Comparison of instruments addressing quality of life in patients with ALS and their caregivers.
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.
Bromberg
Mark B
MB
Department of Neurology, University of Utah, Salt Lake City 84132, USA. mbromberg@hsc.utah.edu
Forshew
Dallas A
DA
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