{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,13]],"date-time":"2026-01-13T08:16:59Z","timestamp":1768292219941,"version":"3.49.0"},"reference-count":26,"publisher":"Springer Science and Business Media LLC","issue":"12","license":[{"start":{"date-parts":[[2025,8,31]],"date-time":"2025-08-31T00:00:00Z","timestamp":1756598400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2025,8,31]],"date-time":"2025-08-31T00:00:00Z","timestamp":1756598400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100001779","name":"Monash University","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100001779","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Qual Life Res"],"published-print":{"date-parts":[[2025,12]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Patients with Autoimmune Encephalitis (AE) commonly report poor quality of life. There is a lack of evidence on whether clinician-rated outcome measures adequately capture patient-reported experiences. This study aimed to characterise long-term quality of life in AE patients and examine its relationship with clinician-rated disability (modified Rankin Score, mRS) and symptom severity (Clinical Assessment Scale in Autoimmune Encephalitis, CASE).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Patients with AE were recruited through the Australian Autoimmune Encephalitis Consortium Project. Patients with completed NeuroQoL instruments, as well as CASE and\/or mRS scores within 6 months of the NeuroQoL were included.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Fifty-four patients with AE (50% female, median age at symptom onset\u2009=\u200949.70 years) completed the NeuroQoL instruments at a median of 50 months (IQR: 18.25\u201387.50 months) post-disease onset. The median CASE score was 2 (IQR: 0.0\u20133.0). The median mRS was 1.5 (IQR: 1.0\u20132.0). In the total AE sample, CASE scores were positively associated with all NeuroQoL domains (\n                      <jats:italic>r<\/jats:italic>\n                      \u2009=\u2009.42\u2212.53), except Fatigue (\n                      <jats:italic>r<\/jats:italic>\n                      \u2009=\u2009.28). Total NeuroQoL, Cognitive Function, Satisfaction in Social Roles and Activities, and Stigma T-scores were significantly higher in seropositive AE patients with an mRS\u2009&gt;\u20092 (\n                      <jats:italic>d<\/jats:italic>\n                      \u2009=\u20090.94\u20131.66). The mRS significantly predicted most NeuroQoL domains in the total AE sample, and the CASE score explained little or no additional variance over and above mRS scores. Similarly, the CASE score was significantly associated with most NeuroQoL domains, with no additional variance explained by mRS scores.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>The relationships between clinician-rated outcomes and domains of quality of life varied from weak to moderate. This highlights the importance of integrating clinical measures and patient-reported outcomes when assessing outcomes post-AE.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1007\/s11136-025-04052-4","type":"journal-article","created":{"date-parts":[[2025,8,31]],"date-time":"2025-08-31T07:19:29Z","timestamp":1756624769000},"page":"3635-3648","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["The relationship between patient-reported quality of life and clinician-rated outcome scores in patients with autoimmune encephalitis: a study of the Australian Autoimmune Encephalitis 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Tan has received travel support from Biogen; Katherine Y. Ko has no competing interests to declare; Liora ter Horst has no competing interests to declare; Genevieve Skinner has no competing interests to declare; Laurie McLaughlin has no competing interests to declare; Hannah Ford has no competing interests to declare; Catherine Meade has no competing interests to declare; Marie O\u2019Shea has no competing interests to declare; Katherine Buzzard has no competing interests to declare; Mirasol Forcadela has no competing interests to declare; Andrew Duncan has no competing interests to declare; Anneke Van Der Walt has received travel support and served on advisory boards for Novartis, Biogen, Merck and Roche, and she receives grant support from MS Australia and the NHMRC; Wendyl D\u2019Souza\u2019s salary is part-funded by The University of Melbourne. He has received travel, investigator-initiated, scientific advisory board and speaker honoraria from UCB Pharma Australia & Global, investigator-initiated, scientific advisory board, travel and speaker honoraria from Eisai Australia & Global, advisory board honoraria from Liva Nova and Tilray, educational grants from Novartis Pharmaceuticals, Pfizer Pharmaceuticals and Sanofi-Synthelabo, educational, travel and fellowship grants from GSK Neurology Australia, and honoraria from SciGen Pharmaceuticals, a travel grant from Liva Nova, and he has an equity interest in the device company EpiMinder; Udaya Seneviratne has received royalties from Taylor & Francis Publishers for a book publication; Richard Macdonell or his institution have received remuneration for speaking engagements, advisory board memberships, research and travel from Biogen, Merck, Sanofi-Genzyme, Bayer, Roche, Teva, Novartis, CSL, BMS, MedDay and NHMRC; Sudarshini Ramanathan as received research funding from the National Health and Medical Research Council (NHMRC, Australia), the Petre Foundation, the Brain Foundation, the Royal Australasian College of Physicians, and the University of Sydney, and she is supported by an NHMRC Investigator Grant (GNT2008339), and she serves as a consultant on an advisory board for UCB and Limbic Neurology, has been an invited speaker for educational\/research sessions coordinated by Biogen, Alexion, UCB, Novartis, Excemed and Limbic Neurology, and she is on the medical advisory board (non-remunerated positions) of The MOG Project and the Sumaira Foundation; Stefan Blum\u2019s institutions have received remuneration for speaking engagement, research project support and advisory board memberships from Alexion, argenx, Biogen, CSL, Merck, Novartis, Roche and Sanofi-Genzyme; Stephen W. Reddel has received travel support, honoraria, trial payments, research and clinical support to the neurology department or academic projects of which I am a member from bodies and charities including NHMRC, MRFF, NBA, Myasthenia Alliance Australia, Beeren Foundation; and from pharmaceutical\/biological companies: Alexion, Argenx, Biogen, CSL, Genzyme, Grifols, Jannsen, Merck, Novartis, Roche, Sandoz, Sanofi, UCB over the past five years; Todd A. Hardy has received speaker honoraria, conference support and Scientific Advisory Board fees from Bayer-Schering, Bristol Myers Squibb, Biogen-Idec, Merck, Novartis, Roche, Sanofi-Genzyme, UCB, Alexion and Teva, and he has received research funding from the National Health and Medical Research Council Medical Research Future Fund, Multiple Sclerosis Australia, Brain Foundation Australia and Brain Australia; Helmut Butzkueven has received travel support from Merck and Novartis, and his institutions (Monash University, MSBase Foundation) received compensation for consulting, talks, advisory\/steering board activities from Biogen, Merck, Novartis, Genzyme, Alfred Health; and research support from Novartis, Biogen, Roche, Merck, NHMRC, Pennycook Foundation, Trish MS Foundation and MSAustralia; Terence J. O\u2019Brien has received research funding from Eisai, UCB Pharma, LivaNova, ES Therapeutics and Kinoxis Therapeutics, and he has also received competitive grant funding from the NHMRC, MRFF, NINDS and the DoD; Rubina Alpitsis has no competing interests to declare; Charles B. Malpas has received conference travel support and\/or speaker fees from Merck, Novartis, and Biogen, and he has received research support from the National Health and Medical Research Council, Multiple Sclerosis Research Australia, The University of Melbourne, The Royal Melbourne Hospital Neuroscience Foundation, and Dementia Australia; Mastura Monif has received speaker honoraria from Merck, Biogen and Novartis, and her institution receives funding from Australian National Health Medical Research Council.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}]}}