BACKGROUND: The Alzheimer's Disease Patient and Caregiver Engagement (AD PACE) Initiative works to identify and measure treatment-related needs, preferences, and priorities of individuals across the continuum of AD. In the What Matters Most (WMM) study, we identified concepts of interest among patients and care partners and derived 42 items from these concepts.
METHOD: Respondents were recruited primarily from US clinical sites and assigned by a clinician to one of five groups: (1) AD risk factors without subjective memory complaints (SMC), (2) AD risk factors and SMC, and (3) mild AD, and care partners of patients with (4) moderate AD or (5)severe AD. Survey was administered online. Items were individually rated using a 5-pointverbal rating scale from 1 (Not at all important) to 5 (Extremely important). Responses wereanalyzed by group. Care partners (groups 4 and 5) rated item importance for themselves, not aspatient proxies.
RESULTS: Two hundred seventy-four respondents (50-65 in each group) completed the survey. Among all respondents, 193 (70.4%) were female, 173 (63.1%) identified as white, and 221 (80.7%) had education beyond high school. Among the three patient groups, the minimum (maximum) mean importance rating for any item was 3.4 (4.6) indicating all items were at least moderately to very important. Among care partners of patients with more severe AD, the minimum (maximum) mean importance rating was 2.1 (4.4); most items were rated as at least moderately important. One item (driving) was rated as less than a little important in group 5. Five items were among the most important for all groups: taking medications correctly, not feeling down or depressed, not feeling anxious, worried or stressed, being able to stay safe, not feeling like a burden to others.
CONCLUSION: For SMC and mild AD patients and those at risk for AD, all items were important. Among care partners of more severe patients, most items were important, and one was unimportant. These results may indicate that the 42 items in the WMM survey capture symptoms and behaviors that are meaningful to patients and care partners and should be considered when evaluating impacts of potential AD treatments.
