Creating Positive, Helpful Work Environments for Patients With NMOSD: Farrah Mateen, MD, PhD


The associate director of the Multiple Sclerosis & Neuromyelitis Optica Unit at Massachusetts General Hospital discussed the ways employers and clinicians can alleviate work hardships experienced by patients with NMOSD. [WATCH TIME: 3 minutes]

WATCH TIME: 3 minutes

"A lot of people have mentioned protective factors, like flexibility at work, being able to work from home at times or being able to state their needs to disaggregate their disease from MS, which has similar, but often different manifestations. Educate people on what NMO is so that it’s not scary when they have to say something."

At the 2023 Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) Forum, held February 23-25, in San Diego, California, a global study assessed the impact of neuromyelitis optica spectrum disorder (NMOSD) on employment, job loss, work hours, and wages. Thus far, the featured data was from hospital-based sites in countries of all income levels, with responses collected from patients in the Republic of Colombia, Arab Republic of Egypt, Republic of Guinea, Islamic Republic of Iran, State of Kuwait, Malaysia, the United Mexican States, and the Bolivarian Republic of Venezuela. Eligible participants, aged between 18 and 70 years, were asked to complete the 1-time survey of approximately 80 questions on RedCap, requiring approximately 30 minutes.

Findings showed that 58% of the 158-patient cohort lost a job due to symptoms or obligations related to NMOSD. Additionally, 65% reported reductions in their work hours since diagnosis, with a mean lost hours per month of 35.6. At home, 70% of patients reported having a regular unpaid caretaker, of whom almost half (49%) changed their work hours or job to support the patient.

In an interview with NeurologyLive®, senior investigator Farrah Mateen, MD, PhD, talked about the ways to overcome work challenges for the NMOSD community, and how employers can play a critical role in easing these issues. Mateen, associate director of the Multiple Sclerosis & Neuromyelitis Optica Unit at Massachusetts General Hospital, spoke specifically on policy changes needed, adapting to working from home, and why awareness alleviate awkward interactions between a patient with NMOSD and employer.

1. Trapaga Hacker CM, Hjerthen IG, Shirkoohi A, et al. Impact of NMOSD on employment: a global survey. Presented at: 2023 ACTRIMS Forum; February 23-25; San Diego, CA. Abstract P320
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