Research priorities in multiple sclerosis in Latin America: A multi-stakeholder call to action to improve patients care

Autor: Nora Fernández Liguori, Victor F Hamuy, Juan Ignacio Rojas, Victor M. Rivera, Jefferson Becker, Jorge Correale, Alejandro J Diaz, Edgar Carnero Contentti, Orlando Garcea, Adriana Aguayo, Javier A. Navarra, Paula Henestroza, Andrea K Bustos, Adriana Carrá, Melisa D. Godoy, Susana Giachello, María C. Ysrraelit, Claudia Cárcamo, Liliana Patrucco, Jose Flores, Marina Alonso Serena, Darwin Vizcarra, Fernando Gracia, Alma R Rosa Martinez, Edgardo Cristiano, Ricardo Alonso, Magdalena Pérez Bruno, Edgard P Correa Diaz, Johana Bauer, Carlos Navas, Sandra Vanotti, Patricio Abad, Macarena Vazquez, Andrea S Prato, Manuel Fruns
Rok vydání: 2021
Předmět:
Zdroj: Multiple Sclerosis and Related Disorders. 53:103038
ISSN: 2211-0348
DOI: 10.1016/j.msard.2021.103038
Popis: As human and economic resources are limited, especially in Latin America (LATAM), it is important to identify research priorities to improve multiple sclerosis (MS) patients care in the region. The objective was to generate a multidisciplinary consensus on research priorities in MS for patients care in LATAM by involving healthcare professionals and MS patient associations. METHODS: consensus was reached through a four-step modified Delphi method designed to identify and rate research priorities in MS in LATAM. The process consisted of two qualitative assessments, a general ranking phase and a consensus meeting followed by a more detailed ranking phase RESULTS: a total of 62 participants (35 neurologists, 4 nurses, 12 kinesiologists, 7 neuropsychologists and 4 patient association members) developed the process. At the final ranking stage following the consensus meeting, each participant provided their final rankings, and the top priority research questions were outlined. 11 research priorities were identified focusing on healthcare access, costs of the disease, physical and cognitive evaluation and rehabilitation, quality of life, symptoms management, prognostic factors, the need of MS care units and patient's management in emergencies like COVID-19. CONCLUSION: this work establishes MS research priorities in LATAM from multiple perspectives. To pursue the actions suggested could launch the drive to obtain information that will help us to better understand the disease in our region and, especially, to better care for affected patients.
Databáze: OpenAIRE
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