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; ROADMAP consortium

doi: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, 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 VosCathie Sudlow, ROADMAP consortium

Disease Systems Biology Program

6 Citations (Scopus)

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 and Dementia: Diagnosis, Assessment and Disease Monitoring
Volume	11
Pages (from-to)	231-247
Number of pages	17
ISSN	2352-8729
DOIs	https://doi.org/10.1016/j.dadm.2018.12.003
Publication status	Published - Dec 2019

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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., Jørgensen, I. F., McKeown, A., Öztürk, B., Ponjoan, A., Potashman, M. H., Reed, C., Roncancio-Diaz, E., ... ROADMAP consortium (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 and Dementia: Diagnosis, Assessment and Disease Monitoring, 11, 231-247. 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 and Dementia: Diagnosis, Assessment and Disease Monitoring, Vol. 11, 12.2019, p. 231-247.

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

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, Jørgensen, IF, McKeown, A, Öztürk, B, Ponjoan, A, Potashman, MH, Reed, C, Roncancio-Diaz, E, Vos, S, Sudlow, C & ROADMAP consortium 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 and Dementia: Diagnosis, Assessment and Disease Monitoring, vol. 11, pp. 231-247. 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 = "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.",

author = "Claire Tochel and Michael Smith and Helen Baldwin and Anders Gustavsson and Amanda Ly and Christin Bexelius and Mia Nelson and Christophe Bintener and Enrico Fantoni and Josep Garre-Olmo and Olin Janssen and Christoph Jindra and J{\o}rgensen, {Isabella F} and Alex McKeown and Buket {\"O}zt{\"u}rk and Anna Ponjoan and Potashman, {Michele H} and Catherine Reed and Emilse Roncancio-Diaz and Stephanie Vos and Cathie Sudlow and {ROADMAP consortium}",

year = "2019",

month = dec,

doi = "10.1016/j.dadm.2018.12.003",

language = "English",

volume = "11",

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journal = "Alzheimer's and Dementia: Diagnosis, Assessment and Disease Monitoring",

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TY - JOUR

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

T2 - A systematic review

AU - Tochel, Claire

AU - Smith, Michael

AU - Baldwin, Helen

AU - Gustavsson, Anders

AU - Ly, Amanda

AU - Bexelius, Christin

AU - Nelson, Mia

AU - Bintener, Christophe

AU - Fantoni, Enrico

AU - Garre-Olmo, Josep

AU - Janssen, Olin

AU - Jindra, Christoph

AU - Jørgensen, Isabella F

AU - McKeown, Alex

AU - Öztürk, Buket

AU - Ponjoan, Anna

AU - Potashman, Michele H

AU - Reed, Catherine

AU - Roncancio-Diaz, Emilse

AU - Vos, Stephanie

AU - Sudlow, Cathie

AU - ROADMAP consortium

PY - 2019/12

Y1 - 2019/12

N2 - 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.

AB - 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.

U2 - 10.1016/j.dadm.2018.12.003

DO - 10.1016/j.dadm.2018.12.003

M3 - Review

C2 - 30906845

SN - 2352-8729

VL - 11

SP - 231

EP - 247

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

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

ER -

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

Abstract

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