Assessing What Matters to People Affected by Alzheimer’s Disease: A Quantitative Analysis

Abstract

Introduction:In this phase of the ongoing What Matters Most study series, designed to evaluate concepts that are meaningful to people affected by Alzheimer's disease (AD), we quantified the importance of symptoms, impacts, and outcomes of AD to people at risk for or with AD and care partners of people with AD. Methods: We administered a web-based survey to individuals at risk for or with AD (Group 1: unimpaired cognition with evidence of AD pathology; Group 2: AD risk factors and subjective cognitive complaints/mild cognitive impairment; Group 3: mild AD) and to care partners of individuals with moderate AD (Group 4) or severe AD (Group 5). Respondents rated the importance of 42 symptoms, impacts, and outcomes on a scale ranging from 1 (''not at all important'') to 5 (''extremely important'').John Winfield-Deceased (2022).

Technical Review of Clinical Outcomes Assessments Across the Continuum of Alzheimer's Disease

“…During the second phase of WMM, 274 people identified by clinicians as living with or at risk for AD, or those with self-reported confirmed genetic risk profile, and their care partners completed an online survey to rate the importance, on a scale of 1-5, of the 42 treatment-related outcomes identified in phase 1, thereby further supporting and confirming the qualitative findings [2]. This quantitative evaluation confirmed that all WMM items were at least moderately important to all patient groups (minimum importance rating, 3.4; maximum rating, 4.6), and most were at least moderately important to both care partner groups (minimum importance rating, 2.1; maximum rating, 4.4).…”

“…In phase 1 of WMM, we conducted qualitative research with individuals at risk for or living with mild AD and care partners of individuals with more advanced AD to identify a comprehensive set of 42 AD symptoms, impacts, and treatment-related outcomes that are meaningful to individuals across the AD continuum [1]. Building on this qualitative study, Hauber et al [2] evaluated the concepts that are meaningful to people affected by AD and quantified the importance of symptoms, impacts, and outcomes of AD to people at risk for or with AD and care partners of people with AD. As a third stage in this integrated and iterative research process, this study examined the relationship between concepts of importance identified by patients and care partners in the What Matters Most study series [2] and concepts assessed in frequently used COAs.…”

“…Building on this qualitative study, Hauber et al [2] evaluated the concepts that are meaningful to people affected by AD and quantified the importance of symptoms, impacts, and outcomes of AD to people at risk for or with AD and care partners of people with AD. As a third stage in this integrated and iterative research process, this study examined the relationship between concepts of importance identified by patients and care partners in the What Matters Most study series [2] and concepts assessed in frequently used COAs. Among the 42 WMM concepts, 10 concepts matched to items on 6 or more COAs, and every WMM concept was represented in 1 or more of the 20 COAs reviewed, even if not always an exact or perfect conceptual equivalent.…”

“…These findings provide important and relevant content validity for this group of COAs that correlate most robustly with the WMM concepts. Notably, concepts of emotional or behavioral well-being were rated among the WMM items of highest importance [2], but were not always included in the COAs reviewed. When examining COAs that measure concepts relating to emotional or behavioral well-being, the NPI mapped most closely to WMM items.…”

“…did not adequately reflect the spirit of the WMM content (is able to live on your/their own), but assessed similar abilities/functioning were noted and coded accordingly (in yellow); COA concepts that were not included in the WMM list were also noted. Specifically, matches in content mapping from individual measures to WMM concepts were determined by how closely the COA content addressed the specific WMM concept, as identified in the in-depth interviews with 60 individuals [1] and quantified in the second phase of the WMM study with 274 individuals [2]. Multiple checks of mapping were performed by two researchers, one of whom was the primary interviewer for the WMM phase 1 study (D.D.…”