Objectives: Previous work has not found correlations between standardized questionnaire measures of quality of life (QoL) and physical strength/functional ability in people with motor neuron disease (MND). Little is known about the relationship between ratings on an abbreviated self-generated measure of QoL, the Schedule for Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), and measures of functional status such as the Sickness Impact Profile (SIP), although the former has been rated by people with MND as providing a more valid measure of their own QoL than the latter. The aim of this study was to examine whether self-generated ratings of QoL correlated with measures of physical impairment and self-reported functional status, psychological wellbeing and self-reported cognitive functioning, and with factors such as social support, which elsewhere has been reported to be a determinant of QoL in MND.
Design: The present cross-sectional study investigated between SEIQoL-DW ratings and SIP and the relationship ALS Severity Scale (ALSSS) scores, as well as with self-reported anxiety, depression, social support and everyday cognitive functioning in 31 people with MND.
Results: Overall QoL ratings on the SEIQoL-DW failed to correlate with any of the ALSSS or SIP subscale scores. This was despite the fact that health was nominated as an important QoL-related category by 64.5% of the sample. QoL scores were, however, found to correlate positively with the existence of confiding and emotional support; they also correlated negatively with the presence of self-rated everyday cognitive difficulties but not with affective state.
Conclusions: Current findings support recent observations that individuals' ratings of their QoL cannot simply be equated with their physical impairment and functional limitations, and that support systems may be important. Cognitive functioning, known to be impaired in some people with MND, should also be considered when evaluating QoL.