BACKGROUND: Understanding experiences and concepts important to people living with Alzheimer’s disease (PLWAD) and to their care partners is critical to developing drugs and services that provide meaningful benefit. The What Matters Most (WMM) research program previously identified 42 WMM concepts encompassing treatmentrelated needs and preferences of PLWAD and their care partners [1, 2]. Round two of the research aims to build upon previous WMM work to verify WMM concepts identified as meaningful by extending to a more diverse population and providing greater context for the lived experience of Alzheimer’s disease (AD) in consideration of stages across the AD continuum.
METHODS: A cross-sectional, single-visit observational study was conducted with PLWAD and care partners of PLWAD using semistructured, web-based interviews. Interviews sought to contextualize WMM concepts and determine whether concepts can be prioritized. To ensure that all needs, preferences, and priorities were assessed, participants were clinically confirmed and classified in 1 of 5 AD populations, ranging from Group 1 (people with AD risk or pathology, or their care partners) to Group 5 (care partners of people with severe AD). Interview data were systematically coded and reviewed using qualitative content analysis and thematic analysis methods [3]. Important concepts and dominant trends were identified and compared across interviews [4]. Descriptive statistics were summarized for demographic and clinical data.
RESULTS: The study population included 64 PLWAD (n=24) and care partners (n=40) spanning experiences across the full AD spectrum, from at-risk through severe disease. Both PLWAD and care partners were demographically diverse, representing a mix of sex, age, educational level, race, and ethnicity. Participants endorsed the importance of all 42 original WMM concepts and their categorization within the hypothesized domains of thought processing (14 concepts), daily activity (12), emotion (6), independence (4), communication (3), and social life/activity (3). Additionally, participants identified a few new candidate WMM concepts and suggested repositioning existing concepts to better describe the lived experience of AD. Respondents selected the descriptor “impact” most frequently to describe WMM concepts in their lived AD experience. Further, participants prioritized concepts, consistently articulated most and least important items across multiple example questions, and provided rationale for their rankings. Thought processing was most frequently identified as the most important treatment benefit (55%), though this decreased to 46% when PLWAD were analyzed separately. Additionally, treatment benefits affecting communication and independence were considered most important by more PLWAD (18% and 15%, respectively) than care partners (2% and 9%, respectively).
CONCLUSIONS: This phase of the WMM research program demonstrated endorsement of previously identified WMM concepts and their domain placement in a conceptual disease model and greater characterization of WMM by participants representing PLWAD and care partners across the AD continuum. These findings provide context for understanding WMM in AD and allows for refinement of the conceptual disease model. This model may serve as a useful roadmap to identify best-fit clinical outcome assessments and guide future clinical studies. Finally, our WMM research will inform development of a refined WMM survey for additional stakeholders, including clinicians, payers, and policymakers.
