{"doi":"10.1007/s40120-024-00704-8","title":"Content Validity of the Friedreich Ataxia Rating Scale in Patients with Spinocerebellar Ataxia","abstract":"INTRODUCTION: The Friedreich Ataxia Rating Scale-Activities of Daily Living (FARS-ADL) is a validated and highly utilized measure for evaluating patients with Friedreich Ataxia. While construct validity of FARS-ADL has been shown for spinocerebellar ataxia (SCA), content validity has not been established. METHODS: Individuals with SCA1 or SCA3 (n = 7) and healthcare professionals (HCPs) with SCA expertise (n = 8) participated in qualitative interviews evaluating the relevance, clarity, and clinical meaningfulness of FARS-ADL for assessment of individuals with SCA. Interviews were recorded, transcribed, coded, and analyzed by ATLAS.Ti v22 software. RESULTS: FARS-ADL concepts most frequently reported by individuals with SCA were difficulty walking (n = 7/7), falls (n = 6/7), speech difficulties (n = 4/7), and swallowing (n = 3/7). Individuals with SCA reported that all FARS-ADL items were relevant; Gait and Walking (n = 7/7), Bladder Function (n = 6/7), and Falling (n = 6/7) were considered extremely relevant. All HCPs (n = 8/8) reported that most FARS-ADL items were relevant to individuals with SCA; Quality of Sitting Position was considered least relevant. HCPs reported meaningful change as 1-2 point score change in individual FARS-ADL items (n = 7/7), 1-3 point change in total score (n = 6/6), and stability on any item and/or total score over ≥ 1 year, depending on SCA subtype (n = 5/8). Cognitive debriefing supported clarity and comprehension of FARS-ADL. Suggested improvements included refining response options for Dressing, Falling, Walking, and Bladder Function items. CONCLUSION: The findings confirm the content validity of most FARS-ADL items for use in individuals with mild-to-moderate SCA1 and SCA3, and offer suggested improvements for response options.","journal":"Neurology and Therapy","year":2025,"id":551169,"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":0.8575,"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":1447324,"name":"K. Rüdell","orcid":null,"position":1,"is_corresponding":false},{"id":313011,"name":"Naomi Suminski","orcid":null,"position":2,"is_corresponding":false},{"id":1028783,"name":"Rinchen Doma","orcid":null,"position":3,"is_corresponding":false},{"id":1447325,"name":"Maggie Heinrich","orcid":null,"position":4,"is_corresponding":false},{"id":1446986,"name":"Linda Abetz‐Webb","orcid":"0000-0001-8096-6160","position":5,"is_corresponding":false},{"id":1447326,"name":"Melissa Beiner","orcid":null,"position":6,"is_corresponding":false},{"id":1447327,"name":"Vlad Coric","orcid":null,"position":7,"is_corresponding":false},{"id":271293,"name":"Liana S. Rosenthal","orcid":"0000-0001-5140-3967","position":8,"is_corresponding":false},{"id":255403,"name":"Sheng‐Han Kuo","orcid":"0000-0002-9412-931X","position":9,"is_corresponding":false},{"id":1235891,"name":"Theresa Zesiewicz","orcid":"0000-0003-0640-1641","position":10,"is_corresponding":false},{"id":1447328,"name":"Terry D. Fife","orcid":null,"position":11,"is_corresponding":false},{"id":657254,"name":"Bart P.C. van de Warrenburg","orcid":"0000-0003-4412-1616","position":12,"is_corresponding":false},{"id":1447329,"name":"Giovanni Ristori","orcid":null,"position":13,"is_corresponding":false},{"id":65630,"name":"Matthis Synofzik","orcid":"0000-0002-2280-7273","position":14,"is_corresponding":false},{"id":523438,"name":"S. H. Subramony","orcid":"0000-0002-8052-9240","position":15,"is_corresponding":false},{"id":346959,"name":"Susan B. Perlman","orcid":"0000-0002-0750-3802","position":16,"is_corresponding":false},{"id":228120,"name":"Jeremy D. Schmahmann","orcid":"0000-0003-0706-5125","position":17,"is_corresponding":false},{"id":1447330,"name":"G. LʼItalien","orcid":null,"position":18,"is_corresponding":false},{"id":671019,"name":"Michele Potashman","orcid":"0000-0001-7389-3354","position":0,"is_corresponding":true}],"reference_count":25,"raw_metadata":null,"created_at":"2026-07-19T02:54:25.065895Z","pmid":"39812736","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":[]}