Coping with COVID-19 – survey results
Most people with multiple sclerosis appear to be coping well during the COVID-19 pandemic – despite worries about their health and feeling cut off from family and friends.
MSology posted a survey on March 26 to ask readers about some of their challenges during the pandemic. A total of 72 people responded. Most people were in their thirties (19%), forties (18%) or fifties (35%) and lived in Canada (63%). Only one person said they had been diagnosed with COVID-19 – so most people appear to be keeping safe during the pandemic.
About 60% of people said they’d contacted their neurologist or MS clinic during the pandemic. Their main questions were about whether COVID-19 would worsen their MS, and whether they should remain on their current disease-modifying therapy (DMT) for their MS. Some also wanted to know if they could still visit the MS clinic, while others wanted to ask about the availability of other healthcare services (e.g. physiotherapy) or homecare services.
Fewer people (50%) said they’d called their medication support line for information. The key question was whether being on a DMT would affect the risk of contracting COVID-19. Some were concerned about whether MS increases the risk of COVID-19, and a few people raised concerns about whether their insurance coverage would be affected.
Most of the survey respondents (74%) were currently taking a DMT. Many were on a medication that has little or no immunosuppressant effects, such as an injectable (17%), Aubagio (10%), Tecfidera (10%) or Tysabri (3%). About 15% were taking Gilenya, 8% were taking Ocrevus or Mavenclad, and 3% were taking Lemtrada. About 64% said they were going to keep taking their medication as scheduled – which is what the experts have been advising. But about 10% said they had interrupted their therapy, were thinking of taking a break or were worried about being catching COVID-19 if they went to the pharmacy for their refill.
The largest group of people (44%) said that controlling their MS was more important than their COVID concerns. However, about 30% said they were worried about the effects of their treatment on their immune system.
Many people with MS are living with disabilities, which can make self-isolation and access to care that much harder. Fortunately, only 13% of people said they live alone, with the rest living with one or more family members or friends. A majority said they were fully independent (52%) or required only minimal assistance (25%). However, 18% said they needed some help with daily activities and 4% said they needed a high level of personal care. It’s important to remember that having access to homecare or meeting day-to-day needs can be especially challenging during the pandemic – even grocery shopping can be an impossible task for some.
The pandemic has imposed restrictions on many aspects of everyday life, but most respondents said their access to healthcare needs hasn’t been affected. That access may mean a phone call, Skype or Zoom visit with a doctor – an important stopgap but no substitute for in-person care. The Number One issue for people with MS during the pandemic was worrying about their health – their general health as well as their MS. This situation is made worse by the Number Two concern: being unable to socialize with family and friends. The survey results indicate that the current pandemic has elevated personal health and security to the level of major concerns, and is challenging people’s coping ability by isolating them from the support networks that provide needed help and reassurance.
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