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

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 VisserMichael Weiner, Giovanni B. Frisoni

Research output: Contribution to Journal › Article › Academic › peer-review

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.

Original language	English
Pages (from-to)	2707-2729
Journal	Alzheimer's and Dementia
Volume	19
Issue number	6
DOIs	https://doi.org/10.1002/alz.12945
Publication status	Published - 1 Jun 2023

Funding

This initiative was initiated and funded by F. Hoffmann-La Roche Ltd.; however, F. Hoffmann-La Roche Ltd. was not involved in (1) the study design or the voting rounds; (2) the collection, analysis, and interpretation of data or the development of the consensus statements; (3) the writing of the report; or (4) the decision to submit the paper for publication. The consensus process was conducted and managed by PharmaGenesis London, a third-party agency, under the guidance of the Steering Committee. No honoraria were provided to the Steering Committee or the Expert Panel for participating in this initiative. No employee of F. Hoffmann-La Roche Ltd. Had any opportunity to review or edit the manuscript. Additional medical writing support was provided by Catherine Henderson, on behalf of PharmaGenesis London. This initiative was supported by F. Hoffmann-La Roche Ltd., which funded support from PharmaGenesis London. Additional medical writing support was provided by Catherine Henderson, on behalf of PharmaGenesis London. This initiative was supported by F. Hoffmann‐La Roche Ltd., which funded support from PharmaGenesis London.

Funders	Funder number
Expert Panel
F. Hoffmann-La Roche

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Ellison, T. S., Cappa, S. F., Garrett, D., Georges, J., Iwatsubo, T., Kramer, J. H., Lehmann, M., Lyketsos, C., Maier, A. B., Merrilees, J., Morris, J. C., Naismith, S. L., Nobili, F., Pahor, M., Pond, D., Robinson, L., Soysal, P., Vandenbulcke, M., Weber, C. J., ... Frisoni, G. B. (2023). Outcome measures for Alzheimer's disease: A global inter-societal Delphi consensus. Alzheimer's and Dementia, 19(6), 2707-2729. https://doi.org/10.1002/alz.12945

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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.",

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

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doi = "10.1002/alz.12945",

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Ellison, TS, Cappa, SF, Garrett, D, Georges, J, Iwatsubo, T, Kramer, JH, Lehmann, M, Lyketsos, C, Maier, AB, Merrilees, J, Morris, JC, Naismith, SL, Nobili, F, Pahor, M, Pond, D, Robinson, L, Soysal, P, Vandenbulcke, M, Weber, CJ, Visser, PJ, Weiner, M & Frisoni, GB 2023, 'Outcome measures for Alzheimer's disease: A global inter-societal Delphi consensus', Alzheimer's and Dementia, vol. 19, no. 6, pp. 2707-2729. https://doi.org/10.1002/alz.12945

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AU - Ellison, Tim S.

AU - Cappa, Stefano F.

AU - Garrett, Dawne

AU - Georges, Jean

AU - Iwatsubo, Takeshi

AU - Kramer, Joel H.

AU - Lehmann, Maryna

AU - Lyketsos, Constantine

AU - Maier, Andrea B.

AU - Merrilees, Jennifer

AU - Morris, John C.

AU - Naismith, Sharon L.

AU - Nobili, Flavio

AU - Pahor, Marco

AU - Pond, Dimity

AU - Robinson, Louise

AU - Soysal, Pinar

AU - Vandenbulcke, Mathieu

AU - Weber, Christopher J.

AU - Visser, Pieter Jelle

AU - Weiner, Michael

AU - Frisoni, Giovanni B.

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ER -

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

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