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Introduction: Neuromyelitis Optica Spectrum Disorders (NMOSD) are a group of inflammatory, demyelinating diseases characterized by 6 main clinical syndromes, including acute myelitis and optic neuritis. On average, 50% of cases present severe visual and motor sequel after 5 years of evolution, with a significant impact on the functionality of these individuals.
Objectives: To describe the perception of individuals with NMOSD about the impact of motor and visual sequel on the performance of daily activities and locomotion.
Method: This was a cross-sectional observational study using a self-reported questionnaire created by health professionals who are members of the Brazilian Neuromyelitis Optica Association. The questionnaire was made with questions about socio-demographic and healthcare characteristics, the presence of symptoms and their impact on the performance of daily activities and locomotion. It was made available for completion by people diagnosed with NMOSD via online platform after informed consent. The general data was described using descriptive analysis and the count data was analyzed using frequencies and percentages.
Results: a total of 41 of the 55 individuals contacted completed the questionnaire. 79% were female and 38% had been diagnosed for up to 1 year. 35% of the participants had motor and visual sequel; 30٪ had only motor sequel; 25% had only visual sequel and 7.5% had no sequel. Regarding the impact on daily activities, 60% of individuals with motor sequelae need help to perform them. With regard to locomotion, 32.5% need to use some kind of aid (cane, walker or wheelchair).
Conclusion: the motor and visual sequels caused by NMOSD have a considerable impact on independence for daily activities and locomotion, even in individuals with a short diagnosis period.
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