Sociodemographic profile of neuromyelitis optica spectrum disorder patients in Brazil

Address for correspondence: Bianca Oliveira (email: [e-mail]).

Abstract

Background: Neuromyelitis optica spectrum disorder (NMOSD) is a rare and severe inflammatory autoimmune disease of the central nervous system (CNS) that was identified as a distinct clinical entity with the discovery of aquaporin-4 immunoglobulin G antibodies (AQP4-IgG).

Objective: To assess the sociodemographic profile of the respondents of a self-reported questionnaire.

Methods: The present is a cross-sectional observational study that used a self-reported questionnaire composed of questions on sociodemographic aspects. General data were expressed through descriptive analysis, and count data were expressed through frequencies and percentages.

Results: The survey was answered by 50 people in 2023 through a partnership with the Brazilian Association of NMOSD (Associação Brasileira de Neuromielite Óptica, ABNMO, in Portuguese), and we obtained 41 valid filled-out questionnaires. In relation to sex, we found that 79% of the respondents were female, and, regarding skin color, 41% were Caucasians and 23% were Black. Assessing time since the NMOSD diagnosis, 13% had had it for 7 years, and 38%, for 1 year. Furthermore, despite the fact that 57% of the respondents had completed higher education to a Ph.D., 56% were unemployed or on leave, receiving social security benefits.

Conclusion: The present the first collection of epidemiological and social data through ABNMO data. These features are important to know our the characteristics of Brazilian patients that may assist in the development of public management projects, as well as a diagnosis and treatment protocol aimed at the profile of NMOSD patients in Brazil.

Die Autoren geben an, dass kein Interessenkonflikt besteht.

Publikationsverlauf

Artikel online veröffentlicht:
02. Oktober 2024