Presentation (CTI)

OBJECTIVES: The What Matters Most (WMM) in Alzheimer’s disease (AD) research program has explored treatment-related needs, preferences, and priorities of people at risk or living with Alzheimer’s disease (PLWAD) and their care partners. To address an important data gap, estimates of health-related quality of life (HRQOL) and health utility were assessed across the full spectrum of disease in AD.
METHODS: As part of a prospective, cross-sectional survey, the EQ-5D-5L and Quality of Life in AD (QOL-AD) instruments were administered to participants in the United States (US) spanning 5 severity groups, including individuals at risk of or with preclinical AD, with mild cognitive impairment (MCI), or with mild AD, and care partners of individuals with moderate or severe AD. Recruitment targeted equal participation across groups and ≥50% people of color within each group. EQ-5D (domains, health utility) and QOL-AD (domains, total) scores were analyzed descriptively by group, and least squares analysis tested the significance of EQ-5D utility score differences across groups.
RESULTS: A total of 640 participants (375 PLWAD through mild AD; 265 care partners reporting on behalf of PLWAD with moderate or severe AD) completed the survey. Results consistently indicated that HRQOL impacts measured by EQ-5D and QOL-AD domains increased with AD severity. EQ-5D utility scores (mean [standard deviation]) for those at risk (0.75 [0.24]), with MCI (0.69 [0.19]), and with mild AD (0.67 [0.22]) were significantly higher (reflecting better HRQOL) than for those with moderate AD (0.53 [0.28]) and severe AD (0.40 [0.34]).
CONCLUSIONS: This study contributes to the existing literature on HRQOL in AD by providing evidence across the full AD spectrum that HRQOL consistently worsens on generic and AD-specific domains as severity increases. These results provide evidence of fundamental differences in the lived experience of AD across groups and can be used in future economic evaluations of new AD treatments.