Nygren Ingela, Askmark Håkan
Department of Neuroscience, Neurology, Uppsala University Hospital, Sweden.
J Palliat Med. 2006 Apr;9(2):304-8. doi: 10.1089/jpm.2006.9.304.
To continuously assess overall quality of life (QOL) and disease progression in patients with amyotrophic lateral sclerosis (ALS) at different stages of the disease and compare the results between these two variables.
DESIGN/SUBJECTS: Twenty-six patients with ALS were interviewed with a questionnaire to assess their QOL from 0 to 10, where 10 is the highest QOL and questions concerning physical function, psychological status, and civil status. Their disease progression was estimated by ALS Functioning Rating Scale (ALS FRS). Nine patients were interviewed only once and 17 patients were interviewed 2-7 times. The interviews were repeated every second visit (range, 4-7 months). All values were ranked and linear regression was used to calculate the slope of QOL and ALS FRS.
The mean QOL value for all 26 patients was 5.8 (0-10-point scale). For the 17 patients interviewed 2-7 times, which correspond to a follow-up period of 5-28 months, there was no significant change in QOL-value (p = 0.247) among the interviews despite a significant disease progression (p = 0.0001).
It can be concluded that ALS does not necessarily result in a low overall QOL and that despite disease progression overall QOL changes only slightly over time.
持续评估肌萎缩侧索硬化症（ALS）患者在疾病不同阶段的总体生活质量（QOL）和疾病进展情况，并比较这两个变量的结果。
设计/研究对象：对26例ALS患者进行问卷调查，以评估他们的生活质量（0至10分，10分为最高生活质量），问卷涉及身体功能、心理状态和社会状况等问题。通过ALS功能评定量表（ALS FRS）评估他们的疾病进展情况。9例患者仅接受了一次访谈，17例患者接受了2至7次访谈。每隔一次就诊（间隔时间为4至7个月）重复进行访谈。对所有数值进行排序，并使用线性回归计算生活质量和ALS FRS的斜率。
26例患者的平均生活质量值为5.8（0至10分制）。对于接受了2至7次访谈的17例患者，随访期为5至28个月，尽管疾病有显著进展（p = 0.0001），但各次访谈之间的生活质量值无显著变化（p = 0.247）。
可以得出结论，ALS不一定会导致总体生活质量低下，并且尽管疾病进展，但总体生活质量随时间仅略有变化。
