An international core outcome set for primary progressive aphasia (COS-PPA): Consensus-based recommendations for communication interventions across research and clinical settings

Anna Volkmer; Emily Viega Alves; Hagit Bar-Zeev; Elena Barbieri; Petronilla Battista; Ashleigh Beales; Barbara Costa Beber; Emilie Brotherhood; Ines Ribeiro Cadorio; Maria Teresa Carthery-Goulart; Jade Cartwright; Sebastian Crutch; Karen Croot; Maria Isabel d´Ávila Freitas; Jeanne Gallée; Stephanie M. Grasso; Katarina Haley; Heleen Hendriksen; Shalom Henderson; Lize Jiskoot; Isabel Junqueira Almeida; Jackie Kindell; Rachel Kingma; Lorinda L.Y. Kwan-Chen; Monica Lavoie; Adi Lifshitz-Ben-Basat; Regina Jokel; Aurore Mahut-Dubos; Jordi A. Matias-Guiu; Michèle Masson-Trottier; Marcus Meinzer; Ellen McGowan; Carolina Mendez-Orellana; Aaron M. Meyer; Carly Millanski; Núria Montagut; Aimee Mooney; Darby J. Morhardt; Lyndsey Nickels; Monica Norvik; Iris Edda Nowenstein; Avanthi Paplikar; Margaret Pozzebon; Antoine Renard; Leanne Ruggero; Emily Rogalski; Anna U. Rysop; Fredrik Sand Aronsson; Aida Suárez-González; Sharon Savage; Mai Tran Thi; Kyriana Tsapkini; Cathleen Taylor-Rubin; Donna C. Tippett; Nina Unger; Lizet van Ewijk; Sandra Wielaert; Ingvild Elisabeth Winsnes; Anne Whitworth; Ibrahim Can Yasa; David Copland; Maya L. Henry; Jason D. Warren; Rosemary Varley; Sarah J. Wallace; Chris J.D. Hardy

doi:10.1002/alz.14362

An international core outcome set for primary progressive aphasia (COS-PPA): Consensus-based recommendations for communication interventions across research and clinical settings

Anna Volkmer, Emily Viega Alves, Hagit Bar-Zeev, Elena Barbieri, Petronilla Battista, Ashleigh Beales, Barbara Costa Beber, Emilie Brotherhood, Ines Ribeiro Cadorio, Maria Teresa Carthery-Goulart, Jade Cartwright, Sebastian Crutch, Karen Croot, Maria Isabel d´Ávila Freitas, Jeanne Gallée, Stephanie M. Grasso, Katarina Haley, Heleen Hendriksen, Shalom Henderson, Lize JiskootIsabel Junqueira Almeida, Jackie Kindell, Rachel Kingma, Lorinda L.Y. Kwan-Chen, Monica Lavoie, Adi Lifshitz-Ben-Basat, Regina Jokel, Aurore Mahut-Dubos, Jordi A. Matias-Guiu, Michèle Masson-Trottier, Marcus Meinzer, Ellen McGowan, Carolina Mendez-Orellana, Aaron M. Meyer, Carly Millanski, Núria Montagut, Aimee Mooney, Darby J. Morhardt, Lyndsey Nickels, Monica Norvik, Iris Edda Nowenstein, Avanthi Paplikar, Margaret Pozzebon, Antoine Renard, Leanne Ruggero, Emily Rogalski, Anna U. Rysop, Fredrik Sand Aronsson, Aida Suárez-González, Sharon Savage, Mai Tran Thi, Kyriana Tsapkini, Cathleen Taylor-Rubin, Donna C. Tippett, Nina Unger, Lizet van Ewijk, Sandra Wielaert, Ingvild Elisabeth Winsnes, Anne Whitworth, Ibrahim Can Yasa, David Copland, Maya L. Henry, Jason D. Warren, Rosemary Varley, Sarah J. Wallace, Chris J.D. Hardy

Department of Communication Disorders

Research output: Contribution to journal › Article › peer-review

Abstract

INTRODUCTION: Interventions to treat speech-language difficulties in primary progressive aphasia (PPA) often use word accuracy as a highly comparable outcome. However, there are more constructs of importance to people with PPA that have received less attention. METHODS: Following Core Outcome Set Standards for Development Recommendations (COSSTAD), this study comprised: Stage 1 – systematic review to identify measures; Stage 2 – consensus groups to identify important outcome constructs for people with PPA (n = 82) and care partners (n = 91); Stage 3 – e-Delphi consensus with 57 researchers. RESULTS: The systematic review identified 84 Outcome Measurement Instruments. Core outcome constructs identified included: (1) Participate in conversations with family and friends, (2) get words out, (3) be more fluent, (4) convey a message by any means, and (5) understand what others are saying. Researchers were unable to reach a consensus on measurement instruments. DISCUSSION: Further work is required to develop appropriate measurement instruments that address all core outcome constructs important to key stakeholders. Highlights: We introduce new symptom-led perspectives on primary progressive aphasia (PPA). The focus is on non-fluent/agrammatic (nfvPPA) and semantic (svPPA) variants. Foregrounding of early and non-verbal features of PPA and clinical trajectories is featured. We introduce a symptom-led staging scheme for PPA. We propose a prototype for a functional impairment scale, the PPA Progression Planning Aid.

Original language	English
Article number	e14362
Journal	Alzheimer's and Dementia
Volume	21
Issue number	1
DOIs	https://doi.org/10.1002/alz.14362
State	Published - Jan 2025

Keywords

core outcome set
dementia
interventions
outcome measures
primary progressive aphasia
speech and language therapy

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10.1002/alz.14362

Cite this

Volkmer, A., Alves, E. V., Bar-Zeev, H., Barbieri, E., Battista, P., Beales, A., Beber, B. C., Brotherhood, E., Cadorio, I. R., Carthery-Goulart, M. T., Cartwright, J., Crutch, S., Croot, K., Freitas, M. I. DÁ., Gallée, J., Grasso, S. M., Haley, K., Hendriksen, H., Henderson, S., ... Hardy, C. J. D. (2025). An international core outcome set for primary progressive aphasia (COS-PPA): Consensus-based recommendations for communication interventions across research and clinical settings. Alzheimer's and Dementia, 21(1), Article e14362. https://doi.org/10.1002/alz.14362

@article{0b8b6e50d8d343598df753b768bcdb8d,

title = "An international core outcome set for primary progressive aphasia (COS-PPA): Consensus-based recommendations for communication interventions across research and clinical settings",

abstract = "INTRODUCTION: Interventions to treat speech-language difficulties in primary progressive aphasia (PPA) often use word accuracy as a highly comparable outcome. However, there are more constructs of importance to people with PPA that have received less attention. METHODS: Following Core Outcome Set Standards for Development Recommendations (COSSTAD), this study comprised: Stage 1 – systematic review to identify measures; Stage 2 – consensus groups to identify important outcome constructs for people with PPA (n = 82) and care partners (n = 91); Stage 3 – e-Delphi consensus with 57 researchers. RESULTS: The systematic review identified 84 Outcome Measurement Instruments. Core outcome constructs identified included: (1) Participate in conversations with family and friends, (2) get words out, (3) be more fluent, (4) convey a message by any means, and (5) understand what others are saying. Researchers were unable to reach a consensus on measurement instruments. DISCUSSION: Further work is required to develop appropriate measurement instruments that address all core outcome constructs important to key stakeholders. Highlights: We introduce new symptom-led perspectives on primary progressive aphasia (PPA). The focus is on non-fluent/agrammatic (nfvPPA) and semantic (svPPA) variants. Foregrounding of early and non-verbal features of PPA and clinical trajectories is featured. We introduce a symptom-led staging scheme for PPA. We propose a prototype for a functional impairment scale, the PPA Progression Planning Aid.",

keywords = "core outcome set, dementia, interventions, outcome measures, primary progressive aphasia, speech and language therapy",

author = "Anna Volkmer and Alves, {Emily Viega} and Hagit Bar-Zeev and Elena Barbieri and Petronilla Battista and Ashleigh Beales and Beber, {Barbara Costa} and Emilie Brotherhood and Cadorio, {Ines Ribeiro} and Carthery-Goulart, {Maria Teresa} and Jade Cartwright and Sebastian Crutch and Karen Croot and Freitas, {Maria Isabel d´{\'A}vila} and Jeanne Gall{\'e}e and Grasso, {Stephanie M.} and Katarina Haley and Heleen Hendriksen and Shalom Henderson and Lize Jiskoot and Almeida, {Isabel Junqueira} and Jackie Kindell and Rachel Kingma and Kwan-Chen, {Lorinda L.Y.} and Monica Lavoie and Adi Lifshitz-Ben-Basat and Regina Jokel and Aurore Mahut-Dubos and Matias-Guiu, {Jordi A.} and Mich{\`e}le Masson-Trottier and Marcus Meinzer and Ellen McGowan and Carolina Mendez-Orellana and Meyer, {Aaron M.} and Carly Millanski and N{\'u}ria Montagut and Aimee Mooney and Morhardt, {Darby J.} and Lyndsey Nickels and Monica Norvik and Nowenstein, {Iris Edda} and Avanthi Paplikar and Margaret Pozzebon and Antoine Renard and Leanne Ruggero and Emily Rogalski and Rysop, {Anna U.} and {Sand Aronsson}, Fredrik and Aida Su{\'a}rez-Gonz{\'a}lez and Sharon Savage and Thi, {Mai Tran} and Kyriana Tsapkini and Cathleen Taylor-Rubin and Tippett, {Donna C.} and Nina Unger and {van Ewijk}, Lizet and Sandra Wielaert and Winsnes, {Ingvild Elisabeth} and Anne Whitworth and Yasa, {Ibrahim Can} and David Copland and Henry, {Maya L.} and Warren, {Jason D.} and Rosemary Varley and Wallace, {Sarah J.} and Hardy, {Chris J.D.}",

note = "Publisher Copyright: {\textcopyright} 2024 The Author(s). Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.",

year = "2025",

month = jan,

doi = "10.1002/alz.14362",

language = "אנגלית",

volume = "21",

journal = "Alzheimer's and Dementia",

issn = "1552-5260",

publisher = "John Wiley and Sons Inc.",

number = "1",

}

Volkmer, A, Alves, EV, Bar-Zeev, H, Barbieri, E, Battista, P, Beales, A, Beber, BC, Brotherhood, E, Cadorio, IR, Carthery-Goulart, MT, Cartwright, J, Crutch, S, Croot, K, Freitas, MIDÁ, Gallée, J, Grasso, SM, Haley, K, Hendriksen, H, Henderson, S, Jiskoot, L, Almeida, IJ, Kindell, J, Kingma, R, Kwan-Chen, LLY, Lavoie, M, Lifshitz-Ben-Basat, A, Jokel, R, Mahut-Dubos, A, Matias-Guiu, JA, Masson-Trottier, M, Meinzer, M, McGowan, E, Mendez-Orellana, C, Meyer, AM, Millanski, C, Montagut, N, Mooney, A, Morhardt, DJ, Nickels, L, Norvik, M, Nowenstein, IE, Paplikar, A, Pozzebon, M, Renard, A, Ruggero, L, Rogalski, E, Rysop, AU, Sand Aronsson, F, Suárez-González, A, Savage, S, Thi, MT, Tsapkini, K, Taylor-Rubin, C, Tippett, DC, Unger, N, van Ewijk, L, Wielaert, S, Winsnes, IE, Whitworth, A, Yasa, IC, Copland, D, Henry, ML, Warren, JD, Varley, R, Wallace, SJ & Hardy, CJD 2025, 'An international core outcome set for primary progressive aphasia (COS-PPA): Consensus-based recommendations for communication interventions across research and clinical settings', Alzheimer's and Dementia, vol. 21, no. 1, e14362. https://doi.org/10.1002/alz.14362

An international core outcome set for primary progressive aphasia (COS-PPA): Consensus-based recommendations for communication interventions across research and clinical settings. / Volkmer, Anna; Alves, Emily Viega; Bar-Zeev, Hagit et al.
In: Alzheimer's and Dementia, Vol. 21, No. 1, e14362, 01.2025.

Research output: Contribution to journal › Article › peer-review

TY - JOUR

T1 - An international core outcome set for primary progressive aphasia (COS-PPA)

T2 - Consensus-based recommendations for communication interventions across research and clinical settings

AU - Volkmer, Anna

AU - Alves, Emily Viega

AU - Bar-Zeev, Hagit

AU - Barbieri, Elena

AU - Battista, Petronilla

AU - Beales, Ashleigh

AU - Beber, Barbara Costa

AU - Brotherhood, Emilie

AU - Cadorio, Ines Ribeiro

AU - Carthery-Goulart, Maria Teresa

AU - Cartwright, Jade

AU - Crutch, Sebastian

AU - Croot, Karen

AU - Freitas, Maria Isabel d´Ávila

AU - Gallée, Jeanne

AU - Grasso, Stephanie M.

AU - Haley, Katarina

AU - Hendriksen, Heleen

AU - Henderson, Shalom

AU - Jiskoot, Lize

AU - Almeida, Isabel Junqueira

AU - Kindell, Jackie

AU - Kingma, Rachel

AU - Kwan-Chen, Lorinda L.Y.

AU - Lavoie, Monica

AU - Lifshitz-Ben-Basat, Adi

AU - Jokel, Regina

AU - Mahut-Dubos, Aurore

AU - Matias-Guiu, Jordi A.

AU - Masson-Trottier, Michèle

AU - Meinzer, Marcus

AU - McGowan, Ellen

AU - Mendez-Orellana, Carolina

AU - Meyer, Aaron M.

AU - Millanski, Carly

AU - Montagut, Núria

AU - Mooney, Aimee

AU - Morhardt, Darby J.

AU - Nickels, Lyndsey

AU - Norvik, Monica

AU - Nowenstein, Iris Edda

AU - Paplikar, Avanthi

AU - Pozzebon, Margaret

AU - Renard, Antoine

AU - Ruggero, Leanne

AU - Rogalski, Emily

AU - Rysop, Anna U.

AU - Sand Aronsson, Fredrik

AU - Suárez-González, Aida

AU - Savage, Sharon

AU - Thi, Mai Tran

AU - Tsapkini, Kyriana

AU - Taylor-Rubin, Cathleen

AU - Tippett, Donna C.

AU - Unger, Nina

AU - van Ewijk, Lizet

AU - Wielaert, Sandra

AU - Winsnes, Ingvild Elisabeth

AU - Whitworth, Anne

AU - Yasa, Ibrahim Can

AU - Copland, David

AU - Henry, Maya L.

AU - Warren, Jason D.

AU - Varley, Rosemary

AU - Wallace, Sarah J.

AU - Hardy, Chris J.D.

PY - 2025/1

Y1 - 2025/1

N2 - INTRODUCTION: Interventions to treat speech-language difficulties in primary progressive aphasia (PPA) often use word accuracy as a highly comparable outcome. However, there are more constructs of importance to people with PPA that have received less attention. METHODS: Following Core Outcome Set Standards for Development Recommendations (COSSTAD), this study comprised: Stage 1 – systematic review to identify measures; Stage 2 – consensus groups to identify important outcome constructs for people with PPA (n = 82) and care partners (n = 91); Stage 3 – e-Delphi consensus with 57 researchers. RESULTS: The systematic review identified 84 Outcome Measurement Instruments. Core outcome constructs identified included: (1) Participate in conversations with family and friends, (2) get words out, (3) be more fluent, (4) convey a message by any means, and (5) understand what others are saying. Researchers were unable to reach a consensus on measurement instruments. DISCUSSION: Further work is required to develop appropriate measurement instruments that address all core outcome constructs important to key stakeholders. Highlights: We introduce new symptom-led perspectives on primary progressive aphasia (PPA). The focus is on non-fluent/agrammatic (nfvPPA) and semantic (svPPA) variants. Foregrounding of early and non-verbal features of PPA and clinical trajectories is featured. We introduce a symptom-led staging scheme for PPA. We propose a prototype for a functional impairment scale, the PPA Progression Planning Aid.

AB - INTRODUCTION: Interventions to treat speech-language difficulties in primary progressive aphasia (PPA) often use word accuracy as a highly comparable outcome. However, there are more constructs of importance to people with PPA that have received less attention. METHODS: Following Core Outcome Set Standards for Development Recommendations (COSSTAD), this study comprised: Stage 1 – systematic review to identify measures; Stage 2 – consensus groups to identify important outcome constructs for people with PPA (n = 82) and care partners (n = 91); Stage 3 – e-Delphi consensus with 57 researchers. RESULTS: The systematic review identified 84 Outcome Measurement Instruments. Core outcome constructs identified included: (1) Participate in conversations with family and friends, (2) get words out, (3) be more fluent, (4) convey a message by any means, and (5) understand what others are saying. Researchers were unable to reach a consensus on measurement instruments. DISCUSSION: Further work is required to develop appropriate measurement instruments that address all core outcome constructs important to key stakeholders. Highlights: We introduce new symptom-led perspectives on primary progressive aphasia (PPA). The focus is on non-fluent/agrammatic (nfvPPA) and semantic (svPPA) variants. Foregrounding of early and non-verbal features of PPA and clinical trajectories is featured. We introduce a symptom-led staging scheme for PPA. We propose a prototype for a functional impairment scale, the PPA Progression Planning Aid.

KW - core outcome set

KW - dementia

KW - interventions

KW - outcome measures

KW - primary progressive aphasia

KW - speech and language therapy

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U2 - 10.1002/alz.14362

DO - 10.1002/alz.14362

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AN - SCOPUS:85208958312

SN - 1552-5260

VL - 21

JO - Alzheimer's and Dementia

JF - Alzheimer's and Dementia

IS - 1

M1 - e14362

ER -

An international core outcome set for primary progressive aphasia (COS-PPA): Consensus-based recommendations for communication interventions across research and clinical settings

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