Evidence map›Paper›PMID 36826458›Full record

ArticleNeurology and therapy2023

Understanding Treatment Decisions in Neuromyelitis Optica Spectrum Disorder: A Global Clinical Record Review with Patient Interviews.

Ju-Hong Min, Marco Capobianco, Carly Welsh, Patricia Lobo, Gabrielle deFiebre, Marco Lana-Peixoto, Dean M Wingerchuk, Jiawei Wang, Marius Ringelstein

Open access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Neurology and therapy, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
2.3field-weighted citation impact, top 13% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed, 9 citations in OpenAlex.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors at 7 institutions in 7 countries.

Ju-Hong MinDepartment of Neurology, Samsung Medical Center, Sungkyunkwan University School of Medicine, Seoul, South Korea. juhongm@skku.edu.
Marco CapobiancoNeurology Department, "S. Croce E Carle" Hospital, Cuneo, Italy.
Carly WelshBlueprint Partnership, Manchester, UK.
Patricia LoboApotheCom, London, UK.
Gabrielle deFiebreSiegel Rare Neuroimmune Association, Columbus, OH, USA.
Marco Lana-PeixotoFederal University of Minas Gerais Medical School, Belo Horizonte, Brazil.
Dean M WingerchukDepartment of Neurology, Mayo Clinic, Scottsdale, AZ, USA.
Jiawei WangBeijing Tongren Hospital, Capital Medical University, Beijing, China.
Marius RingelsteinDepartment of Neurology, Medical Faculty, Heinrich-Heine-University Düsseldorf, Düsseldorf, Germany.
Aecom (United Kingdom) · GBAzienda Sanitaria Ospedaliera S.Croce e Carle Cuneo · ITBeijing Tongren Hospital · CNHeinrich Heine University Düsseldorf · DEMayo Clinic in Arizona · USSungkyunkwan University · KRUniversidade Federal de Minas Gerais · BR

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionWe sought insights into neuromyelitis optica spectrum disorder (NMOSD) treatment practices worldwide.

methodsNeurologists from the USA, Germany, Italy, Brazil, South Korea, and China completed an online survey, contributing clinical records for aquaporin-4 (AQP4) immunoglobulin G (IgG)-seropositive adults with NMOSD, which included patient demographics, diagnosis, maintenance treatment history, relapse occurrence, and severity. Interviewed patients receiving NMOSD maintenance therapy provided information about their diagnosis, treatment, perceptions about relapse severity or disease stability, and treatment switches.

resultsA total of 389 neurologists submitted clinical records for 1185 patients with AQP4-IgG-seropositive NMOSD; 33 patients with NMOSD were interviewed. Approximately 25% (228/910) of patients from the clinical record review (CRR) were initially misdiagnosed; 24% (8/33) of patients interviewed reported formal misdiagnosis. Misdiagnosis was associated with treatment delay and more relapses compared with correct diagnosis (mean 3.3 vs 2.8). Maintenance therapy was not initiated within 2 months for 47% (221/472) of patients from the CRR and 24% (8/33) of interviewed patients. Oral corticosteroids/immunosuppressive therapies were typically the first maintenance treatment initiated, except for the USA, where monoclonal antibodies were equally likely to be prescribed. Relapse severity influenced the decision to initiate/change therapy and use monoclonal antibodies. Of interviewed patients, 76% (25/33) did not recall having a choice of treatment and many did not know the rationale for treatment choice.

conclusionMisdiagnosis of NMOSD appears to be common and is associated with a delay in initiation of maintenance therapy, with decisions influenced by relapse severity. Further real-world studies assessing relapse severity in treatment initiation/switch are required to revise NMOSD treatment recommendations.

Indexed as

Clinical practiceMedical careNeuromyelitis optica spectrum disorderOptic neuritisReal-world evidenceRelapseTransverse myelitisTreatment

Identifiers

PMID36826458
PMCPMC10043119
OpenAlexW4321748298

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.