An international core outcome set for primary progressive aphasia (COS-PPA): Consensus-based recommendations for communication interventions across research and clinical settings.
Обработка статьи · этапы, ошибки и управление
Ошибки и ограничения
История · было → стало
Состояние обновляется каждые 5 секунд, пока блок открыт. Процент показывается только там, где известен объём работы. Пауза останавливает продолжение этапа; текущий запрос к источнику может завершиться.
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 Ávila, Gallée Jeanne, Grasso Stephanie M, Haley Katarina, Hendriksen Heleen, Henderson Shalom, Jiskoot Lize, Almeida Isabel Junqueira, Kindell Jackie, Kingma Rachel, Kwan-Chen Lorinda Ly, Lavoie Monica, Lifshitz-Ben-Basat Adi, Jokel Regina, Mahut-Dubos Aurore, Matias-Guiu Jordi A, Masson-Trottier Michèle, Meinzer Marcus, McGowan Ellen, Mendez-Orellana Carolina, Meyer Aaron M, Millanski Carly, Montagut Núria, 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, Suárez-González 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
Аннотация
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.