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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dc.contributor.authorVolkmer, Anna
dc.contributor.authorAlves, Emily Viega
dc.contributor.authorBar-Zeev, Hagit
dc.contributor.authorBarbieri, Elena
dc.contributor.authorBattista, Petronilla
dc.contributor.authorBeales, Ashleigh
dc.contributor.authorBeber, Barbara Costa
dc.contributor.authorBrotherhood, Emilie
dc.contributor.authorCadorio, Ines Ribeiro
dc.contributor.authorCarthery-Goulart, Maria Teresa
dc.contributor.authorCartwright, Jade
dc.contributor.authorCrutch, Sebastian
dc.contributor.authorCroot, Karen
dc.contributor.authorFreitas, Maria Isabel d'Avila
dc.contributor.authorGallee, Jeanne
dc.contributor.authorGrasso, Stephanie M.
dc.contributor.authorHaley, Katarina
dc.contributor.authorHendriksen, Heleen
dc.contributor.authorHenderson, Shalom
dc.contributor.authorJiskoot, Lize
dc.contributor.authorAlmeida, Isabel Junqueira
dc.contributor.authorKindell, Jackie
dc.contributor.authorKingma, Rachel
dc.contributor.authorKwan-Chen, Lorinda L. Y.
dc.contributor.authorLavoie, Monica
dc.contributor.authorLifshitz-Ben-Basat, Adi
dc.contributor.authorJokel, Regina
dc.contributor.authorMahut-Dubos, Aurore
dc.contributor.authorMatias-Guiu, Jordi A.
dc.contributor.authorMasson-Trottier, Michele
dc.contributor.authorMeinzer, Marcus
dc.contributor.authorMcgowan, Ellen
dc.contributor.authorMendez-Orellana, Carolina
dc.contributor.authorMeyer, Aaron M.
dc.contributor.authorMillanski, Carly
dc.contributor.authorMontagut, Nuria
dc.contributor.authorMooney, Aimee
dc.contributor.authorMorhardt, Darby J.
dc.contributor.authorNickels, Lyndsey
dc.contributor.authorNorvik, Monica
dc.contributor.authorNowenstein, Iris Edda
dc.contributor.authorPaplikar, Avanthi
dc.contributor.authorPozzebon, Margaret
dc.contributor.authorRenard, Antoine
dc.contributor.authorRuggero, Leanne
dc.contributor.authorRogalski, Emily
dc.contributor.authorRysop, Anna U.
dc.contributor.authorSand Aronsson, Fredrik
dc.contributor.authorSuarez-Gonzalez, Aida
dc.contributor.authorSavage, Sharon
dc.contributor.authorThi, Mai Tran
dc.contributor.authorTsapkini, Kyriana
dc.contributor.authorTaylor-Rubin, Cathleen
dc.contributor.authorTippett, Donna C.
dc.contributor.authorUnger, Nina
dc.contributor.authorvan Ewijk, Lizet
dc.contributor.authorWielaert, Sandra
dc.contributor.authorWinsnes, Ingvild Elisabeth
dc.contributor.authorWhitworth, Anne
dc.contributor.authorYasa, Ibrahim Can
dc.contributor.authorCopland, David
dc.contributor.authorHenry, Maya L.
dc.contributor.authorWarren, Jason D.
dc.contributor.authorVarley, Rosemary
dc.contributor.authorWallace, Sarah J.
dc.contributor.authorHardy, Chris J. D.
dc.date.accessioned2025-01-21T00:03:53Z
dc.date.available2025-01-21T00:03:53Z
dc.date.issued2024
dc.description.abstractINTRODUCTIONInterventions 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.METHODSFollowing 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.RESULTSThe 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.DISCUSSIONFurther 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.
dc.fuente.origenWOS
dc.identifier.doi10.1002/alz.14362
dc.identifier.eissn1552-5279
dc.identifier.issn1552-5260
dc.identifier.urihttps://doi.org/10.1002/alz.14362
dc.identifier.urihttps://repositorio.uc.cl/handle/11534/95483
dc.identifier.wosidWOS:001356886500001
dc.language.isoen
dc.revistaAlzheimers & dementia
dc.rightsacceso restringido
dc.subjectcore outcome set
dc.subjectdementia
dc.subjectinterventions
dc.subjectoutcome measures
dc.subjectprimary progressive aphasia
dc.subjectspeech and language therapy
dc.titleAn international core outcome set for primary progressive aphasia (COS-PPA): Consensus-based recommendations for communication interventions across research and clinical settings
dc.typeartículo
sipa.indexWOS
sipa.trazabilidadWOS;2025-01-12
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