{"@context":{"@vocab":"https://cir.nii.ac.jp/schema/1.0/","rdfs":"http://www.w3.org/2000/01/rdf-schema#","dc":"http://purl.org/dc/elements/1.1/","dcterms":"http://purl.org/dc/terms/","foaf":"http://xmlns.com/foaf/0.1/","prism":"http://prismstandard.org/namespaces/basic/2.0/","cinii":"http://ci.nii.ac.jp/ns/1.0/","datacite":"https://schema.datacite.org/meta/kernel-4/","ndl":"http://ndl.go.jp/dcndl/terms/","jpcoar":"https://github.com/JPCOAR/schema/blob/master/2.0/"},"@id":"https://cir.nii.ac.jp/crid/1362825893766856448.json","@type":"Article","productIdentifier":[{"identifier":{"@type":"DOI","@value":"10.1111/j.1468-1331.2008.02434.x"}},{"identifier":{"@type":"URI","@value":"https://api.wiley.com/onlinelibrary/tdm/v1/articles/10.1111%2Fj.1468-1331.2008.02434.x"}},{"identifier":{"@type":"URI","@value":"https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1468-1331.2008.02434.x"}}],"dc:title":[{"@value":"Measuring function in advanced ALS: validation of ALSFRS‐EX extension items"}],"description":[{"type":"abstract","notation":[{"@value":"<jats:p><jats:bold>Background: </jats:bold> With the aid of assistive technology, some patients with amyotrophic lateral sclerosis (ALS) are able to live for several years past the lowest measurable level of function on the Amyotrophic Lateral Sclerosis Functional Rating Scale – Revised (ALSFRS‐R), a widely used end‐point in ALS assessment. There is a research need to monitor patient function at the end of life, particularly in the face of severe impairment or ‘locked in syndrome’.</jats:p><jats:p><jats:bold>Methods: </jats:bold> We used an online community for people with ALS (PALS) (PatientsLikeMe) to construct and pilot a number of new items to add to the ALSFRS‐R scale to improve its sensitivity at lower levels of physical function in patients with advanced ALS.</jats:p><jats:p><jats:bold>Results: </jats:bold> Ten new scale items were generated by a survey of PALS with advanced disease. These were added to the existing ALSFRS‐R and data was received from 326 PALS as baseline with 271 PALS (83%) completing a 1‐week test‐retest and 218 PALS (67%), completing a 3‐month retest.</jats:p><jats:p><jats:bold>Conclusions: </jats:bold> Three new items were selected which conformed to the existing factor structure of the ALFRS‐R. These relate to the ability to use fingers to manipulate devices, ability to show emotional expression in the face, and ability to get around inside the home. Real‐world validation is the next step to assess the utility of the ALFRS‐EX.</jats:p>"}]}],"creator":[{"@id":"https://cir.nii.ac.jp/crid/1382825893766856449","@type":"Researcher","foaf:name":[{"@value":"P. Wicks"}]},{"@id":"https://cir.nii.ac.jp/crid/1382825893766856450","@type":"Researcher","foaf:name":[{"@value":"M. P. Massagli"}]},{"@id":"https://cir.nii.ac.jp/crid/1382825893766856451","@type":"Researcher","foaf:name":[{"@value":"C. Wolf"}]},{"@id":"https://cir.nii.ac.jp/crid/1382825893766856448","@type":"Researcher","foaf:name":[{"@value":"J. Heywood"}]}],"publication":{"publicationIdentifier":[{"@type":"PISSN","@value":"13515101"},{"@type":"EISSN","@value":"14681331"}],"prism:publicationName":[{"@value":"European Journal of Neurology"}],"dc:publisher":[{"@value":"Wiley"}],"prism:publicationDate":"2009-02-05","prism:volume":"16","prism:number":"3","prism:startingPage":"353","prism:endingPage":"359"},"reviewed":"false","dc:rights":["http://onlinelibrary.wiley.com/termsAndConditions#vor"],"url":[{"@id":"https://api.wiley.com/onlinelibrary/tdm/v1/articles/10.1111%2Fj.1468-1331.2008.02434.x"},{"@id":"https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1468-1331.2008.02434.x"}],"createdAt":"2009-01-15","modifiedAt":"2023-10-15","relatedProduct":[{"@id":"https://cir.nii.ac.jp/crid/1360004230234266368","@type":"Article","resourceType":"学術雑誌論文(journal article)","relationType":["isReferencedBy"],"jpcoar:relatedTitle":[{"@value":"Macroglossia in advanced amyotrophic lateral sclerosis"}]},{"@id":"https://cir.nii.ac.jp/crid/1360285714197081984","@type":"Article","resourceType":"学術雑誌論文(journal article)","relationType":["isReferencedBy"],"jpcoar:relatedTitle":[{"@value":"Predictors of impaired communication in amyotrophic lateral sclerosis patients with tracheostomy-invasive ventilation"}]},{"@id":"https://cir.nii.ac.jp/crid/1390282680014243584","@type":"Article","resourceType":"学術雑誌論文(journal article)","relationType":["isReferencedBy"],"jpcoar:relatedTitle":[{"@language":"en","@value":"Communication disorder in amyotrophic lateral sclerosis after ventilation—A proposal of staging and a study of predictive factor—"},{"@language":"ja","@value":"侵襲的陽圧補助換気導入後の筋萎縮性側索硬化症における意思伝達能力障害―Stage 分類の提唱と予後予測 因子の検討―"},{"@language":"ja-Kana","@value":"シンシュウテキ ヨウアツ ホジョ カンキ ドウニュウ ゴ ノ キン イシュクセイ ソクサク コウカショウ ニ オケル イシ デンタツ ノウリョク ショウガイ : Stage ブンルイ ノ テイショウ ト ヨゴ ヨソク インシ ノ ケントウ"},{"@value":"Communication disorder in amyotrophic lateral sclerosis after ventilation-a proposal of staging and a study of predictive factor"},{"@value":"Communication disorder in amyotrophic lateral sclerosis after ventilation—a proposal of staging and a study of predictive factor"}]}],"dataSourceIdentifier":[{"@type":"CROSSREF","@value":"10.1111/j.1468-1331.2008.02434.x"},{"@type":"CROSSREF","@value":"10.1002/mus.25058_references_DOI_ZhLfBGiTPczj6gEuBSFojFeFNlP"},{"@type":"CROSSREF","@value":"10.3109/21678421.2015.1055276_references_DOI_ZhLfBGiTPczj6gEuBSFojFeFNlP"},{"@type":"CROSSREF","@value":"10.5692/clinicalneurol.53.98_references_DOI_ZhLfBGiTPczj6gEuBSFojFeFNlP"}]}