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.
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Bromberg et al. (2002) studied this question.
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