Health utilities in Alzheimer's disease: A survey of patients and caregivers in the United States
Authors:
- 19 June 2025
- journal article
- Published by SAGE Publications in Journal of Alzheimer’s Disease
- Vol. 106 (3) , 943-953
Abstract
Background: The introduction of new Alzheimer's disease (AD) treatments necessitates updated health utilities for economic evaluations. Objective: Measure health utilities of US adults with mild cognitive impairment (MCI) and AD and their caregivers. Methods: We 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. Results: We 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. Conclusions: Our 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.Keywords
Funding Information
- Eli Lilly and Company
- Eisai
- Genentech
- Biogen
This publication has 32 references indexed in Scilit:
- Understanding the influence of different proxy perspectives in explaining the difference between self-rated and proxy-rated quality of life in people living with dementia: a systematic literature review and meta-analysisQuality of Life Research, 2024
- Evaluating Elements of the Care Partner Experience in Individuals Who Care for People with Alzheimer's Disease Across the Severity SpectrumNeurology and Therapy, 2023
- Ushering in a New Era of Alzheimer Disease TherapyJAMA, 2023
- Donanemab in Early Symptomatic Alzheimer DiseaseJAMA, 2023
- Estimated Annual Spending on Lecanemab and Its Ancillary Costs in the US Medicare ProgramJAMA Internal Medicine, 2023
- Valuing Alzheimer Disease Therapies—Considering Costs and Benefits Beyond the PatientJAMA Network Open, 2021
- Health utility in preclinical and prodromal Alzheimer's disease for establishing the value of new disease‐modifying treatments—EQ‐5D data from the Swedish BioFINDER studyAlzheimer's & Dementia, 2021
- Family and Caregiver Spillover Effects in Cost-Utility Analyses of Alzheimer’s Disease InterventionsPharmacoEconomics, 2019
- Quality of Life and Utility Measurement in a Large Clinical Trial Sample of Patients with Mild to Moderate Alzheimer’s Disease: Determinants and Level of Changes ObservedValue in Health, 2015
- Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L)Quality of Life Research, 2011