The SEIQoL-DW for assessing quality of life in ALS: strengths and limitations

Amyotrophic Lateral Sclerosis : Official Publication of the World Federation of Neurology Research Group on Motor Neuron Diseases
Stephanie H FelgoiseZ Simmons

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.

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Citations

Aug 3, 2011·Journal of Neurology·Dorothée LuléAlbert C Ludolph
Feb 9, 2012·Psychology, Health & Medicine·Francesco TramontiBruno Rossi
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Apr 21, 2016·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·Stephanie H FelgoiseZachary Simmons
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