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A study of referral bias in NMOSD and MOGAD cohorts

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单位： [1]Serviço de Neurologia, Departamento de Neurociˆencias e Saúde Mental, Hospital Santa Maria, Centro Hospitalar Universit´ario Lisboa Norte, Lisbon, Portugal [2]Nuffield Department of Clinical Neurosciences, John Radcliffe Hospital, University of Oxford, Level 3, West Wing, Headley Way, Oxford OX3 9DU, UK [3]Department of Neurology, Tongji Hospital of Tongji Medical College, Huazhong University of Science of Technology, Wuhan, China [4]Eye Department, King’s College Hospital, London, UK [5]University Hospitals Sussex, Sussex, UK [6]Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK [7]University Hospitals Southampton, Southampton, UK [8]Gloucestershire Royal Hospitals NHS Trust, Gloucester, UK [9]Plymouth University Peninsula Schools of Medicine and Dentistry, Plymouth, UK [10]St George’s University Hospitals NHS Foundation Trust, London, UK [11]Department of Neurology, Great Ormond Street Hospital, London, UK [12]Guy’s and St Thomas’ National Health Service Foundation Trust, London, UK [13]Queen Square MS Centre, UCL Queen Square Institute of Neurology, Faculty of Brain Sciences, University College London, London, UK [14]Preventive Neurology Unit, Wolfson Institute of Population Health, Queen Mary University London, UK [15]Department of Paediatric Neurology, Children’s Hospital, John Radcliffe Hospital, Oxford, UK

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关键词： NMOSD MOGAD Epidemiology Bias

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Neuromyelitis optica spectrum disorder (NMOSD) and myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) are rare disorders often seen in highly specialized services or tertiary centres. We aimed to assess if cohort characteristics depend on the origin of the referral catchment areas serviced by our centre (i.e. local, regional or national).Retrospective cohort study using a national referral service database including local (Oxfordshire), regional (Oxfordshire and neighbouring counties), and national patients. We included patients with the diagnosis of NMOSD, seronegative NMOSD or MOGAD, followed at the Oxford Neuromyelitis Optica Service.We included 720 patients (331 with MOGAD, 333 with aquaporin-4 antibody (AQP4)-NMOSD, and 56 with seronegative NMOSD. The distribution of diagnoses was similar across referral cohorts. There were no significant differences in the proportion of pediatric onset patients, sex, or onset phenotype; more White AQP4-NMOSD patients were present in the local than in the national cohort (81 % vs 52 %). Despite no differences in follow-up time, more relapsing MOGAD disease was present in the national than in the local cohort (42.9 % vs. 24 %, p = 0.029).This is the first study assessing the impact of potential referral bias in cohorts of NMOSD or MOGAD. The racial difference in the AQP4-NMOSD cohorts likely reflects the variation in the population demographics rather than a referral bias. The over representation of relapsing MOGAD patients in the national cohort probably is a true referral bias and highlights the need to analyze incident cohorts when describing disease course and prognosis. It seems reasonable therefore to compare MOGAD and NMOSD patients seen withing specialised centres to general neurology services, provided both use similar antibody assays.Copyright © 2024 The Author(s). Published by Elsevier B.V. All rights reserved.

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出版当年[2023]版：

大类 | 3 区医学

小类 | 4 区临床神经病学

最新[2025]版：

大类 | 3 区医学

小类 | 4 区临床神经病学

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第一作者单位： [1]Serviço de Neurologia, Departamento de Neurociˆencias e Saúde Mental, Hospital Santa Maria, Centro Hospitalar Universit´ario Lisboa Norte, Lisbon, Portugal [2]Nuffield Department of Clinical Neurosciences, John Radcliffe Hospital, University of Oxford, Level 3, West Wing, Headley Way, Oxford OX3 9DU, UK

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A study of referral bias in NMOSD and MOGAD cohorts

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