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

Activities of daily living Alzheimer's Disease Autonomy Burden Caregivers Healthcare professionals Memory Mild cognitive impairment Outcomes Patients Qualitative Quality of life Quantitative Systematic review

Journal

Alzheimer's & dementia (Amsterdam, Netherlands)
ISSN: 2352-8729
Titre abrégé: Alzheimers Dement (Amst)
Pays: United States
ID NLM: 101654604

Informations de publication

Date de publication:
Dec 2019
Historique:
entrez: 26 3 2019
pubmed: 25 3 2019
medline: 25 3 2019
Statut: epublish

Résumé

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. 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. 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. 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.

Identifiants

pubmed: 30906845
doi: 10.1016/j.dadm.2018.12.003
pii: S2352-8729(18)30085-X
pmc: PMC6411507
doi:

Types de publication

Journal Article

Langues

eng

Pagination

231-247

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Auteurs

Claire Tochel (C)

Centre for Medical Informatics, Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, UK.

Michael Smith (M)

Centre for Medical Informatics, Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, UK.

Helen Baldwin (H)

Centre for Medical Informatics, Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, UK.
University of Oxford, Oxford, UK.

Anders Gustavsson (A)

Quantify Research, Stockholm, Sweden.
Department of Neurobiology, Care Sciences & Society, Karolinska Institute, Stockholm, Sweden.
F. Hoffmann-La Roche Ltd., Basel, Switzerland.

Amanda Ly (A)

Centre for Medical Informatics, Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, UK.

Christin Bexelius (C)

F. Hoffmann-La Roche Ltd., Basel, Switzerland.

Mia Nelson (M)

Centre for Medical Informatics, Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, UK.

Christophe Bintener (C)

Alzheimer Europe, Luxembourg City, Luxembourg.

Enrico Fantoni (E)

GE Healthcare, Life Sciences, Amersham, UK.

Josep Garre-Olmo (J)

Girona Biomedical Research Institute (IdibGI), Girona, Catalonia, Spain.

Olin Janssen (O)

Department of Psychiatry & Neuropsychology, School for Mental Health & Neuroscience, Alzheimer Center Limburg, Maastricht University, Maastricht, the Netherlands.

Christoph Jindra (C)

Department of Psychiatry, University of Oxford, Oxford, UK.

Isabella F Jørgensen (IF)

Novo Nordisk Foundation Center for Protein Research, Faculty of Health & Medical Sciences, University of Copenhagen, Copenhagen, Denmark.

Alex McKeown (A)

University of Oxford, Oxford, UK.

Buket Öztürk (B)

Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark.

Anna Ponjoan (A)

Girona Biomedical Research Institute (IdibGI), Girona, Catalonia, Spain.
Vascular Health Research Group (ISV-Girona), Institut Universitari d'Investigació en Atenció Primària Jordi Gol (IDIAP Jordi Gol), Barcelona, Catalonia, Spain.

Michele H Potashman (MH)

Biogen, Cambridge, MA, USA.

Catherine Reed (C)

Eli Lilly and Company Limited, Windlesham, UK.

Emilse Roncancio-Diaz (E)

GE Healthcare, Life Sciences, Amersham, UK.

Stephanie Vos (S)

Department of Psychiatry & Neuropsychology, School for Mental Health & Neuroscience, Alzheimer Center Limburg, Maastricht University, Maastricht, the Netherlands.

Cathie Sudlow (C)

Centre for Medical Informatics, Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, UK.

Classifications MeSH