Department of Neurology, Institute of Clinical Neuroscience and Institute of Neuroscience and Physiology, Sahlgrenska University Hospital, Göteborg, Sweden.
Palliat Support Care. 2010 Mar;8(1):75-82. doi: 10.1017/S1478951509990733. Epub 2010 Feb 18.
The aim of this study was to examine health-related quality of life (HRQoL), individual QoL, anxiety and depression in patients with amyotrophic lateral sclerosis (ALS) and their next of kin in relation to patients' physical function over time.
35 patients and their next of kin were studied using the Short Form-36 Health Survey (SF-36), Schedule for Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), and Hospital Anxiety and Depression Scale (HADS) and patients also by the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised and the Norris scale every fourth to sixth month, one to four times.
Changes were found over time in both patients and their next of kin in the SF-36 but not in the SEIQoL-DW or HADS. Patients rated worse than their next of kin in the SF-36 physical subscales and next of kin rated worse than the patients in the global QoL score in SEIQoL-DW. Health, hobbies, and total relations were important areas in the SEIQoL-DW among all participants, but some important areas also differed between the patients and their next of kin. In most important areas among the pairs, the next of kin estimated their functioning/satisfaction worse than patients estimated their functioning/satisfaction.
There were few changes over time in the QoL among the participants. Although most of the estimates in patients and their next of kin were equal, there were also some differences. These results emphasize the importance of support for both patients and their next of kin and that support ought to be given on both individual bases and together in pairs. The SEIQoL-DW might give signposts in the care through the course of the disease about what should be focused on to increase satisfaction of the important areas of life and might help the person to find coping strategies to handle his or her life situation.
本研究旨在探讨肌萎缩侧索硬化症（ALS）患者及其家属的健康相关生活质量（HRQoL）、个体生活质量、焦虑和抑郁与患者身体功能随时间的变化关系。
使用 35 名患者及其家属的简明 36 健康调查（SF-36）、个体生活质量评估时间表-直接加权（SEIQoL-DW）和医院焦虑抑郁量表（HADS），以及患者的肌萎缩侧索硬化功能评定量表修订版和诺里斯量表，每 4 至 6 个月评估一次，共 1 至 4 次。
患者及其家属的 SF-36 在随访过程中发生了变化，但 SEIQoL-DW 和 HADS 没有变化。SF-36 身体子量表中，患者自评比家属差，SEIQoL-DW 中，家属的总体生活质量评分比患者差。健康、爱好和总体关系是所有参与者 SEIQoL-DW 中的重要领域，但患者和家属之间也存在一些重要领域的差异。在大多数重要领域中，家属对自己的功能/满意度的估计比患者对自己的功能/满意度的估计更差。
参与者的生活质量随时间变化不大。尽管患者及其家属的大多数评估结果是一致的，但也存在一些差异。这些结果强调了对患者及其家属的支持的重要性，并且支持应该在个人基础上和以成对的形式提供。SEIQoL-DW 可能会在疾病过程中为护理提供路标，了解哪些方面需要关注，以提高生活重要领域的满意度，并帮助患者找到应对生活状况的应对策略。
