Perceptions of treatment and unmet needs among Brazilian people living with multiple sclerosis

Abstract

Background: Multiple sclerosis (MS) is an inflammatory disease characterized by lymphocytic infiltration into the central nervous system, leading to damage to axonal myelin, gray matter, and microglia. The global prevalence of MS has been rising; however, there is still a notable gab in clinical, epidemiological, and social data specific to the Brazilian population. Understanding the profile and needs of people living with MS (pwMS) is essential to inform public policies, optimize therapeutic strategies, and strengthen health education initiatives Objective: This study aims to describe sociodemographic and clinical characteristics of pwMS in Brazil, assess the impact of the disease across different life domains, evaluate engagement in public policies, identify the information sources used, and characterize treatment patterns, including therapeutic satisfaction. Methods: This is an observational, cross-sectional study conducted with pwMS registered in the “Amigos Múltiplos pela Esclerose” (AME) database. The inclusion criteria consisted of adults aged ≥18 years with a self-reported physician diagnosis of MS; pwMS with cognitive impairment that prevented them from providing reliable responses were excluded. A standardized online questionnaire was developed and emailed to the 8,000 pwMS included in the AME database. Data were collected between April and June 2022 and included sociodemographic and clinical variables, disability levels (SRDSS), the impact of MS across multiple domains, treatment access, engagement in public policies, and treatment satisfaction. All variables were analyzed descriptively. The study was approved by local ethics committees (CAAE: 51375721.0.0000.8098), and all participants provided informed consent. Results: A total of 193 participants were analyzed (84.5% women; mean age 38.1 ± 10.6 years). Most had relapsing-remitting MS (85.9%) and were able to walk >500 m (74%). Reduced mobility was associated with greater professional impact. Mental health was the most moderately affected domain (62.5%), while finances and careers showed the highest rates of severe impact. Blogs and social media were the primary information sources (51.3%), especially Instagram. Most participants had regular follow-up with a neurologist and used some form of disease-modifying therapy (76.2%), with oral treatments being the most common. Overall treatment satisfaction was predominantly very good, particularly among individuals with shorter disease duration. The public health system provided treatment for 63.9% of participants. Conclusion: This study expands the understanding of the clinical, functional, and social profile of Brazilians living with MS. The findings highlight significant impacts on daily life, strong reliance on the public health system, and the prominent role of social media as an information source. These insights may support advancements in public policies, educational strategies, and improvements in the care of pwMS in Brazil.