Abstract General Information

Title

NMOSD leads to unemployment in high educational level people with NMOSD (pwNMOSD): results of an online survey with 146 NMOSD patients.

Abstract

Introduction: This is the first brazilias study of employment impacts of NMOSD diagnosis in pwNMOSD. The results are alarming reagarding low level of employment in pwNMOSD, even in high-educational level population . There is a high level of unemployment and there seems to be a relation with the diagnosis and disability.

Objectives: describe results of an online survey applied to 146 self-reported people with NMOSD.
Methods: an online survey was sent to NMOSD patients included in digital platform base of a Brazilian patient association, to investigate their employment status and relations with other factors such as educational level, time of diagnosis, time from first symptom to diagnosis, mobility (assessed by SRDSS) and visual capacity
Results: 57% were unemployed. Of the employed, only 13% were on a. specific role for disabled individuals. 146 self-reported pwNMOSD answered the survey. 39% were under temporary social security benefits or retired due to disability. Median age was 39yo. 10 women:1 man ratio. Median time since diagnosis was 6,0 years(0-15), and 79% of patients had high mobility status SRDSS correspondent to EDSS< 7, 79% had self reported visual acuity with or without assistive technology and independent for daily life activities. Country-wide distribution was similar to the general population. 53% had a College degree or higher.
The unemployed population seems to have worse mobility (60% SRDSS equivalent to EDSS>4-6,5 versus 81% ≤3,5), lower educational level, and slightly worse visual acuity. There was no significant difference on DMDs, disease time, time-to-diagnosis, country region or AQP4 or MOG antibodies status..
Conclusion: this is the first study of employment status and NMOSD impact in Brazilian pwNMOSD. Considering the age and low level of neurologic disability, NMOSD diagnosis has a high impact in employment status, which leads to the fact that there is a lack of any specific labor legislation for pwNMOS, or even leveraged employment programs for disabled people. .

Area

NMO, ADEM and CIS