MS Care Not So Routine During the Pandemic

Risk of infection topped the list of concerns among patients with multiple sclerosis (MS) who altered their usual care routines during the COVID-19 pandemic.

Among the 472 patients with multiple sclerosis (MS) who answered an email survey in April 2020, risk of possible COVID-19 infection was their No. 1 concern in the early weeks of the pandemic for steering away from their normal care routine. This often resulted in delayed appointments and postponed laboratory or MRI studies, but it did not seem to affect their adherence to disease-modifying therapies (DMTs).

While previous research shows that choice of DMT is less likely to predict COVID-19 infection in patients with MS, the present authors sought to quantify patients’ overall perceptions of risk and care adherence during the pandemic as they pertained to appointments, lab studies, MRIs, and DMTs.

Their findings were published in Multiple Sclerosis and Related Disorders.

The survey invitations were sent to patients receiving care at the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at Mount Sinai in New York City. The response rate was approximately 17%, and 79% were women or Caucasian (71.1%). Most were aged 40 to 49 years (26.8%) or 50 to 59 years (24.7%). Ocrelizumab, dimethyl fumarate, and glatiramer acetate were the most common DMTs, at 25.5%, 17.7%, and 11.3%, respectively.

Beyond their top concern of infection with COVID-19 (88%), the survey respondents also worried principally about higher infection risk from having MS (70%) and taking DMTs (68%). Stemming from this, many postponed appointments (41%), lab studies, (46%) and MRI studies (41%). Just 13% were nonadherent to their DMTs.

In particular, they were asked if they agree or strongly agree with these statements:

  • “I am or was concerned about becoming infected with COVID-19”
  • “I am or was concerned my diagnosis of MS or related disorder alone puts me at higher risk for infection with COVID-19”
  • “I am or was concerned my medication for MS or related disorder puts me at higher risk for infection with COVID-19”

Most strongly agreed with each statement (54.1%, 38.6%, and 36.5%, respectively); few disagreed (1.5%, 4.6%, and 5.5%).

Their responses also showed that they usually made the call to veer away from their normal care routine, with 68%, 70%, 67%, and 65% of patients choosing to do so for appointments, lab studies, MRI studies, and DMTs, respectively. In fact, 77.2% of patients receiving infusion DMTs and 65.9% of patients receiving noninfusion DMTs strongly agreed they were concerned about COVID-19 infection, with those in the infusion group more likely to alter their treatment schedules (P < .001). Overall, nonadherence rates were low in both groups, at 21.6% and 6.2%, respectively.

Just a small amount of the survey participants reported exposure to someone with suspected COVID-19 infection (19.7%), and even fewer were in contact with someone who had a confirmed COVID-19 case (10.4%). And of the 6.7% who were tested at the time of the survey, less than half (40%) received positive results.

The investigators’ analysis also shows a strong association between the following:

  • Postponed appointments and concern for COVID-19 infection (P = .020)
  • Postponed lab studies and concern for COVID-19 infection (P = .016)
  • Younger age (<50 vs >50 years) and postponed appointments (P = .003)
  • Being a woman and postponing lab studies (49.0% vs 32.8% of men; P = .011)

Weaker associations were seen for COVID-19 infection concern and adherence to MRIs (P = .518) or DMTs (P = .502).

The study authors note that despite patients receiving information on MS and COVID-19, their results “identify a potential gap between provider and patient understanding of COVID-19 infection risk in MS,” which highlights a need for more research related to COVID-19 and MS, as well as more effective patient education.

“Overall, these results highlight the uncertainty and the challenges in continuing care for MS during the COVID-19 pandemic,” the authors concluded. “Further research will guide the MS community towards better understanding of the risk of MS and DMTs in COVID-19 infection as well as the impact of postponing MS care during the pandemic on MS disease outcomes.”


Zhang Y, Staker E, Cutter G, Krieger S, Miller AE. Perceptions of risk and adherence to care in MS patients during the COVID-19 pandemic: a cross-sectional study. Mult Scler Relat Disord. Published online February 23, 2021. doi:10.1016/j.msard.2021.102856

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