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 Vos; Catherine Sudlow

doi:https://doi.org/10.1016/j.dadm.2018.12.003

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 journal › Article › peer-review

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.

Original language	English
Journal	Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring
Early online date	9 Jan 2019
DOIs	https://doi.org/10.1016/j.dadm.2018.12.003
Publication status	E-pub ahead of print - 9 Jan 2019

Keywords

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

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https://doi.org/10.1016/j.dadm.2018.12.003

Sudlow jan19
2018 The Authors. Published by Elsevier Inc. on behalf of the Alzheimer’s Association. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/ 4.0/).
Final published version, 1.22 MBLicence: CC BY-NC-ND

https://www.dadm.alzdem.com/article/S2352-8729(18)30085-X/fulltextLicence: Creative Commons: Attribution No Derivatives (CC-BY-ND)

Cite this

Tochel, C., Smith, M., Baldwin, H., Gustavsson, A., Ly, A., Bexelius, C., Nelson, M., Bintener, C., Fantoni, E., Garre-Olmo, J., Janssen, O., Jindra, C., Jorgensen, I., McKeown, A., Ozturk, B., Ponjoan, A., Potashman, M., Reed, C., Roncancio-Diaz, E., ... Sudlow, C. (2019). What outcomes are important to patients with mild cognitive impairment or Alzheimer's disease, their caregivers, and health-care professionals? A systematic review. Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring. https://doi.org/10.1016/j.dadm.2018.12.003

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

abstract = "IntroductionClinical 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.MethodsA 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.ResultsParticipants 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.DiscussionEvidence 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.",

keywords = "Alzheimer's disease (AD), Mild Cognitive Impairment (MCI), systematic review, outcomes",

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

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Tochel, C, Smith, M, Baldwin, H, Gustavsson, A, Ly, A, Bexelius, C, Nelson, M, Bintener, C, Fantoni, E, Garre-Olmo, J, Janssen, O, Jindra, C, Jorgensen, I, McKeown, A, Ozturk, B, Ponjoan, A, Potashman, M, Reed, C, Roncancio-Diaz, E, Vos, S & Sudlow, C 2019, 'What outcomes are important to patients with mild cognitive impairment or Alzheimer's disease, their caregivers, and health-care professionals? A systematic review', Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring. https://doi.org/10.1016/j.dadm.2018.12.003

What outcomes are important to patients with mild cognitive impairment or Alzheimer's disease, their caregivers, and health-care professionals? A systematic review. / Tochel, Claire; Smith, Michael; Baldwin, Helen et al.

In: Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring, 09.01.2019.

Research output: Contribution to journal › Article › peer-review

TY - JOUR

T1 - What outcomes are important to patients with mild cognitive impairment or Alzheimer's disease, their caregivers, and health-care professionals? A systematic review

AU - Tochel, Claire

AU - Smith, Michael

AU - Baldwin, Helen

AU - Gustavsson, Anders

AU - Ly, Amanda

AU - Bexelius, Christin

AU - Nelson, Marion

AU - Bintener, Christophe

AU - Fantoni, Enrico

AU - Garre-Olmo, Josep

AU - Janssen, Olin

AU - Jindra, Christoph

AU - Jorgensen, Isabella

AU - McKeown, Alex

AU - Ozturk, Buket

AU - Ponjoan, Anna

AU - Potashman, Michele

AU - Reed, Catherine

AU - Roncancio-Diaz, Emilse

AU - Vos, Stephanie

AU - Sudlow, Catherine

PY - 2019/1/9

Y1 - 2019/1/9

N2 - IntroductionClinical 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.MethodsA 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.ResultsParticipants 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.DiscussionEvidence 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.

AB - IntroductionClinical 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.MethodsA 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.ResultsParticipants 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.DiscussionEvidence 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.

KW - Alzheimer's disease (AD)

KW - Mild Cognitive Impairment (MCI)

KW - systematic review

KW - outcomes

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DO - https://doi.org/10.1016/j.dadm.2018.12.003

M3 - Article

JO - Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring

JF - Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring

SN - 2352-8729

ER -

Tochel C, Smith M, Baldwin H, Gustavsson A, Ly A, Bexelius C et al. What outcomes are important to patients with mild cognitive impairment or Alzheimer's disease, their caregivers, and health-care professionals? A systematic review. Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring. 2019 Jan 9. Epub 2019 Jan 9. doi: https://doi.org/10.1016/j.dadm.2018.12.003

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

Abstract

Keywords

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