我们团队合作的重要性，其中不同的专业角色被结合和整合，从而可以形成对每个家庭情况的整体看法。一个工作人员忽略的问题可能会被另一个工作人员所关注，而对家庭的不同关注点可能会更好地反映他们的生活状况，从而为家庭提供更好的支持。
