{"doi":"10.1002/alz.14362","title":"An international core outcome set for primary progressive aphasia (COS‐PPA): Consensus‐based recommendations for communication interventions across research and clinical settings","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.","journal":"Alzheimer s & Dementia","year":2024,"id":431799,"datarank":0.0,"base_score":0.0,"endowment":0.0,"self_citation_contribution":0.0,"citation_network_contribution":0.0,"self_endowment_contribution":0.0,"citer_contribution":0.0,"corpus_percentile":null,"corpus_rank":null,"citation_count":16,"citer_count":0,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":false,"is_dataset_confidence":0.5047,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2024-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":1236055,"name":"Emily Viega Alves","orcid":"0000-0003-4800-3908","position":1,"is_corresponding":false},{"id":1236463,"name":"Hagit Bar‐Zeev","orcid":null,"position":2,"is_corresponding":false},{"id":351165,"name":"Elena Barbieri","orcid":"0000-0002-7303-846X","position":3,"is_corresponding":false},{"id":1058634,"name":"Petronilla Battista","orcid":"0000-0002-3120-1214","position":4,"is_corresponding":false},{"id":1236056,"name":"Ashleigh Beales","orcid":"0000-0002-5560-0754","position":5,"is_corresponding":false},{"id":262257,"name":"Bárbara Costa Beber","orcid":"0000-0003-1781-3625","position":6,"is_corresponding":false},{"id":1030491,"name":"Emilie Brotherhood","orcid":"0000-0002-6244-7735","position":7,"is_corresponding":false},{"id":1236057,"name":"Inês Cadório","orcid":"0000-0002-6142-2341","position":8,"is_corresponding":false},{"id":1236058,"name":"Maria Teresa Carthery‐Goulart","orcid":"0000-0002-2751-4541","position":9,"is_corresponding":false},{"id":1236059,"name":"Jade Cartwright","orcid":"0000-0002-6381-6184","position":10,"is_corresponding":false},{"id":1030498,"name":"Sebastian J. 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