Impact of neuromyelitis optica spectrum disorder on employment and income in the United States. Ann Clin Transl Neurol 2024 Apr;11(4):1011-1020
Date
02/20/2024Pubmed ID
38374778Pubmed Central ID
PMC11021617DOI
10.1002/acn3.52021Scopus ID
2-s2.0-85186173891 (requires institutional sign-in at Scopus site)Abstract
BACKGROUND AND OBJECTIVES: We aim to characterize the sociodemographic and clinical factors associated with loss of jobs, income, and work hours in people with neuromyelitis optica spectrum disorder (NMOSD) in the United States.
METHODS: A REDCap-based survey was administered to working-age NMOSD patients (18-70 years old) querying demographic information, symptoms, immunosuppression, work hours, income, and caregiver work (11/2022-07/2023). Regression models were developed using MATLAB.
RESULTS: Of 127 participants (97 female; 55% AQP4-antibody, 19% MOG antibody; 69% Caucasian, 7% Hispanic), with an average diagnosis age of 38.7 years, average disease duration of 6.4 years, mean 3.1 attacks, and 94% of whom were treated with immune system-directed therapy (53% rituximab, 8% satralizumab, 7% eculizumab, 6% mycophenolate mofetil, 4% inebilizumab, 2% azathioprine, 10% IVIg, 10% other), 56% lost a job due to NMOSD. Employment decreased 12% (80% pre- to 68% post-diagnosis). Thirty-six percent of participants said they no longer worked outside the home. Significant predictors for post-NMOSD diagnosis employment status included younger age, lower pain level, no walking aids, and having a job prediagnosis. Sixty-eight percent of those employed prediagnosis reduced their work hours, dropping an average of 18.4 h per month since being diagnosed (±10.1 h). Average annual income grew slowly at $1998 during the average 6.4 years of disease duration (14% of the value predicted by the U.S. Bureau of Labor Statistics). Sixty percent of participants had a regular unpaid caregiver; 34% of caregivers changed their work hours or job to help manage NMOSD.
DISCUSSION: We provide a structured analysis of the impact of NMOSD on employment, work hours, and income in the United States, demonstrating its major effect on the livelihoods of patients and their caregivers.
Author List
Hjerthen IG, Trápaga Hacker C, Meador W, Obeidat AZ, Horta L, Mateen FJAuthor
Ahmed Zayed Obeidat MD, PhD Associate Professor in the Neurology department at Medical College of WisconsinMESH terms used to index this publication - Major topics in bold
AdolescentAdult
Aged
Female
Humans
Immunoglobulins, Intravenous
Middle Aged
Mycophenolic Acid
Neuromyelitis Optica
Rituximab
United States
Young Adult
