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CC BY 4.0 · Arq Neuropsiquiatr 2024; 82(S 01): S1-S52
DOI: 10.1055/s-0044-1789415
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Functional disability of neuromyelitis optica spectrum disorder in Brazil

Authors

  • Bianca Oliveira

    1   Centro de Referência em Esclerose Múltipla da Paraíba, João Pessoa PB, Brazil.

  • Bruna Rocha

    2   Associação Brasileira de Neuromielite Óptica, Salvador BA, Brazil.

  • Cleide Pires

    2   Associação Brasileira de Neuromielite Óptica, Salvador BA, Brazil.

  • Wedson Santos

    2   Associação Brasileira de Neuromielite Óptica, Salvador BA, Brazil.

  • Juliana Almeida

    2   Associação Brasileira de Neuromielite Óptica, Salvador BA, Brazil.

  • Dulcila Torres

    2   Associação Brasileira de Neuromielite Óptica, Salvador BA, Brazil.
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Address for correspondence: Bianca Oliveira (email: oliveira_bes@hotmail.com).

Abstract

Background: Neuromyelitis optica spectrum disorder (NMOSD) is a central nervous system antibody‐mediated disease which affects mainly the optic nerves and the spinal cord, but it may also present with acute brainstem syndrome, acute diencephalic syndrome, and cerebral syndrome with typical brain lesions. The disorder was identified as a distinct clinical entity with the discovery of aquaporin-4 immunoglobulin G antibodies (AQP4-IgG).

Objective: To assess aspects of functional disability found in 50 self-reported questionnaires.

Methods: The present is a cross-sectional observational study that used a self-reported questionnaire filled out by 50 individuals diagnosed with NMOSD. It was made available through an online platform after the individuals provided informed consent and distributed in online groups of NMOSD patients. This questionnaire was composed of questions on sociodemographic and functional aspects. General data were expressed through descriptive analysis, and count data were expressed through frequencies and percentages.

Results: In total, 41 valid questionnaires were obtained from the 50 individuals who filled it out throughout 2023, a process facilitated through a collaboration with the Brazilian Association of NMOSD (Associação Brasileira de Neuromielite Óptica, ABNMO, in Portuguese). The respondents were predominantly female (79%) and Caucasian (41%), with 49% in the age group between 20 and 39 years. Despite the fact that 57% of them had completed higher education, most (56%) were either unemployed or on leave. Approximately 42% relied on the public health system for medical care. Regarding treatment, 72% reported using off-label medications, while 25% relied solely on oral steroids. Visual and/or motor disability was reported by 49% of the patients, with 21% requiring a cane or walker for ambulation.

Conclusion: The present is the first collection of functional and social data through ABNMO data. These features are very important to know the functional impact on quality of life experienced by Brazilian patients. Those aspects can help in public management projects and in the development of a diagnosis and on-label treatment protocol aimed at the profile of NMOSD patients in Brazil.


No conflict of interest has been declared by the author(s).

Publication History

Article published online:
02 October 2024

© 2024. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution 4.0 International License, permitting copying and reproduction so long as the original work is given appropriate credit (https://creativecommons.org/licenses/by/4.0/)

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