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 par

SUBMITTER: Mank A 

PROVIDER: S-EPMC8377775 | biostudies-literature | 2021

REPOSITORIES: biostudies-literature