Status of the neuromyelitis optica spectrum disorder in Latin America
Rivera, Victor M.
Baylor College of Medicine
Hamuy, Fernando
Ctr Nacl Esclerosis Multiple
Rivas, Veronica
Inst Nacl Neurol & Neurocirugia Manuel Velasco Su
Gracia, Fernando
Hosp Santo Tomas
Ignacio Rojas, Juan
Ctr Esclerosis Multiple Buenos Aires
Bichuetti, Denis Bernardi
Universidade Federal de Sao Paulo (UNIFESP)
Maria Villa, Andres
Hospital Ramos Mejia
Marques, Vanessa Daccah
Universidade de Sao Paulo
Soto, Arnoldo
Ctr Med Docente La Trinidad
Bertado, Brenda
Instituto Mexicano del Seguro Social
Trevino Frenk, Irene
Inst Nacl Ciencias Med & Nutr Salvador Zubiran IN
Galleguillos, Lorna
Clinica Alemana
Quinones, Jairo
Fdn Valle del Lili
Ramirez, Deyanira A.
Hosp Docente Padre Bellini
Caparo-Zamalloa, Cesar
Inst Nacl Ciencias Neurol
Ciampi, Ethel
Pontificia Universidad Catolica de Chile
Lana-Peixoto, Marco A.
Universidade Federal de Minas Gerais
Rodriguez, Emmanuel
Instituto Mexicano del Seguro Social
Zarco, Luis
Pontificia Univ Javeriana Hosp Univ San Ignacio
Sinay, Vladimiro
Fdn Favaloro
Armas, Elizabeth
Ctr Med Docente La Trinidad
Becker, Jefferson
Pontificia Universidade Catolica Do Rio Grande Do Sul
Benzadon, Aron
Caja del Seguro Social (CSS)
Lopez, Ericka
Hosp Rosales
Carnero Contentti, Edgar
Hospital Aleman
Patricio Correa-Diaz, Edgar
Hosp Carlos Andrade Marin
Veronica Fleitas, Cynthia
Instituto de Prevision Social (IPS)
Playas, Gil
Hospital General de Mexico
Molina, Omaira
Hosp Univ Maracaibo
Rojas, Edgard
Seguro Social de Salud del Peru
Sato, Douglas
Pontificia Universidade Catolica Do Rio Grande Do Sul
Soto, Ibis
Hosp Clin Maracaibo
Vasquez Cespedes, Johana
Hosp San Juan Dios
Correale, Jorge
Inst Fleni
Barboza, Andres
Hosp Cent Mendoza
Monterrey, Priscilla
Caja Costarricense Seguro Social
Candelario, Awilda
Grp Med San Martin
Tavolini, Dario R.
Neurociencias Orono
Parajeles, Alexander
Hosp Clin Bibl
Pujol, Biany Santos
Hosp Reg Univ Jose Maria Cabral y Baez
Diaz de la Fe, Amado
CIREN
Alonso, Ricardo
University of Buenos Aires
Bolana, Carlos
Hosp Pasteur
Kagi Guzman, Marianne
Clin Vila
Carra, Adriana
Hospital Britanico de Buenos Aires
Gonzalez Gamarra, Oscar
Clin Privadas
Vera Raggio, Jose
Seguro Social de Salud del Peru
Cesar Rodriguez, Luis
Inst Hondure Seguridad Social
Eunice Ramirez, Nicia
Hosp Dr Mario Catarino Rivas
Ordonez, Laura
Hosp Espanola Mexico
Skromne, Eli
Inst Mexicano Neurociencias
Lbeth Portillo, Ligia
Inst Guatemalteca Seguridad Social
Perez Canabal, Alfredo
Weiser, Roberto
Hosp Horacio Oduber
Sirias, Vanessa
Hosp San Felipe
Fernandez Calderon, Ramiro
Hosp Clin Magallanes
Arturo Cornejo, Ernesto
INstt Salvadoreno Seguro Social
Hernandez, Marianella
Clinica Alemana
Duran Quiroz, Juan Carlos
Neurocentro
Alberto Garcia, Luis
Hosp Mil
Oviedo Cedeno, Carlos
Caja Costarricense Seguro Social
Martinez, Jorge
Hosp Vivian Pellas
Abad-Herrera, Patricio
Hosp Metropolitano
Journal
Multiple Sclerosis and Related Disorders
ISSN
2211-0348
2211-0356
Open Access
hybrid
Volume
53
Background: Neuromyelitis optica spectrum disorders (NMOSD) is an increasing diagnostic and therapeutic challenge in Latin America (LATAM). Despite the heterogeneity of this population, ethnic and socioeconomic commonalities exist, and epidemiologic studies from the region have had a limited geographic and population outreach. Identification of some aspects from the entire region are lacking. Objectives: To determine ethnic, clinical characteristics, and utilization of diagnostic tools and types of therapy for patients with NMOSD in the entire Latin American region. Methods: The Latin American Committee for Treatment and Research in MS (LACTRIMS) created an exploratory investigational survey addressed by Invitation to NMOSD Latin American experts identified through diverse sources. Data input closed after 30 days from the initial invitation. The questionnaire allowed use of absolute numbers or percentages. Multiple option responses covering 25 themes included definition of type of practice; number of NMOSD cases; ethnicity; utilization of the 2015 International Panel criteria for the diagnosis of Neuromyelitis optica (IPDN); clinical phenotypes; methodology utilized for determination of anti-Aquaporin-4 (anti-AQP4) antibodies serological testing, and if this was performed locally or processed abroad; treatment of relapses, and long-term management were surveyed. Results: We identified 62 investigators from 21 countries reporting information from 2154 patients (utilizing the IPDN criteria in 93.9% of cases), which were categorized in two geographical regions: North-Central, including the Caribbean (NCC), and South America (SA). Ethnic identification disclosed Mestizos 61.4% as the main group. The most common presenting symptoms were concomitant presence of optic neuritis and transverse myelitis in 31.8% (p=0.95); only optic neuritis in 31.4% (more common in SA), p<0.001); involvement of the area postrema occurred in 21.5% and brain stem in 8.3%, both were more frequent in the South American cases (p<0.001). Anti-AQP4 antibodies were positive in 63.9% and anti-Myelin Oligodendrocyte Glycoprotein (MOG) antibodies in 4.8% of total cases. The specific laboratorial method employed was not known by 23.8% of the investigators. Acute relapses were identified in 81.6% of cases, and were treated in 93.9% of them with intravenous steroids (IVS); 62.1% with plasma exchange (PE), and 40.9% with intravenous immunoglobulin-G (IVIG). Therapy was escalated in some cases due to suboptimal initial response. Respondents favored Rituximab as long-term therapy (86.3%), whereas azathioprine was also utilized on 81.8% of the cases, either agent used indistinctly by the investigators according to treatment accessibility or clinical judgement. There were no differences among the geographic regions. Conclusions: This is the first study including all countries of LATAM and the largest cohort reported from a multinational specific world area. Ethnic distributions and phenotypic features of the disease in the region, challenges in access to diagnostic tools and therapy were identified. The Latin American neurological community should play a determinant role encouraging and advising local institutions and health officials in the availability of more sensitive and modern diagnostic methodology, in facilitating the the access to licensed medications for NMOSD, and addressing concerns on education, diagnosis and management of the disease in the community.