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
N1 - Funding Information:
This project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under the grant agreement no.: 116020 (“ROADMAP”). This Joint Undertaking receives support from the European Union's Horizon 2020 research and innovation program and EFPIA .
Publisher Copyright:
© 2018 The Authors
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.
KW - Alzheimer's Disease
KW - Mild cognitive impairment
KW - Outcomes
KW - Systematic review
KW - Qualitative
KW - Quantitative
KW - Quality of life
KW - Memory
KW - Activities of daily living
KW - Autonomy
KW - Burden
KW - Patients
KW - Caregivers
KW - Healthcare professionals
U2 - 10.1016/j.dadm.2018.12.003
DO - 10.1016/j.dadm.2018.12.003
M3 - Article
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
IS - 1
ER -