title: Comparison of instruments addressing quality of life in patients with ALS and their caregivers.
abstract: Most quality of life (QoL) instruments for ALS focus on function. An open instrument, the Schedule for the Evaluation of Individual Quality of Life-Direct Weight (SEIQoL-DW) that asks subjects to nominate and rate QoL areas important at the time of evaluation, was given to patients and caregiver spouses. Patients also completed function-based instruments. Correlations were poor between SEIQoL-DW and function-based instruments. SEIQoL-DW scores were worse for caregivers than for patients, probably explained by shifts in patient expectations with disease progression.
authors.affiliation: Department of Neurology, University of Utah, Salt Lake City 84132, USA. mbromberg@hsc.utah.edu
authors.forename: Mark B
authors.initials: MB
authors.lastname: Bromberg
authors.forename: Dallas A
authors.initials: DA
authors.lastname: Forshew
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000503:physiopathology / Q000523:psychology*; D017028:Caregivers; D018450:Disease Progression; D006801:Humans; D008875:Middle Aged; D011788:Quality of Life; D013223:Statistics as Topic; D011795:Surveys and Questionnaires