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

description: <p>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&nbsp;=&nbsp;82) and care partners (n&nbsp;=&nbsp;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.</p>