Abstract
PurposeThis study aimed to empirically compare the measurement properties of self-reported and proxy-reported (in cases of severe cognitive impairment) generic (EQ-5D-5L) and condition-specific (DEMQOL-U and DEMQOL-Proxy-U) preference-based HRQoL instruments in residential care, where the population is characterised by older people with high rates of cognitive impairment, dementia and disability.MethodsParticipants were recruited from seventeen residential care facilities across four Australian states. One hundred and forty-three participants self-completed the EQ-5D-5L and the DEMQOL-U while three hundred and eight-seven proxy completed (due to the presence of severe dementia) the EQ-5D-5L and DEMQOL-Proxy-U. The convergent validity of the outcome measures and known group validity relative to a series of clinical outcome measures were assessed.ResultsResults satisfy convergent validity among the outcome measures. EQ-5D-5L and DEMQOL-U utilities were found to be significantly correlated with each other (p < 0.01) as were EQ-5D-5L and DEMQOL-Proxy-U utilities (p < 0.01). Both self-reported and proxy-reported EQ-5D-5L utilities demonstrated strong known group validity in relation to clinically recognised thresholds of cognition and physical functioning, while in contrast neither DEMQOL-U nor DEMQOL-Proxy-U demonstrated this association.ConclusionsThe findings suggest that the EQ-5D-5L, DEMQOL-U and DEMQOL-Proxy-U capture distinct aspects of HRQoL for this population. The measurement and valuation of HRQoL form an essential component of economic evaluation in residential care. However, high levels of cognitive impairment may preclude self-completion for a majority. Further research is needed to determine cognition thresholds beyond which an individual is unable to reliably self-report their own health-related quality of life.
Highlights
There is ongoing debate surrounding the ability of people with cognitive impairment and dementia to self-report their own health-related quality of life (HRQoL) [1, 2]
This issue is of particular importance for quality of life assessment and economic evaluations conducted in a residential care setting, where the majority of residents are living with cognitive impairment and dementia [3–6]
Over 50% of residents in Australian residential aged care facilities have a diagnosis of dementia and estimates indicate that up to 75% are living with some form of cognitive impairment [3]
Summary
There is ongoing debate surrounding the ability of people with cognitive impairment and dementia to self-report their own health-related quality of life (HRQoL) [1, 2]. This issue is of particular importance for quality of life assessment and economic evaluations conducted in a residential care setting, where the majority of residents are living with cognitive impairment and dementia [3–6]. The EQ-5D is a generic preference-based instrument for the measurement and valuation of HRQoL that is widely applied in economic evaluation. A recent study undertaken in Spain by Diaz-Redondo and colleagues found that quality of life as measured by the EQ-5D was rated higher by staff members caring for people with dementia compared to ratings given by family members [16]
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