Delay in Treatment Initiation for NMOSD: A Study of Timeframes in a Brazilian Cohort

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Abstract

Introduction - Neuromyelitis optica spectrum disorder (NMOSD) is a disabling autoimmune condition Bottom of Formprimarily causing visual and spinal cord impairments, significantly affecting patients' quality of life. Delayed diagnosis and treatment can exacerbate severe relapses, resulting in cumulative neurological damage and increased disability. Objectives - The primary objective of this study was to assess the time elapsed between the first symptoms at disease onset and the beginning of prophylactic treatment among a cohort of Brazilian NMOSD patients. Methods - We reviewed the medical records of a cohort of NMOSD patients who met the IPND criteria, consecutively seen at CIEM MS Research Center. Demographic and clinical data were assessed. Results – In this study of 85 patients, most were female (82.3%). Racial distribution was: white 40%, black 21.1%, mixed race/ethnicity 36.5%, and Asian 2.4%. The median age at NMOSD onset was 31 (5-68) years old. AQP4-IgG was positive in 54.1% and negative in 34.1%. AQP-4 antibody status was unknown for 11.8%. The median EDSS score was 5.0 (range 0-8.5), with a median disease duration of 109 months (range 9-360). The median time to treatment initiation was 52 months (range: 0-324), with 12.9% starting within 6 months, 31.8% within 12 months, and 47% within 24 months. Drugs used in the prophylactic treatment included prednisone and azathioprine. Only 3.5% of the patients started treatment at disease onset. Conclusion – Our findings highlights a significant delay between the initial presentation of NMOSD and the initiation of prophylactic treatment in Brazil. Educating healthcare providers on early recognition of NMOSD symptoms and the importance of timely intervention could help maintain neurological function, and enhance patient outcomes.

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Institutions
  • 1 CIEM MS Research Center, Federal University of Minas Gerais Medical School, Belo Horizonte, Brazil.
Track
  • 6. NMO, ADEM and CIS
Keywords
Neuromyelitis spectrum disorders
prophylactic treatment
time to treat
outcomes