Unemployment, work hour reduction, and income loss: An international, multicentered, cross-sectional study of neuromyelitis optica spectrum disorder

Abstract

Employment; Income; Neurology

Ocupació; Ingressos; Neurologia

Empleo; Ingresos; Neurología

Objectives: To assess loss of employment, work hours, and wages of people with aquaporin-4 antibody-positive or double-seronegative/antibody status unknown neuromyelitis optica spectrum disorder (NMOSD) internationally. Methods: An investigator-designed survey was administered to adults ages 18–70 years with NMOSD and distributed by neurologists in 23 countries, July 2022 to September 2023. Results: There were 897 participants (635 aquaporin-4 antibody positive, 262 double-seronegative/untested; 81.4% female, average age 42.5 years, average disease duration 7.6 years, median 2 disease attacks since diagnosis). NMOSD impact was visual loss (34.0% unilateral; 28.2% bilateral), 61.8% with spinal cord disease, 55.6% with pain, 43.6% with fatigue, 38.2% with depressed mood, and 25.0% with gait aid use. In total, 92.6% took immunosuppressive therapy. Employment rates were 62.6% before and 36.3% after NMOSD diagnosis. In a multivariable model, statistically significant independent associations with unemployment in NMOSD were older age (odds ratio (OR) = 0.97, p < 0.001), being female (OR = 0.48, p < 0.001), bilateral visual loss (OR = 0.61, p = 0.02), highest frequency of depressed mood (OR = 0.29, p < 0.001), and walking aid use (OR = 0.38, p < 0.001). Discussion: Approximately 1/3 of people living with NMOSD of potential working age are in the workforce. Unemployment in NMOSD is associated with previously recognized factors but also self-reported low mood, gait aid use, and bilateral visual loss.

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funding sources for this project include the Sumaira Foundation and an investigatorinitiated grant from Amgen. Both sponsors had no role in the study concept, design, analysis, or decision to submit the work for publication. The authors are grateful to the American Academy of Neurology’s Neuroscience is Rewarding program for an internship scholarship to I.G.H.