Health utilities in Alzheimer's disease: A survey of patients and caregivers in the United States.

BackgroundThe introduction of new Alzheimer's disease (AD) treatments necessitates updated health utilities for economic evaluations.ObjectiveMeasure health utilities of US adults with mild cognitive impairment (MCI) and AD and their caregivers.MethodsWe conducted a web-based survey using the EuroQol EQ-5D-5L and Quality of Life in AD (QoL-AD), stratified by disease stage and care setting. Individuals with MCI or mild Alzheimer's dementia self-reported their utilities. Caregivers randomly received either a proxy survey to complete on behalf of the person with moderate to severe AD they cared for, or a caregiver survey that asked them to self-report their own utilities.ResultsWe received 241 patient responses and 176 caregiver responses. Patient EQ-5D-5L scores decreased monotonically as disease severity increased, with a 0.55 utility difference between individuals with MCI and severe AD in the community setting. EQ-5D-5L values were generally lower for individuals residing in nursing homes (0.04 to 0.78) compared to those in community settings (0.22 to 0.77). Patients' QoL-AD scores did not exhibit a consistent association with their disease severity. Similarly, caregivers' EQ-5D-5L scores did not exhibit a monotonic trend with the patient's disease severity, although caregiver utilities were generally higher for those caring for someone in a nursing home than for those caring for patients in the community.ConclusionsOur results contribute to improving AD economic evaluations by reflecting the lived experience of more contemporary populations and facilitating the value assessment of novel therapies that delay progression from MCI to more severe disease stages.