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

Tim S Ellison; Stefano F Cappa; Dawne Garrett; Jean Georges; Takeshi Iwatsubo; Joel H Kramer; Maryna Lehmann; Constantine Lyketsos; Andrea B Maier; Jennifer Merrilees; John C Morris; Sharon L Naismith; Flavio Nobili; Marco Pahor; Dimity Pond; Louise Robinson; Pinar Soysal; Mathieu Vandenbulcke; Christopher J Weber; Pieter Jelle Visser; Michael Weiner; Giovanni B Frisoni

doi:10.1002/alz.12945

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

Alzheimers Dement. 2023 Jun;19(6):2707-2729. doi: 10.1002/alz.12945. Epub 2023 Feb 7.

Authors

Tim S Ellison¹, Stefano F Cappa^{2

3}, Dawne Garrett⁴, Jean Georges⁵, Takeshi Iwatsubo^{6

7}, Joel H Kramer⁸, Maryna Lehmann⁹, Constantine Lyketsos¹⁰, Andrea B Maier^{11

12

13

14}, Jennifer Merrilees⁸, John C Morris¹⁵, Sharon L Naismith¹⁶, Flavio Nobili^{17

18}, Marco Pahor¹⁹, Dimity Pond²⁰, Louise Robinson²¹, Pinar Soysal^{22

23}, Mathieu Vandenbulcke^{24

25}, Christopher J Weber²⁶, Pieter Jelle Visser^{27

28

29}, Michael Weiner^{30

31}, Giovanni B Frisoni^{32

33}

Affiliations

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

Introduction: We aim to provide guidance on outcomes and measures for use in patients with Alzheimer's clinical syndrome.

Methods: A consensus group of 20 voting members nominated by 10 professional societies, and a non-voting chair, used a Delphi approach and modified GRADE criteria.

Results: Consensus 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.

Discussion: This 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.

Keywords: Alzheimer's disease; Delphi; consensus; dementia; measures; outcomes.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Alzheimer Disease* / diagnosis
Alzheimer Disease* / therapy
Consensus
Delphi Technique
Humans
Outcome Assessment, Health Care
Quality of Life

Abstract

Publication types

MeSH terms

Grants and funding