Felgoise Stephanie H, Stewart Jessica L, Bremer Barbara A, Walsh Susan M, Bromberg Mark B, Simmons Zachary
Department of Psychology, Philadelphia College of Osteopathic Medicine, Philadelphia, Pennsylvania, USA.
Amyotroph Lateral Scler. 2009 Oct-Dec;10(5-6):456-62. doi: 10.3109/17482960802444840.
The Schedule for the Evaluation of the Individual Quality of Life-Direct Weighting (SEIQoL-DW) has been used to measure quality of life (QoL) in small cohorts of individuals with ALS, but its suitability for assessing aggregate QoL for between-group comparisons is uncertain. We undertook a prospective study in which 120 patients with ALS completed two measures of QoL, the SEIQoL-DW and the McGill Quality of Life Single-Item Scale (MQoL-SIS). There was a weak correlation between the SEIQoL-DW index score and the MQoL-SIS. Only three of five cues accounted for a significant amount of variance in the MQoL-SIS, and even those accounted for only 12.8%-13.9% of the variance. Cues relating to family or significant other were chosen by over 90% of patients, and were the most heavily weighted. This study demonstrates that the SEIQoL-DW is of great value in identifying those factors which contribute to the psychosocial well-being of an individual with ALS. However, SEIQoL index scores may not reflect aggregate QoL of groups of patients with ALS, and may be measuring a construct other than QoL. Caution should be exercised in using the SEIQoL index score to measure QoL of groups, such as would be needed in interventional trials.
个体生活质量直接加权评估量表（SEIQoL-DW）已被用于测量一小群肌萎缩侧索硬化症（ALS）患者的生活质量（QoL），但其在评估组间比较的总体生活质量方面的适用性尚不确定。我们进行了一项前瞻性研究，120例ALS患者完成了两项生活质量测量，即SEIQoL-DW和麦吉尔生活质量单项量表（MQoL-SIS）。SEIQoL-DW指数得分与MQoL-SIS之间存在弱相关性。在MQoL-SIS中，五个线索中只有三个解释了显著比例的方差，即使是这三个线索也仅解释了12.8%-13.9%的方差。超过90%的患者选择了与家庭或重要他人相关的线索，且这些线索的权重最大。本研究表明，SEIQoL-DW在识别那些有助于ALS患者心理社会福祉的因素方面具有重要价值。然而，SEIQoL指数得分可能无法反映ALS患者群体的总体生活质量，可能测量的是生活质量以外的结构。在使用SEIQoL指数得分来测量群体的生活质量时应谨慎，例如在干预试验中所需要的那样。
