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

Alzheimers Dement (Amst). 2019 Mar 7:11:231-247. doi: 10.1016/j.dadm.2018.12.003. eCollection 2019 Dec.

Authors

Claire Tochel¹, Michael Smith¹, Helen Baldwin^{1

2}, Anders Gustavsson^{3

4

5}, Amanda Ly¹, Christin Bexelius⁵, Mia Nelson¹, Christophe Bintener⁶, Enrico Fantoni⁷, Josep Garre-Olmo⁸, Olin Janssen⁹, Christoph Jindra¹⁰, Isabella F Jørgensen¹¹, Alex McKeown², Buket Öztürk¹², Anna Ponjoan^{8

13}, Michele H Potashman¹⁴, Catherine Reed¹⁵, Emilse Roncancio-Diaz⁷, Stephanie Vos⁹, Cathie Sudlow¹; ROADMAP consortium

Affiliations

¹ Centre for Medical Informatics, Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, UK.
² University of Oxford, Oxford, UK.
³ Quantify Research, Stockholm, Sweden.
⁴ Department of Neurobiology, Care Sciences & Society, Karolinska Institute, Stockholm, Sweden.
⁵ F. Hoffmann-La Roche Ltd., Basel, Switzerland.
⁶ Alzheimer Europe, Luxembourg City, Luxembourg.
⁷ GE Healthcare, Life Sciences, Amersham, UK.
⁸ Girona Biomedical Research Institute (IdibGI), Girona, Catalonia, Spain.
⁹ Department of Psychiatry & Neuropsychology, School for Mental Health & Neuroscience, Alzheimer Center Limburg, Maastricht University, Maastricht, the Netherlands.
¹⁰ Department of Psychiatry, University of Oxford, Oxford, UK.
¹¹ Novo Nordisk Foundation Center for Protein Research, Faculty of Health & Medical Sciences, University of Copenhagen, Copenhagen, Denmark.
¹² Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark.
¹³ Vascular Health Research Group (ISV-Girona), Institut Universitari d'Investigació en Atenció Primària Jordi Gol (IDIAP Jordi Gol), Barcelona, Catalonia, Spain.
¹⁴ Biogen, Cambridge, MA, USA.
¹⁵ Eli Lilly and Company Limited, Windlesham, UK.

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.

Keywords: 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.