Browsing by Author "Volkmer, Anna"

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    An international core outcome set for primary progressive aphasia (COS-PPA): Consensus-based recommendations for communication interventions across research and clinical settings
    (2024) Volkmer, Anna; Alves, Emily Viega; Bar-Zeev, Hagit; Barbieri, Elena; Battista, Petronilla; Beales, Ashleigh; Beber, Barbara Costa; Brotherhood, Emilie; Cadorio, Ines Ribeiro; Carthery-Goulart, Maria Teresa; Cartwright, Jade; Crutch, Sebastian; Croot, Karen; Freitas, Maria Isabel d'Avila; Gallee, Jeanne; Grasso, Stephanie M.; Haley, Katarina; Hendriksen, Heleen; Henderson, Shalom; Jiskoot, Lize; Almeida, Isabel Junqueira; Kindell, Jackie; Kingma, Rachel; Kwan-Chen, Lorinda L. Y.; Lavoie, Monica; Lifshitz-Ben-Basat, Adi; Jokel, Regina; Mahut-Dubos, Aurore; Matias-Guiu, Jordi A.; Masson-Trottier, Michele; Meinzer, Marcus; Mcgowan, Ellen; Mendez-Orellana, Carolina; Meyer, Aaron M.; Millanski, Carly; Montagut, Nuria; Mooney, Aimee; Morhardt, Darby J.; Nickels, Lyndsey; Norvik, Monica; Nowenstein, Iris Edda; Paplikar, Avanthi; Pozzebon, Margaret; Renard, Antoine; Ruggero, Leanne; Rogalski, Emily; Rysop, Anna U.; Sand Aronsson, Fredrik; Suarez-Gonzalez, Aida; Savage, Sharon; Thi, Mai Tran; Tsapkini, Kyriana; Taylor-Rubin, Cathleen; Tippett, Donna C.; Unger, Nina; van Ewijk, Lizet; Wielaert, Sandra; Winsnes, Ingvild Elisabeth; Whitworth, Anne; Yasa, Ibrahim Can; Copland, David; Henry, Maya L.; Warren, Jason D.; Varley, Rosemary; Wallace, Sarah J.; Hardy, Chris J. D.
    INTRODUCTIONInterventions 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.