Outcome measures for Alzheimer's disease: A global inter‐societal Delphi consensus

Author:

Ellison Tim S.1,Cappa Stefano F.23,Garrett Dawne4,Georges Jean5,Iwatsubo Takeshi67,Kramer Joel H.8,Lehmann Maryna9,Lyketsos Constantine10,Maier Andrea B.11121314,Merrilees Jennifer8,Morris John C.15,Naismith Sharon L.16,Nobili Flavio1718,Pahor Marco19,Pond Dimity20,Robinson Louise21,Soysal Pinar2223,Vandenbulcke Mathieu2425,Weber Christopher J.26,Visser Pieter Jelle272829,Weiner Michael3031,Frisoni Giovanni B.3233

Affiliation:

1. PharmaGenesis London London UK

2. Scuola Universitaria Superiore IUSS Pavia Pavia Italy

3. Dementia Research Center IRCCS Mondino Foundation Pavia Italy

4. Royal College of Nursing London UK

5. Alzheimer Europe Luxembourg Luxembourg

6. Unit for Early and Exploratory Clinical Development The University of Tokyo Hospital Tokyo Japan

7. Department of Neuropathology Graduate School of Medicine The University of Tokyo Tokyo Japan

8. Department of Neurology, Memory and Aging Center University of California San Francisco California USA

9. World Dementia Council George South Africa

10. Richman Family Precision Medicine Center of Excellence in Alzheimer's Disease Department of Psychiatry and Behavioral Sciences Johns Hopkins University and Medicine Baltimore USA

11. Department of Medicine and Aged Care The Royal Melbourne Hospital The University of Melbourne Melbourne Victoria Australia

12. Faculty of Behavioural and Movement Sciences Department of Human Movement Sciences Vrije Universiteit Amsterdam Movement Sciences Amsterdam Netherlands

13. Healthy Longevity Translational Research Program Yong Loo Lin School of Medicine National University of Singapore Singapore

14. Centre for Healthy Longevity National University Health System Singapore Singapore

15. Department of Neurology Washington University St. Louis Missouri USA

16. School of Psychology The University of Sydney Sydney New South Wales Australia

17. UO Clinica Neurologica Istituto di Ricovero e Cura a Carattere Scientifico Ospedale Policlinico San Martino Genova Italy

18. Department of Neuroscience, Rehabilitation, Ophthalmology, Genetics, and Child and Mother Health University of Genoa Genova Italy

19. Department of Aging and Geriatric Research Institute on Aging University of Florida College of Medicine Gainesville Florida USA

20. Faculty of Health and Medicine School of Medicine and Public Health University of Newcastle Newcastle New South Wales Australia

21. Population Health Sciences Institute Newcastle University Newcastle upon Tyne UK

22. Department of Geriatric Medicine Faculty of Medicine Bezmialem Vakif University Istanbul Turkey

23. European Society of Geriatric Medicine Dementia Special Interest Group

24. Neuropsychiatry, Department of Neurosciences Leuven Brain Institute KU Leuven Leuven Belgium

25. Geriatric Psychiatry University Psychiatric Centre KU Leuven Leuven Belgium

26. Alzheimer's Association Chicago Illinois USA

27. Department of Psychiatry and Neuropsychology School for Mental Health and Neuroscience (MHeNS) Maastricht University Maastricht Netherlands

28. Alzheimer Center Department of Neurology Neuroscience Campus Amsterdam Amsterdam University Medical Center VU Medical Center Amsterdam Netherlands

29. Department of Neurobiology, Care Sciences and Society Division of Neurogeriatrics, Karolinska Institute Stockholm Sweden

30. San Francisco Veterans Affairs Medical Center San Francisco California USA

31. Department of Radiology and Biomedical Imaging University of California San Francisco California USA

32. Laboratory of Neuroimaging of Aging (LANVIE) University of Geneva Geneva Switzerland

33. Memory Clinic Department of Readaptation and Geriatrics Geneva University and University Hospitals Geneva Switzerland

Abstract

AbstractIntroductionWe aim to provide guidance on outcomes and measures for use in patients with Alzheimer's clinical syndrome.MethodsA consensus group of 20 voting members nominated by 10 professional societies, and a non‐voting chair, used a Delphi approach and modified GRADE criteria.ResultsConsensus was reached on priority outcomes (n = 66), measures (n = 49) and statements (n = 37) across nine domains. A number of outcomes and measurement instruments were ranked for: Cognitive abilities; Functional abilities/dependency; Behavioural and neuropsychiatric symptoms; Patient quality of life (QoL); Caregiver QoL; Healthcare and treatment‐related outcomes; Medical investigations; Disease‐related life events; and Global outcomes.DiscussionThis work provides indications on the domains and ideal pertinent measurement instruments that clinicians may wish to use to follow patients with cognitive impairment. More work is needed to develop instruments that are more feasible in the context of the constraints of clinical routine.

Publisher

Wiley

Subject

Psychiatry and Mental health,Cellular and Molecular Neuroscience,Geriatrics and Gerontology,Neurology (clinical),Developmental Neuroscience,Health Policy,Epidemiology

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