Assessing the Agreement Between Self- and Proxy-Reported Responses for Measuring Health-Related Quality of Life in People With Dementia Using the Alzheimer’s Disease 5 Dimensions Instrument

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OBJECTIVES: The level of agreement between utility values derived from self- and proxy reports, assessed using the preference-based health-related quality-of-life (HRQoL) instrument, the Alzheimer's Disease 5 Dimensions (AD-5D), remains unclear. We aimed to investigate the agreement between self- and proxy-reported HRQoL, measured using the AD-5D, a dementia-specific, preference-based HRQoL instrument. METHODS: The data comprise 77 Australian dyads of people with dementia and their caregivers. The agreement between AD-5D utility values derived from self- and proxy reports was analyzed using a Bland-Altman plot. The ordinary least squares regression technique was used to identify factors associated with the AD-5D utility value sets and to assess agreement between the resulting AD-5D utility values derived from self- and proxy reports. RESULTS: The mean AD-5D utility value derived from self-reports (0.667) was higher than the value derived from proxy reports (0.523). The Bland-Altman plot shows that 7.79% of the differences in AD-5D utility values fell outside the limits of agreement. The regression results indicated that the AD-5D utility value derived from self-reports for people with dementia aged 80 years or older was, on average, 0.20 points lower (β = 0.20, standard error = 0.10) than that for people with dementia aged less than 70 years. CONCLUSIONS: Utility values derived from self-reports were higher than those derived from caregiver proxy reports. Although proxy reporting is a necessary alternative when self-reporting is not feasible, these perspectives are not interchangeable. Future economic evaluations should incorporate sensitivity analyses to account for this systematic "proxy gap."

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