Living with NMOSD makes it difficult to keep a job, US study finds

Study looks at ways to improve employment for people with a disability

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Living with neuromyelitis optica spectrum disorder (NMOSD) and resulting disability can make it hard to find and keep employment, according to a small U.S. study that nonetheless involved patients from more than a dozen states.

Group discussions with 20 people with the rare autoimmune disease — of varying races and ethnicities — highlighted several areas where more systemic support could be provided to NMOSD patients in the workplace. This ranged from more flexible scheduling for medical appointments and greater work-from-home opportunities to a better understanding of the disorder among employers.

“This synthesis presents both the challenges and mitigating factors to employment, as told by people with NMOSD,” the researchers wrote, adding, “The NMOSD patient’s voice is generally lacking in the reported medical literature but provides insights beyond the clinic and thus instructs what clinicians and other stakeholders could do to address real-world issues.”

“These focus group comments may also inspire community programs, non-governmental organization (NGO)-based initiatives, and future governmental policies related to work for people with neurological disabilities,” the team wrote.

The study, “Understanding the employment impact of neuromyelitis optica spectrum disorder in the USA: Mixed methods,” was published in Frontiers in Neurology.

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NMOSD is characterized by inflammation in the spinal cord and the optic nerves, which relay information between the eyes and the brain. It can lead to weakness in the arms and legs, and vision problems.

Although these symptoms of NMOSD can be disabling, there is limited evidence on how the disease affects a person’s work, employment, or income.

In related autoimmune conditions like multiple sclerosis (MS), better understanding of the socioeconomic impacts of rare and/or chronic disorders have helped pave the way toward new interventions to support patients. But according to researchers, “similar work has yet to occur in NMOSD.”

To better understand how this disorder affects employment, a duo of scientists at Harvard Medical School and Massachusetts General Hospital organized three focus groups, with a total of 20 NMOSD patients, to discuss the topic. Among them were 17 women and three men from 14 U.S. states, spanning from California to New Jersey and from Maine to Texas. Group discussions were convened via Zoom in December 2022.

The patients ranged in age from 27 to 62, with a mean age of 43.9 years. Nine identified as white individuals, eight as Black or African American people, three as Hispanic or Latino people, two as Asian individuals, and two as another race.

Most of the patients (80%) were married or partnered, and two caregivers also were available for the discussion, including one providing translation from Spanish.

The majority of participants (85%) were employed at the time of their NMOSD diagnosis. At the time of the focus groups, eight (40%) were working full-time, two (10%) were working part time, and two (10%) were self-employed. One (5%) was a student, one (5%) was retired, and six (30%) were on disability status.

All patients reported that NMOSD had caused difficulties with their employment. For those who developed the disease early in life — before adulthood or in early adulthood — finding work was often impossible, while those who were already working at disease onset were more likely to be able to make accommodations.

Several participants reported a need for better community and employer understanding of NMOSD, particularly as distinct from MS.

Most of the patients were not looking for new employment. Several of them noted that they relied on their jobs to provide health insurance coverage for their NMOSD treatment, which could make them feel “stuck” in their current position.

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“There is an opportunity for pharmaceutical companies to ensure bridging of the high-cost [treatments] as people with NMOSD change jobs and possibly health insurances,” the researchers wrote.

“The ‘long duration before the diagnosis of NMOSD’ was also problematic for some participants, who were initially misdiagnosed with MS, or whose symptoms were dismissed as ‘hysterical’ or ‘vitamin deficiency,’ and led to years of ‘back and forth with neurologists’ before the NMOSD diagnosis was rendered,” the team added.

Patients discussed how NMOSD’s visible and invisible symptoms made working more difficult or complicated. These symptoms included vision problems that make it harder to read, trouble walking or getting around, frequent urination that makes working in an office uncomfortable, and “brain fog” that makes it hard to concentrate.

Reduced sensation, which could make typing difficult, was particularly noted as an issue.

“Identifying opportunities in the workforce for people with college degrees who have difficulty with sensation was identified as an unmet need, including advertisements or curating of job opportunities that are open to people who need assistive technologies to write or type,” the researchers wrote.

Patients also reported experiencing many unpleasant side effects from steroids, anti-inflammatory and immunosuppressive medicines that are often prescribed to help control NMOSD attacks.

“Steroids were very commonly reported to create side effects that were difficult to work with including jitteriness, anxiety, emotionality, irritability, speaking too quickly, inattention, and overeating,” the researchers wrote.

Getting NMOSD treatment also sometimes caused difficulties with work — hospitalizations and treatment appointments can crowd schedules, and regular appointments for interventions like physical therapy aren’t feasible for many people working full-time, the study noted.

“Treatments were especially burdensome in some jobs where limited and often advance scheduling of time off was the norm, such as for schoolteachers, technicians, and police officers,” the team wrote.

They noted that having more flexible scheduling for medical appointments and offering appointments virtually where possible could help reduce the disease burden.

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Many participants reported that having a flexible schedule or working from home could be helpful for navigating employment. Several of them, especially those on immunosuppressive therapies, expressed anxiety about possibly returning to in-office work after employment at home as a consequence of the COVID-19 pandemic.

“The return to work was reported as ‘nerve wracking’ given the risks of COVID-19 but also the need to ‘not make waves during a recession’ was reported,” the researchers wrote.

“Several participants reported a need for better community and employer understanding of NMOSD, particularly as distinct from MS,” to help them navigate employment, the team wrote.

“Improving awareness of NMOSD’s deficits, at times distinct from a more general concept of physical disability, would help people with NMOSD,” they added.

While this study was limited by its small size and exploratory nature, the investigators hope it could be a jumping-off point for future research aiming to better characterize how NMOSD affects job opportunities.

“Future studies of a more quantitative nature on the impact of NMOSD on employment remain highly valuable and could benefit from our draft survey instrument, refined by these group discussions, that is meant to address these themes,” the researchers concluded.

The end goal, according to the team, is to provide better support and opportunities for NMOSD patients in the workplace.