{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,25]],"date-time":"2026-01-25T02:56:13Z","timestamp":1769309773683,"version":"3.49.0"},"reference-count":13,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2022,10,14]],"date-time":"2022-10-14T00:00:00Z","timestamp":1665705600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J Peripheral Nervous Sys"],"published-print":{"date-parts":[[2022,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Patient\u2010reported outcome measures engage patients in disease severity measurement and the metrics reported can be meaningful to their lives. The Polyneuropathy, Organomegaly, Endocrinopathy, Monoclonal protein and Skin changes syndrome (POEMS) is a complex multisystem disorder with disabling neuropathy which is distinct from other acquired inflammatory neuropathies. No current POEMS\u2010specific validated disability scales exist. To address this, we have produced a Rasch\u2010built overall disability scale (RODS) specific to POEMS. A 146\u2010item preliminary questionnaire containing relevant activity and participation items for neuropathic disability was applied to 49 clinically stable patients with POEMS from the UK national POEMS cohort. A total of 123 items not fulfilling Rasch model expectations were sequentially removed. The final 23\u2010item POEMS\u2010RODS fulfilled Rasch model expectations and showed acceptable test\u2010retest reliability. The 23\u2010item POEMS\u2010RODS is a disease\u2010specific patient\u2010reported outcome measure able to detect activity limitations within the range of ability demonstrated by the UK POEMS cohort. Larger international studies are needed to confirm the broader applicability and responsiveness of this scale in other countries.<\/jats:p>","DOI":"10.1111\/jns.12516","type":"journal-article","created":{"date-parts":[[2022,10,3]],"date-time":"2022-10-03T13:58:36Z","timestamp":1664805516000},"page":"302-310","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Rasch\u2010built overall disability scale for <scp>POEMS<\/scp> syndrome (<scp>POEMS\u2010RODS<\/scp>)"],"prefix":"10.1111","volume":"27","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6434-9496","authenticated-orcid":false,"given":"Ryan Yann Shern","family":"Keh","sequence":"first","affiliation":[{"name":"Queen Square Centre for Neuromuscular Diseases, National Hospital of Neurology and Neurosurgery, Queen Square University College London Hospitals NHS Foundation Trust  London UK"},{"name":"Manchester Centre for Clinical Neurosciences, Salford Royal Hospital Northern Care Alliance NHS Foundation Trust  Manchester UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"James B.","family":"Lilleker","sequence":"additional","affiliation":[{"name":"Manchester Centre for Clinical Neurosciences, Salford Royal Hospital Northern Care Alliance NHS Foundation Trust  Manchester UK"},{"name":"Division of Musculoskeletal and Dermatological Sciences, Manchester Academic Health Sciences Centre University of Manchester  Manchester UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tim","family":"Lavin","sequence":"additional","affiliation":[{"name":"Manchester Centre for Clinical Neurosciences, Salford Royal Hospital Northern Care Alliance NHS Foundation Trust  Manchester UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jonathan","family":"Sive","sequence":"additional","affiliation":[{"name":"Department of Haematology University College London Hospitals NHS Foundation Trust  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Shirley","family":"D'Sa","sequence":"additional","affiliation":[{"name":"Department of Haematology University College London Hospitals NHS Foundation Trust  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Gita","family":"Ramdharry","sequence":"additional","affiliation":[{"name":"Queen Square Centre for Neuromuscular Diseases, National Hospital of Neurology and Neurosurgery, Queen Square University College London Hospitals NHS Foundation Trust  London UK"},{"name":"Institute of Neurology University College London  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Aisling S.","family":"Carr","sequence":"additional","affiliation":[{"name":"Queen Square Centre for Neuromuscular Diseases, National Hospital of Neurology and Neurosurgery, Queen Square University College London Hospitals NHS Foundation Trust  London UK"},{"name":"Institute of Neurology University College London  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3174-6027","authenticated-orcid":false,"given":"Michael P.","family":"Lunn","sequence":"additional","affiliation":[{"name":"Queen Square Centre for Neuromuscular Diseases, National Hospital of Neurology and Neurosurgery, Queen Square University College London Hospitals NHS Foundation Trust  London UK"},{"name":"Institute of Neurology University College London  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2022,10,14]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000009940"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1212\/NXI.0000000000000486"},{"key":"e_1_2_9_4_1","volume-title":"Probabilistic Models for some Intelligence and Attainment Tests","author":"Rasch G","year":"1960"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0b013e318208824b"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/jns.12141"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1097\/WCO.0000000000000610"},{"key":"e_1_2_9_8_1","unstructured":"Rummlab Pty Ltd.RUMM2030+.https:\/\/www.rummlab.com.au\/. 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