{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,11]],"date-time":"2026-10-11T12:33:57Z","timestamp":1791722037820,"version":"4.3.4"},"reference-count":18,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2025,6,4]],"date-time":"2025-06-04T00:00:00Z","timestamp":1748995200000},"content-version":"vor","delay-in-days":3,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100008486","name":"Schweizerische Multiple Sklerose Gesellschaft","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100008486","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Euro J of Neurology"],"published-print":{"date-parts":[[2025,6]]},"abstract":"<jats:title>ABSTRACT<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Monitoring multiple sclerosis (MS) progression traditionally relies on clinical measures, which may overlook symptoms affecting quality of life. Incorporating patient\u2010reported outcomes could improve the understanding of disease worsening.<\/jats:p><\/jats:sec><jats:sec><jats:title>Objective<\/jats:title><jats:p>To evaluate an EQ\u20105D\u2010based algorithm for detecting disease worsening and compare it with EDSS worsening.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>We analyzed longitudinal EQ\u20105D and EDSS data from the Swiss MS Registry. EQ\u20105D worsening was defined as a sustained decline over two assessments; EDSS worsening followed established clinical criteria. Time to confirmed worsening was assessed using Kaplan\u2013Meier curves and Cox regression. Patterns in 12 self\u2010reported symptoms were examined using descriptive statistics and logistic regression.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>By year four, 4.5% experienced EQ\u20105D worsening, while 15.8% experienced EDSS worsening. Faster time to EQ\u20105D worsening was associated with walking aids or higher BMI at baseline. Conversely, faster time to EDSS worsening was associated with male sex, progressive MS, or spasms as the first symptom. Symptom frequency was higher in the EQ\u20105D worsening group, with pain and depression independently associated, while no symptoms were associated with EDSS worsening.<\/jats:p><\/jats:sec><jats:sec><jats:title>Discussion<\/jats:title><jats:p>While EQ\u20105D worsening does not serve as an early clinical marker of disease progression, it may complement EDSS by capturing additional aspects of disease progression, particularly symptoms impacting HRQoL, that are not reflected in EDSS progression. Long\u2010term HRQoL monitoring alongside traditional measures may improve MS progression assessment and patient\u2010centered care.<\/jats:p><\/jats:sec>","DOI":"10.1111\/ene.70230","type":"journal-article","created":{"date-parts":[[2025,6,5]],"date-time":"2025-06-05T04:45:09Z","timestamp":1749098709000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Confirmed Worsening of Health\u2010Related Quality of Life to Monitor Long\u2010Term <scp>MS<\/scp> Disease Progression: A Longitudinal Analysis From the Swiss Multiple Sclerosis Registry"],"prefix":"10.1111","volume":"32","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5808-9026","authenticated-orcid":false,"given":"Stefania","family":"Iaquinto","sequence":"first","affiliation":[{"name":"Department of Epidemiology, Epidemiology, Biostatistics and Prevention Institute University of Zurich  Zurich Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Benjamin Victor","family":"Ineichen","sequence":"additional","affiliation":[{"name":"Department of Clinical Research University of Bern  Bern Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6477-7164","authenticated-orcid":false,"given":"Mina","family":"Staniki\u0107","sequence":"additional","affiliation":[{"name":"Department of Epidemiology, Epidemiology, Biostatistics and Prevention Institute University of Zurich  Zurich Switzerland"},{"name":"Institute for Implementation Science in Health Care University of Zurich  Zurich Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jens","family":"Kuhle","sequence":"additional","affiliation":[{"name":"Department of Neurology University Hospital Basel and University of Basel  Basel Switzerland"},{"name":"Neurology Clinic and Policlinic, Department of Head, Spine and Neuromedicine, MS Center and Research Center for Clinical Neuroimmunology and Neuroscience Basel (RC2NB), Clinical Research and Biomedical Engineering University Hospital Basel and University of Basel  Basel Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christian Philipp","family":"Kamm","sequence":"additional","affiliation":[{"name":"Department of Neurology, Inselspital University Hospital Bern and University of Bern  Bern Switzerland"},{"name":"Neurology and Neurorehabilitation Center Lucerne Cantonal Hospital  Lucerne Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Pasquale","family":"Calabrese","sequence":"additional","affiliation":[{"name":"Neuropsychology and Behavioral Neurology Unit, Division of Cognitive and Molecular Neuroscience University of Basel  Basel Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Patrick","family":"Roth","sequence":"additional","affiliation":[{"name":"Department of Neurology University Hospital Zurich  Zurich Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claudia","family":"Baum","sequence":"additional","affiliation":[{"name":"Rehabilitation Clinic Zihlschlacht  Zihlschlacht Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9990-3431","authenticated-orcid":false,"given":"Chiara","family":"Zecca","sequence":"additional","affiliation":[{"name":"Department of Neurology Neurocenter of Southern Switzerland, Ospedale Regionale di Lugano, EOC  Lugano Switzerland"},{"name":"Faculty of Biomedical Sciences Universit\u00e0 della Svizzera Italiana  Lugano Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7554-0664","authenticated-orcid":false,"given":"Claudio","family":"Gobbi","sequence":"additional","affiliation":[{"name":"Department of Neurology Neurocenter of Southern Switzerland, Ospedale Regionale di Lugano, EOC  Lugano Switzerland"},{"name":"Faculty of Biomedical Sciences Universit\u00e0 della Svizzera Italiana  Lugano Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0800-4845","authenticated-orcid":false,"given":"\u00d6zg\u00fcr","family":"Yaldizli","sequence":"additional","affiliation":[{"name":"Neurology Clinic and Policlinic, Department of Head, Spine and Neuromedicine, MS Center and Research Center for Clinical Neuroimmunology and Neuroscience Basel (RC2NB), Clinical Research and Biomedical Engineering University Hospital Basel and University of Basel  Basel Switzerland"},{"name":"Translational Imaging in Neurology (ThINK) Basel, Department of Biomedical Engineering University Hospital Basel and University of Basel  Basel Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Milo Alan","family":"Puhan","sequence":"additional","affiliation":[{"name":"Department of Epidemiology, Epidemiology, Biostatistics and Prevention Institute University of Zurich  Zurich Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Viktor","family":"von Wyl","sequence":"additional","affiliation":[{"name":"Department of Epidemiology, Epidemiology, Biostatistics and Prevention Institute University of Zurich  Zurich Switzerland"},{"name":"Institute for Implementation Science in Health Care University of Zurich  Zurich Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"the Swiss Multiple Sclerosis 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