title: The SEIQoL-DW for assessing quality of life in ALS: strengths and limitations.
abstract: 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.
authors.affiliation: Department of Psychology, Philadelphia College of Osteopathic Medicine, Philadelphia, Pennsylvania, USA.
authors.forename: Stephanie H
authors.initials: SH
authors.lastname: Felgoise
authors.forename: Jessica L
authors.initials: JL
authors.lastname: Stewart
authors.forename: Barbara A
authors.initials: BA
authors.lastname: Bremer
authors.forename: Susan M
authors.initials: SM
authors.lastname: Walsh
authors.forename: Mark B
authors.initials: MB
authors.lastname: Bromberg
authors.forename: Zachary
authors.initials: Z
authors.lastname: Simmons
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000503:physiopathology / Q000523:psychology; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D053580:Muscle Strength / Q000502:physiology; D011446:Prospective Studies; D011594:Psychometrics / Q000295:instrumentation*; D011597:Psychomotor Performance / Q000502:physiology; D011788:Quality of Life; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires