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

Identifying relevant outcomes in the progression of Alzheimer's disease; what do patients and care partners want to know about prognosis? by Mank, Arenda (author);van Maurik, Ingrid S. (author);Bakker, Els D. (author);van de Glind, Esther M. M. (author);Jönsson, Linus (author);Kramberger, Milica G. (author);Novak, Petr (author);Diaz, Ana (author);Gove, Dianne (author);Scheltens, Philip (author);van der Flier, Wiesje M. (author);Visser, Leonie N. C. (author) is a Medicine article available to read on EtoBox.

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

## 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 patien

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

Author

Mank, Arenda (author);van Maurik, Ingrid S. (author);Bakker, Els D. (author);van de Glind, Esther M. M. (author);Jönsson, Linus (author);Kramberger, Milica G. (author);Novak, Petr (author);Diaz, Ana (author);Gove, Dianne (author);Scheltens, Philip (author);van der Flier, Wiesje M. (author);Visser, Leonie N. C. (author)

Publisher

Wiley

Published

2021

Language

EN

Field

Medicine (Health Sciences)