What feel and how it affects people diagnosed with Multiple Sclerosis in Brazil

• Grant number: 22/12854-3
• Support Opportunities: Scholarships in Brazil - Scientific Initiation
• Start date: December 01, 2022
• End date: November 30, 2023
• Field of knowledge: Health Sciences - Medicine - Medical Clinics
• Principal Investigator: Denis Bernardi Bichuetti
• Grantee: Vinicius Eduardo Vergani
• Host Institution: Escola Paulista de Medicina (EPM). Universidade Federal de São Paulo (UNIFESP). Campus São Paulo. São Paulo , SP, Brazil

Abstract

Introduction: Multiple Sclerosis (MS) is a demyelinating and autoimmune disease that affects the central nervous system (CNS), causing neurological disability due to inflammation and myelin and axonal injury. The first symptoms happen between 20 and 40 years of age with a relapsing-remitting or proggresive course. The main symptoms are paresthesia, weakness, visonloss, loss of control of sfhincter, loss of coordination of voluntary movements, ataxia, fatigue and cognitive disturbances. MS is a severe neurologic disease than affects permanently young individuals, that can impact in their personal aspirations and family and society participations. Objective: to understand symptoms prevalence and how this compromise people diagnosed with MS in Brazil through a self-reported questionnaire based in internacional scales and to correlate the symptoms of the disease with its social and demographic aspects. Measure of quality of life, pain, fatigue, walking and sleeping will be evalueted. These will further be correlated with employment status and use of social beneficits to better understant the ecnonomical and social burden of MS. Methods: This is a cross sectional, online and self-reported survey. The choice to made in online format is to reach as many people as possible of the five macro-regions of Brazil and in with minimum costs. The survey was divulgated by the patient-committed organization Amigos Múltiplos pela Esclerose (AME, http://www.amigosmultiplos.org.br/), the largest patient-committed organization of the Latin America, by e-mail and social media announcement to its affiliated members. The inclusion criteria were people diagnosis with MS, over 18 years old, with internet access, and that consented to participate. Conclusion: The survey was perfomed from March through July of 2022. We will perform a descrptive and multivariated analysis to understand possible symptomatological and clinical correlations of the disease with social and demographic aspects. With the survey we collected 466 answers, becoming the biggest study in Brazil about demograph, clinical, symptomatology and employment status and use of social benefits of people with MS. We believe that the generated data with this research can be used by patients associations and public and privated managers to better develop therapeutic and inclusion actions for this group of vulnerable people.