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Characterization of Disease Severity and Stability in NMOSD: A Global Clinical Record Review with Patient Interviews

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机构: [1]Neurology Department, "S. Croce e Carle" Hospital, Cuneo, Italy. [2]Department of Neurology, Medical Faculty, Heinrich-Heine-University Du¨sseldorf, Du¨sseldorf, Germany [3]Department of Neurology, Center for Neurology and Neuropsychiatry, LVR-Klinikum, Heinrich- Heine-University Du¨sseldorf, Du¨sseldorf, Germany [4]Blueprint Partnership, Manchester, UK. [5]ApotheCom, London, UK. [6]Siegel Rare Neuroimmune Association, Columbus, OH, USA. [7]Federal University of Minas Gerais Medical School, Belo Horizonte, Brazil. [8]Beijing Tongren Hospital, Capital Medical University, Beijing, China. [9]Department of Neurology, Samsung Medical Center, Sungkyunkwan University School of Medicine, Seoul, South Korea. [10]Department of Neurology, Mayo Clinic, Scottsdale, AZ, USA.
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关键词: Clinical practice Disease characteristics Disease stability Medical care Neuromyelitis optica spectrum disorder Optic neuritis Real-world evidence Relapse Relapse severity Transverse myelitis

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We sought insights into the classification of and factors associated with relapse severity and disease stability in neuromyelitis optica spectrum disorder (NMOSD) clinical practice worldwide.Neurologists recruited from six countries (the USA, Germany, Italy, Brazil, South Korea, and China) participated in a 30-60 minute online survey and submitted two to four clinical records for aquaporin-4-immunoglobulin G (AQP4-IgG)-seropositive adults with NMOSD, which included patient demographics, diagnosis, maintenance treatment history, relapse occurrence, and severity. Separately, patients with NMOSD receiving maintenance therapy were interviewed over the telephone about their treatment journey, as well as perceptions of relapse severity and disease stability, and their potential influence on treatment decisions.Clinical records for 1185 patients with AQP4-IgG-seropositive NMOSD were provided by 389 neurologists (July-August 2020); 33 patients were interviewed (October-November 2020). There was no clear consensus on how relapse severity was defined in clinical practice, with geographical variations in relapse classification also found. Neurologists tended to rely on clinical assessments when determining severity, viewing each relapse in isolation, whereas patients had a more subjective view based on the changes in their daily lives and comparisons with prior relapses. Similarly, there was a disconnect in the definition of disease stability: the complete absence of relapses was more important for patients than for neurologists.A clear consensus on how to assess relapse severity and disease stability is needed to ensure that patients receive appropriate and timely treatment. In the future, clinical measures should be combined with patient-focused assessments.© 2023. The Author(s).

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出版当年[2022]版:
大类 | 3 区 医学
小类 | 3 区 临床神经病学
最新[2023]版:
大类 | 3 区 医学
小类 | 3 区 临床神经病学
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Q2 CLINICAL NEUROLOGY
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Q1 CLINICAL NEUROLOGY

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第一作者机构: [1]Neurology Department, "S. Croce e Carle" Hospital, Cuneo, Italy.
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