肌萎缩侧索硬化症患者及其家属的健康状况随时间的变化。
Well-being in patients with amyotrophic lateral sclerosis and their next of kin over time.
机构信息
Department of Neurology, Institute of Clinical Neuroscience, Sahlgrenska University Hospital, Göteborg, Sweden.
出版信息
Acta Neurol Scand. 2010 Apr;121(4):244-50. doi: 10.1111/j.1600-0404.2009.01191.x. Epub 2009 Dec 17.
OBJECTIVES
The well-being and physical function among patients with ALS and their next of kin was studied over time.
MATERIALS AND METHODS
Thirty-five patients with ALS and their next of kin were studied with respect to physical, general and psychological well-being by the visual analogue scale (VAS) every 4-6 months. Physical function in patients was rated by the ALSFRS-R and the Norris scale. Patients and next of kin rated the well-being of themselves and their counterpart.
RESULTS
The well-being was stable and there was a relation between the well-being of patients and next of kin throughout the time studied. Next of kin rated the well-being of the patients worse than patients rated themselves, while patients rated the well-being of their next of kin at the same level as their counterpart.
CONCLUSIONS
The basic state of well-being as well as the interaction between patient and next of kin seem to be factors that influence the well-being of both patients and their next of kin.
目的
研究 ALS 患者及其家属的幸福感和身体功能随时间的变化情况。
材料与方法
通过视觉模拟量表（VAS），每 4-6 个月对 35 名 ALS 患者及其家属的身体、一般和心理幸福感进行评估。使用 ALSFRS-R 和 Norris 量表评估患者的身体功能。患者及其家属分别对自己和对方的幸福感进行评分。
结果
在整个研究期间，患者及其家属的幸福感保持稳定，且存在相关性。家属对患者的幸福感评分低于患者自评，而患者对其家属的幸福感评分与对方自评相当。
结论
基本幸福感状况以及患者及其家属之间的相互作用似乎是影响患者及其家属幸福感的因素。
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