{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,18]],"date-time":"2026-06-18T21:52:06Z","timestamp":1781819526397,"version":"3.54.5"},"reference-count":0,"publisher":"Oxford University Press (OUP)","license":[{"start":{"date-parts":[[2026,6,18]],"date-time":"2026-06-18T00:00:00Z","timestamp":1781740800000},"content-version":"am","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/pages\/standard-publication-reuse-rights"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>Despite improved survival in recent years, long-term outcomes in patients surviving progressive multifocal leukoencephalopathy beyond the first year remain poorly defined. This international multicenter retrospective study aimed to characterize the three-year prognosis of patients with progressive multifocal leukoencephalopathy who had survived at least one year, identify factors associated with favorable outcomes and late mortality, and determine recurrence rate.<\/jats:p>\n                  <jats:p>Data were collected through standardized questionnaires across forty-one centers in twelve countries. Patients were eligible if they met the 2013 diagnostic criteria for definite progressive multifocal leukoencephalopathy of the American Academy of Neurology, survived at least one year after diagnosis, and had documented follow-up three years after diagnosis. Demographic, clinical, virological, and radiological data were retrieved at diagnosis, one year, and three years. Functional status was assessed using the modified Rankin Scale, with scores of 0-2 defining a favorable outcome. Generalized linear mixed models identified independent predictors of three-year functional status and late mortality.<\/jats:p>\n                  <jats:p>Among 1877 screened cases, 245 patients met inclusion criteria. The most common underlying causes of immunosuppression were HIV infection (48%), autoimmune\/inflammatory diseases (26%), and hematological malignancies (18%). At three years, 220 patients (89.8% of the cohort) were alive and 188 (85.5% of survivors) had neurological sequelae, most frequently motor or cognitive impairment. Overall, 112\/245 (45.7%) achieved a favorable functional outcome. HIV-associated progressive multifocal leukoencephalopathy (OR 2.36, 95% CI 1.05-5.28) was associated with a favourable outcome, whereas higher modified Rankin Scale score at diagnosis (OR 0.48, 95% CI 0.35-0.66) and higher number of affected brain regions on baseline MRI (OR 0.78, 95% CI 0.64-0.95) were independently associated with poorer functional outcome. Among variables collected one year after diagnosis, good functional status at that time was significantly associated with long-term favorable outcome (OR 0.01, 95% CI &amp;lt;0.01-0.03). Twenty-five patients (10.2%) died after the first year, with mortality associated with higher lesion burden at diagnosis and primary immunodeficiency as underlying disease. Even beyond the first year, progressive multifocal leukoencephalopathy remained the leading cause of death (11\/25). Recurrence occurred in seven patients (2.9%) and was almost always fatal (6\/7).<\/jats:p>\n                  <jats:p>This study provides a comprehensive evaluation of long-term outcomes among survivors of progressive multifocal leukoencephalopathy. These findings present a nuanced picture: while most remain neurologically impaired, nearly half achieve functional independence at three years. The results emphasize the prognostic relevance of the initial clinical and radiological burden and early functional trajectory and highlight the need for research into mechanisms driving disease recurrence.<\/jats:p>","DOI":"10.1093\/brain\/awag213","type":"journal-article","created":{"date-parts":[[2026,6,16]],"date-time":"2026-06-16T16:36:24Z","timestamp":1781627784000},"source":"Crossref","is-referenced-by-count":0,"title":["Long-term prognosis of patients surviving progressive multifocal leukoencephalopathy"],"prefix":"10.1093","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6660-0100","authenticated-orcid":false,"given":"Nicolas","family":"Lambert","sequence":"first","affiliation":[{"name":"Experimental Immunotherapeutics Unit, National Institute of Neurological Disorders and Stroke, National Institutes of Health , Bethesda, MD 20892 ,","place":["USA"]},{"name":"Department of Neurology, CHU de Li\u00e8ge\/H\u00f4pital de la Citadelle , 4000 Li\u00e8ge ,","place":["Belgium"]},{"name":"ESCMID Study Group for Infectious Diseases of the Brain (ESGIB) , 4051 Basel ,","place":["Switzerland"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Majdouline","family":"El Moussaoui","sequence":"additional","affiliation":[{"name":"Department of Clinical Immunology and Internal Medicine, University Hospital of Li\u00e8ge , 4000 Li\u00e8ge ,","place":["Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ad\u00e8le","family":"Le Guilloux","sequence":"additional","affiliation":[{"name":"Methodology, Data Management and Statistical Analysis Unit, Centre of Clinical Investigation 1436, Department of Medical and Clinical Pharmacology, Toulouse University Hospital, Toulouse University , 31300 Toulouse ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0191-2584","authenticated-orcid":false,"given":"Marine","family":"Joly","sequence":"additional","affiliation":[{"name":"Department of Infectious Diseases, Toulouse University Hospital, Toulouse University , 31300 Toulouse ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0002-2885-2283","authenticated-orcid":false,"given":"Maria","family":"del Carmen Garcia Martearena","sequence":"additional","affiliation":[{"name":"Unit of Infectious Diseases, IRCCS San Raffaele Scientific Institute , 20132 Milan ,","place":["Italy"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ilaria","family":"Mainardi","sequence":"additional","affiliation":[{"name":"Unit of Infectious Diseases, IRCCS San Raffaele Scientific Institute , 20132 Milan ,","place":["Italy"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7447-344X","authenticated-orcid":false,"given":"Raphael","family":"Bernard-Valnet","sequence":"additional","affiliation":[{"name":"Service of Neurology, Department of Clinical Neurosciences, Lausanne University Hospital (CHUV) and Lausanne University (UNIL) , 1005 Lausanne ,","place":["Switzerland"]},{"name":": Department of Neurology and Medical Faculty, University Hospital M\u00fcnster (UKM) , 48149 M\u00fcnster ,","place":["Germany"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carmela","family":"Pinnetti","sequence":"additional","affiliation":[{"name":"Clinical and Research Infectious Diseases Department, National Institute for Infectious Diseases \u201cL. Spallanzani\u201d \u2013 IRCCS , 00149 Rome ,","place":["Italy"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2121-4684","authenticated-orcid":false,"given":"Andrea","family":"Antinori","sequence":"additional","affiliation":[{"name":"Clinical and Research Infectious Diseases Department, National Institute for Infectious Diseases \u201cL. Spallanzani\u201d \u2013 IRCCS , 00149 Rome ,","place":["Italy"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Annalisa","family":"Mondi","sequence":"additional","affiliation":[{"name":"Clinical and Research Infectious Diseases Department, National Institute for Infectious Diseases \u201cL. Spallanzani\u201d \u2013 IRCCS , 00149 Rome ,","place":["Italy"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kirsten Felicity","family":"Greve","sequence":"additional","affiliation":[{"name":"Department of Infectious Diseases, Aalborg University Hospital , 9260 Gistrup ,","place":["Denmark"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Xavier","family":"Brousse","sequence":"additional","affiliation":[{"name":"Infectious Diseases Unit, University Hospital of Bordeaux , 33000 Bordeaux ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Willeke F","family":"Westendorp","sequence":"additional","affiliation":[{"name":"Department of Neurology, Amsterdam University Medical Centers , 1105 Amsterdam ,","place":["The Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martijn T","family":"Wijburg","sequence":"additional","affiliation":[{"name":"Department of Neurology, Amsterdam University Medical Centers , 1105 Amsterdam ,","place":["The Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lea","family":"Grote-Levi","sequence":"additional","affiliation":[{"name":"Department of Neurology, Medizinische Hochschule Hannover (MHH) , 30625 Hannover ,","place":["Germany"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nora","family":"M\u00f6hn","sequence":"additional","affiliation":[{"name":"Department of Neurology, Medizinische Hochschule Hannover (MHH) , 30625 Hannover ,","place":["Germany"]},{"name":"Center of Neurology, Department of Neuroimmunology, University Hospital Bonn , 53127 Bonn ,","place":["Germany"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Val\u00e9rie","family":"Pourcher","sequence":"additional","affiliation":[{"name":"Department of Infectious Diseases, Sorbonne University, Assistance Publique-H\u00f4pitaux de Paris (AP-HP), Piti\u00e9-Salp\u00eatri\u00e8re Hospital , 75013 Paris 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,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Agni M","family":"Konitsioti","sequence":"additional","affiliation":[{"name":"Department of Neurology, University of Cologne, Faculty of Medicine and University Hospital Cologne , 50937 Cologne ,","place":["Germany"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Baptiste","family":"Hoellinger","sequence":"additional","affiliation":[{"name":"Department of Infectious and Tropical Diseases, Strasbourg University Hospitals , 67000 Strasbourg ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Louisa","family":"Nitsch","sequence":"additional","affiliation":[{"name":"Center of Neurology, Department of Neuroimmunology, University Hospital Bonn , 53127 Bonn ,","place":["Germany"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Douglas E","family":"Ney","sequence":"additional","affiliation":[{"name":"Departments of Neurology and Neurosurgery, University of Colorado School of Medicine , Aurora, CO 80045 ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2787-0885","authenticated-orcid":false,"given":"Emmanuel","family":"Faure","sequence":"additional","affiliation":[{"name":"Department of Infectious Diseases, Centre Hospitalier Universitaire de Lille , 59000 Lille ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karl Bj\u00f8rnar","family":"Alstadhaug","sequence":"additional","affiliation":[{"name":"Department of Neurology, Nordland hospital in Bod\u00f8 , 8005 Bod\u00f8 ,","place":["Norway"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4524-9064","authenticated-orcid":false,"given":"Martin","family":"Martinot","sequence":"additional","affiliation":[{"name":"Infectious Diseases Department, H\u00f4pitaux Civils , 68000 Colmar 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,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tom","family":"Cartau","sequence":"additional","affiliation":[{"name":"Infectious Diseases Department, CHU de Caen , 14000 Caen ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fr\u00e9d\u00e9ric","family":"London","sequence":"additional","affiliation":[{"name":"CHU UCL Namur site Godinne , 5530 Yvoir ,","place":["Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andr\u00e9","family":"Cabi\u00e9","sequence":"additional","affiliation":[{"name":"Department of Infectious and Tropical Diseases, Martinique University Hospital , Fort-de-France, 97261 Martinique"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2177-4318","authenticated-orcid":false,"given":"K\u00e9vin","family":"Bouiller","sequence":"additional","affiliation":[{"name":"Universit\u00e9 Marie et Louis Pasteur, CHU Besan\u00e7on, UMR-CNRS 6249 Chrono-environnement, Department of infectious and tropical diseases , 25030 Besan\u00e7on ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alexis","family":"Montcuquet","sequence":"additional","affiliation":[{"name":"Neurology Department, University Hospital of Limoges , 87000 Limoges ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1218-9432","authenticated-orcid":false,"given":"Paul","family":"Loubet","sequence":"additional","affiliation":[{"name":"Department of Infectious Diseases, Centre Hospitalier Universitaire de N\u00eemes , 30900 N\u00eemes ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0000-5228-2028","authenticated-orcid":false,"given":"Naomi","family":"Sayre","sequence":"additional","affiliation":[{"name":"Department of Infectious and Tropical Diseases, Saint-Denis Hospital Center, Delafontaine Hospital , 93200 Saint-Denis ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0063-325X","authenticated-orcid":false,"given":"Marion","family":"Le Marechal","sequence":"additional","affiliation":[{"name":"ESCMID Study Group for Infectious Diseases of the Brain (ESGIB) , 4051 Basel ,","place":["Switzerland"]},{"name":"Infectious Disease Unit, Grenoble-Alpes University Hospital , 38700 Grenoble ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David B","family":"Clifford","sequence":"additional","affiliation":[{"name":"Department of Neurology, Washington University in St. Louis , St. Louis, MO 63110 ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8550-335X","authenticated-orcid":false,"given":"Thomas","family":"Skripuletz","sequence":"additional","affiliation":[{"name":"Department of Neurology, Medizinische Hochschule 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University Hospital , 31300 Toulouse 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