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ABSTRACT: Introduction
Clinical trials involving patients with Alzheimer's disease (AD) continue to try to identify disease-modifying treatments. Although trials are designed to meet regulatory and registration requirements, many do not measure outcomes of the disease most relevant to key stakeholders.Methods
A systematic review sought research that elicited information from people with AD, their caregivers, and health-care professionals on which outcomes of the disease were important. Studies published in any language between 2008 and 2017 were included.Results
Participants in 34 studies described 32 outcomes of AD. These included clinical (memory, mental health), practical (ability to undertake activities of daily living, access to health information), and personal (desire for patient autonomy, maintenance of identity) outcomes of the disease.Discussion
Evidence elicited directly from the people most affected by AD reveals a range of disease outcomes that are relevant to them but are not commonly captured in clinical trials of new treatments.
SUBMITTER: Tochel C
PROVIDER: S-EPMC6411507 | biostudies-literature | 2019 Dec
REPOSITORIES: biostudies-literature
Tochel Claire C Smith Michael M Baldwin Helen H Gustavsson Anders A Ly Amanda A Bexelius Christin C Nelson Mia M Bintener Christophe C Fantoni Enrico E Garre-Olmo Josep J Janssen Olin O Jindra Christoph C Jørgensen Isabella F IF McKeown Alex A Öztürk Buket B Ponjoan Anna A Potashman Michele H MH Reed Catherine C Roncancio-Diaz Emilse E Vos Stephanie S Sudlow Cathie C
Alzheimer's & dementia (Amsterdam, Netherlands) 20190307
<h4>Introduction</h4>Clinical trials involving patients with Alzheimer's disease (AD) continue to try to identify disease-modifying treatments. Although trials are designed to meet regulatory and registration requirements, many do not measure outcomes of the disease most relevant to key stakeholders.<h4>Methods</h4>A systematic review sought research that elicited information from people with AD, their caregivers, and health-care professionals on which outcomes of the disease were important. Stu ...[more]