The importance of care partner input in Alzheimer’s disease (AD) drug development

Abstract

AbstractBackgroundIn AD, the role of the care partner (CP) is essential to therapeutic development due to their gradually increasing role over the course of disease progression. Many current trials require CPs to report on patient symptoms later in the disease. Studies have also suggested that the role of the care partner‐patient dyad may be linked to reliable outcomes in drug development. However, there are issues in data collection via patient proxy due to concerns around reliability of information and reporting bias.MethodsThe AD PACE WMM Study assessed needs and priorities of patients and CPs throughout AD through both qualitative and quantitative methods. In both phases of the WMM study, patients in the earlier stages of disease served as their own reporters: those with clinical pathology of AD (Group 1), with MCI (Group 2), and with mild AD (Group 3) served as their own reporters. CPs for those with moderate (Group 4) or severe AD (Group 5) reported what was important to them as CPs. Qualitative results were used to develop patient and CP surveys in which respondents rated the importance of 42 items.ResultsCPs (n=119) were mostly women in their mid‐50s with high SES statuses. The average age of the corresponding care recipients was approximately 80 years and most were women. In general, CPs rated items related to the emotional well‐being of the care recipient (e.g., having a sense of self‐worth; not feeling down, depressed, anxious, anxious, worried, stressed; not feeling like a burden to others) highly. When taken as a whole, mean CP ratings for what is important to them were equal to or lower than mean patient ratings, especially for items with lowest importance ratings (driving, not having difficulty with work, planning and organizing activities).ConclusionUnderstanding and identifying the multiple ways in which CPs can provide critical input in AD therapeutic development needs further investigation. The WMM study identified emotional well‐being as a key priority for CPs for those with moderate or severe AD. Future studies and guidance should examine opportunities for CP input on drug development as CPs provide critical perspectives on the AD patient experience.