{"doi":"10.1016/j.msard.2025.106697","title":"Gaps and discordance in assessment of PIRA identified between HCPs and people with MS: Results of international surveys","abstract":"OBJECTIVES: Progression independent of relapse activity (PIRA) is a major contributor to long-term disability accumulation in multiple sclerosis (MS). This study aimed to explore the assessment of PIRA in clinical practice from the perspectives of people living with MS (pwMS) and healthcare providers (HCPs). METHODS: Cross-sectional surveys were conducted among 310 pwMS and 360 HCPs involved in MS care across seven countries in North America and Europe. RESULTS: HCPs proved to be more motor-focused, primarily through neurological examination and EDSS (75 %), whereas pwMS reported fatigue as the domain most affected (67 %), which was the least assessed domain by HCPs (31 %). 54-61 % of pwMS indicated that the thoroughness, average time spent, and frequency of PIRA assessment had remained the same since diagnosis. As reported by HCPs, roughly 40 % of PIRA assessment remained the same in pwMS with even moderate-severe disability, likely due to time constraints, considered the most limiting factor to measuring PIRA, as well as the lack of a comprehensive, standardized approach and sensitive tools to measure disability as reported by HCPs accurately. CONCLUSION: MS care necessitates a standardized and time-sensitive approach for assessing disability in the absence of relapse, to optimize care and enhance routine disability assessment and monitoring.","journal":"Multiple Sclerosis and Related Disorders","year":2025,"id":546173,"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":1,"citer_count":0,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":false,"is_dataset_confidence":0.8996,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2025-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":497084,"name":"Gavin Giovannoni","orcid":"0000-0001-9995-1700","position":1,"is_corresponding":false},{"id":281953,"name":"Kerstin Hellwig","orcid":"0000-0003-4467-9011","position":2,"is_corresponding":false},{"id":1438304,"name":"Martyna Dackiewicz","orcid":null,"position":3,"is_corresponding":false},{"id":1438305,"name":"Gareth Turley","orcid":null,"position":4,"is_corresponding":false},{"id":347731,"name":"Jiwon Oh","orcid":"0000-0001-5519-6088","position":5,"is_corresponding":false},{"id":226912,"name":"Benjamin Greenberg","orcid":"0000-0002-2091-8201","position":0,"is_corresponding":true}],"reference_count":17,"raw_metadata":null,"created_at":"2026-07-19T02:53:32.285899Z","pmid":"40845602","pmcid":null,"fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":null,"license":null,"views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":null,"fair_a":null,"fair_i":null,"fair_r":null,"fair_zscore":null,"fair_rationale":null,"fair_model":null,"fair_agent_version":null,"fair_fulltext_source":null,"fair_has_llm":null,"fair_computed_at":null,"clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}