The SEIQoL-DW for Assessing Quality of Life in ALS: Strengths and Limitations

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Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, Vol: 10, Issue: 5, Page: 456-462

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Felgoise, Stephanie H.; Stewart, Jessica L.; Bremer, Barbara A.; Walsh, Susan M.; Bromberg, Mark B.; Simmons, Zachary
Activities of Daily Living; Adult; Aged; Amyotrophic Lateral Sclerosis; Cross-Sectional Studies; Female; Humans; Male; Middle Aged; Muscle Strength; Prospective Studies; Psychometrics; Psychomotor Performance; Quality of Life; Questionnaires; Severity of Illness Index; Medical Neurobiology; Medicine and Health Sciences
article description
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.