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, Bárbara Costa Beber, Emilie Brotherhood, Inês Cadório, Maria Teresa Carthery‐Goulart, Jade Cartwright, Sebastian J. Crutch, Karen Croot, Maria Isabel d’Ávila Freitas, Jeanne Gallée, Stephanie M. Grasso, Katarina L. Haley, Heleen Hendriksen, Shalom K Henderson, Lize C. Jiskoot, Isabel Junqueira de Almeida, Jacqueline Kindell, Rachel Kingma, Lorinda LY Kwan‐Chen, Monica Lavoie, Adi Lifshitz‐Ben‐Basat, Regina Jokel, Aurore Mahut‐Dubos, Jordi A. Matías‐Guiu, Michèle Masson‐Trottier, Marcus Meinzer, Ellen McGowan, Carolina Méndez‐Orellana, Aaron M. Meyer, Carly Millanski, Núria Montagut, Aimee Mooney, Darby Morhardt, Lyndsey Nickels, Monica Norvik, Iris Edda Nowenstein, Avanthi Paplikar, Margaret Pozzebon, Antoine Renard, Leanne Ruggero, Emily Rogalskı, Anna U. Rysop, Fredrik Sand Aronsson, Aida Suárez‐González, Sharon Savage, Mai Tran Thi, Kyrana Tsapkini, Cathleen Taylor‐Rubin, Donna Tippett, Nina Unger, Lizet van Ewijk, Sandra Wielaert, Ingvild Elisabeth Winsnes, Anne Whitworth, İbrahim Can YAŞA, David A. Copland, Maya L. Henry, Jason D. Warren, Rosemary Varley, Sarah J. Wallace, Chris JD Hardy
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.