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. 2019 Mar 7:11:231-247.
doi: 10.1016/j.dadm.2018.12.003. eCollection 2019 Dec.

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  1 , Michael Smith  1 , Helen Baldwin  1   2 , Anders Gustavsson  3   4   5 , Amanda Ly  1 , Christin Bexelius  5 , Mia Nelson  1 , Christophe Bintener  6 , Enrico Fantoni  7 , Josep Garre-Olmo  8 , Olin Janssen  9 , Christoph Jindra  10 , Isabella F Jørgensen  11 , Alex McKeown  2 , Buket Öztürk  12 , Anna Ponjoan  8   13 , Michele H Potashman  14 , Catherine Reed  15 , Emilse Roncancio-Diaz  7 , Stephanie Vos  9 , Cathie Sudlow  1 ; ROADMAP consortium
Affiliations

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 et al. Alzheimers Dement (Amst). .

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.

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Figures

Fig. 1
Fig. 1
Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flowchart showing citation numbers in each stage of the screening process. Abbreviations: AD, Alzheimer's disease; MCI, mild cognitive impairment.
Fig. 2
Fig. 2
Map showing the number of studies recruiting participants from countries around the world (some studies included participants from more than one country and so are enumerated on the map more than once; see Table 3). Darker shading implies a larger number of studies within a country, as shown on the scale beneath the map.
Fig. 3
Fig. 3
Overlap of outcomes according to the stakeholder group which raised their importance and the number of studies in which they appeared.
See this image and copyright information in PMC

References

    1. Prince M.J. World Alzheimer Report 2015: the global impact of dementia: an analysis of prevalence, incidence, cost and trends. Alzheimer's Dis Int. 2015:1–87.
    1. Winblad B., Amouyel P., Andrieu S., Ballard C., Brayne C., Brodaty H. Defeating Alzheimer's disease and other dementias: a priority for European science and society. Lancet Neurol. 2016;15:455–532. - PubMed
    1. Scheltens P., Blennow K., Breteler M.M.B., de Strooper B., Frisoni G.B., Salloway S. Alzheimer's disease. Lancet. 2016;388:505–517. - PubMed
    1. Posner H., Curiel R., Edgar C., Hendrix S., Liu E., Loewenstein D.A. Outcomes Assessment in Clinical Trials of Alzheimer's Disease and its Precursors: Readying for Short-term and Long-term Clinical Trial Needs. Innov Clin Neurosci. 2017;14:22–29. - PMC - PubMed
    1. Cano S.J., Posner H.B., Moline M.L., Hurt S.W., Swartz J., Hsu T. The ADAS-cog in Alzheimer's disease clinical trials: psychometric evaluation of the sum and its parts. J Neurol Neurosurg Psychiatry. 2010;81:1363–1368. - PubMed