Identifying relevant outcomes in the progression of Alzheimer's disease; what do patients and care partners want to know about prognosis?

Abstract

Background: Prognostic studies in the context of Alzheimer's disease (AD) mainly predicted time to dementia. However, it is questionable whether onset of dementia is the most relevant outcome along the AD disease trajectory from the perspective of patients and their care partners. Therefore, we aimed to identify the most relevant outcomes from the viewpoint of patients and care partners. Methods:We used a two-step, mixed-methods approach. As a first step we conducted four focus groups in the Netherlands to elicit a comprehensive list of outcomes considered important by patients (n = 12) and care partners (n = 14) in the prognosis of AD. The focus groups resulted in a list of 59 items, divided into five categories. Next, in an online European survey, we asked participants (n = 232; 99 patients, 133 care partners) to rate the importance of all 59 items (5-point Likert scale). As participants were likely to rate a large number of outcomes as "important" (4) or "very important" (5), we subsequently asked them to select the three items they considered most important. Results:The top-10 lists of items most frequently mentioned as "most important" by patients and care partners were merged into one core outcome list, comprising 13 items. Both patients and care partners selected outcomes from the category "cognition" most often, followed by items in the categories "functioning and dependency" and "physical health." No items from the category "behavior and neuropsychiatry" and "social environment" ended up in our core list of relevant outcomes. Conclusion:We identified a core list of outcomes relevant to patients and care partner, and found that prognostic information related to cognitive decline, dependency, and physical health are considered most relevant by both patients and their care partners.

Development and design of a diagnostic report to support communication in dementia: Co‐creation with patients and care partners

“…In this study and others, 11,23,35 we found that patients want to know about their expected symptoms and progression rates. Furthermore, they indicated feeling left in ignorance after receiving the diagnosis 8 .…”

A longitudinal study on quality of life along the spectrum of Alzheimer’s disease

“…In an earlier study, we showed that the trajectory of QoL of patients is an important outcome from the perspective of patients and their caregivers, in both dementia and pre-dementia stages [ 9 ]. A recent review of QoL in individuals with normal cognition, MCI, and AD dementia identified several gaps in literature [ 6 ].…”

Disease progression in dementia with Lewy bodies: A longitudinal study on clinical symptoms, quality of life and functional impairment

“…The main strength of this study is the prospective design with thorough and systematic annual clinical assessment. Secondly, this study estimated the trajectories not only in terms of cognitive decline but also incorporated QoL, IADL and caregiver burden over time, outcomes that patients and caregivers identified as relevant outcome measures 41 . Few limitations should be noted.…”