What outcomes are important to patients with mild cognitive impairment or Alzheimer's disease, their caregivers, and health-care professionals? A systematic review

Claire Tochel, Michael Smith, Helen Baldwin, Anders Gustavsson, Amanda Ly, Christin Bexelius, Marion Nelson, Christophe Bintener, Enrico Fantoni, Josep Garre-Olmo, Olin Janssen, Christoph Jindra, Isabella Jorgensen, Alex McKeown, Buket Ozturk, Anna Ponjoan, Michele Potashman, Catherine Reed, Emilse Roncancio-Diaz, Stephanie VosCatherine Sudlow

Research output: Contribution to journalArticlepeer-review

Abstract / Description of output

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.
Original languageEnglish
JournalAlzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring
Early online date9 Jan 2019
DOIs
Publication statusE-pub ahead of print - 9 Jan 2019

Keywords / Materials (for Non-textual outputs)

  • Alzheimer's disease (AD)
  • Mild Cognitive Impairment (MCI)
  • systematic review
  • outcomes

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