Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring (Dec 2019)

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,
  • Mia Nelson,
  • Christophe Bintener,
  • Enrico Fantoni,
  • Josep Garre‐Olmo,
  • Olin Janssen,
  • Christoph Jindra,
  • Isabella F. Jørgensen,
  • Alex McKeown,
  • Buket Öztürk,
  • Anna Ponjoan,
  • Michele H. Potashman,
  • Catherine Reed,
  • Emilse Roncancio‐Diaz,
  • Stephanie Vos,
  • Cathie Sudlow,
  • the ROADMAP consortium

DOI
https://doi.org/10.1016/j.dadm.2018.12.003
Journal volume & issue
Vol. 11, no. 1
pp. 231 – 247

Abstract

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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.

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