Hard times during the pandemic – our readers respond
MSology posted a survey last month to ask people about their experiences living with MS during the COVID-19 pandemic. The results show that many people have experienced very hard times – often without receiving the care they need.
A total of 65 people answered the survey over the two-week period starting on April 21. Most respondents (78%) were women and tended to be older (average age was 57). Most respondents lived in Canada, with a smattering of people from as far afield as India and Australia. About 60% of people have been living with MS for over 10 years; the average age at diagnosis was 42 years. Despite an older age and long-standing MS, 59% of people said they had relapsing-remitting MS. About 17% had primary-progressive MS and 17% had secondary-progressive MS.
Overall, 57% of people were currently taking a disease-modifying therapy (DMT) for their MS and 43% were not on treatment. It may be that the proportion being treated was lower than normal due to the older age of some of the respondents. The most common medications were Ocrevus (22%) and Copaxone (9%). Other DMTs mentioned were Aubagio, Gilenya, Tecfidera, Mavenclad and Kesimpta.
Most people (91%) have received the two-dose regimen of COVID vaccines, and many (69%) had received a booster shot. Only 7% of people said they were unvaccinated. Fortunately, most people (71%) in our sample had not contracted COVID-19; 29% said they had suspected or confirmed COVID.
During the pandemic, the preferred sources of information about COVID-19 were websites (including MSology), cited by 38%; and traditional media (TV, newspapers, etc.), mentioned by 26%. In contrast, government (31%) and websites (22%) were the main sources for information about COVID vaccines. While there has been widespread criticism of social media as a source of news, few respondents turned to these platforms for information about COVID (7%) or vaccines (5%).
At the start of the pandemic, there were many uncertainties about how COVID would affect people with MS; as vaccines were introduced, there were concerns about the impact of DMTs on the vaccine response. These concerns were reflected in the survey. When asked about the biggest concern during the pandemic, the most common were fears about developing severe COVID/needing to be hospitalized, getting infected (with all its uncertainties) and dying. About 10% said they were worried that COVID would worsen their MS. About 10% said that social distancing and being apart from family were difficult. A similar proportion had the opposite concern – they were afraid of social contacts, fearing that their MS or their medications made them more vulnerable.
It should be noted that MS in itself does not appear to increase the risks associated with COVID; rather, the people at risk of severe COVID are mostly older people and those with other medical conditions. That is why during the pandemic, doctors advised people to keep treating their MS to reduce relapses and disability worsening. (For more on this topic, see COVID vs. MS treatments, MSology, February 24, 2022.)
Access to care
One of the more troubling lessons learned from the pandemic was the fragility of our healthcare systems. Hospitals were quickly overwhelmed, resources were limited, GPs were frequently absent, MS clinics were closed to in-person visits. During this time, survey respondents were very unhappy with the amount and quality of information they received from their neurologist or MS clinic. Satisfaction scores (rated from 0 to a high of 10) were very low for the information provided for all topics we asked about: the COVID risk for people with MS (average score 4.4), need to take precautions (5.7), safety of MS medications (4.5), safety of COVID vaccination for people with MS (4.9) and the safety/timing of medications during vaccination (5.0). This may reflect the often-contradictory recommendations made by different groups over the past two years, uncertainty stemming from the limited and evolving data available, and the politicization of some of the issues (masks, vaccines).
Access to MS clinics was generally limited, at least in the initial phases of the pandemic. A minority of respondents said they had the usual in-person visits (19%). Most people had contact with the MS team via a mixture of in-person and virtual (phone or video) visits (24%), phone calls only (14%), or videoconferencing only (9%). However, a worrisome finding was that one-third of people said they did not have regular contact with their MS care team, or spoke with a healthcare professional only if they called the clinic. Furthermore, 48% of respondents said they saw their healthcare team less often during the pandemic, or had infrequent or no contact with an MS care provider.
As mentioned above, doctors have generally advised people to stay on their DMT; the rationale is that the long-term impact of untreated MS will be more severe than the short-term concerns of COVID infection. Accordingly, 70% of respondents on treatment said that no changes were made to their regimen. In some cases, the timing or dose was changed (15%), drugs were sometimes switched (10%) or stopped altogether (5%).
Phone and video calls were a necessary stopgap early on, but it was soon acknowledged that these contacts do not allow for the best quality of care. During phone/video conversations, healthcare providers most often asked about new symptoms and relapses (45%) and whether symptoms (31%) or disability (37%) were getting worse. People were questioned less often about their mood or anxiety level (29%), problems in daily functioning (22%) or cognitive difficulties (19%). Most people said their MS was stable during the pandemic, but 21% said their symptoms became more frequent or severe, and 22% said their level of disability became worse.
Three-quarters of respondents said their quality of care was unchanged despite all of the limitations imposed by the pandemic. Many had high praise for the care they received from their MS clinic. However, for some respondents, “unchanged” meant the quality was poor before and did not improve with the pandemic. About 22% said their level of care deteriorated; the reasons cited for poor-quality care included physician burnout, clinics that did not take or return calls, and healthcare professionals who quit or retired.
Impact on daily life
Some survey respondents said that they have fared well during the pandemic. They have not missed commuting to work or travelling to medical appointments, and they enjoyed spending more time at home with their families. However, most said the social isolation has had a profound effect on their quality of life. People miss seeing family and friends (including older relatives in lockdown) and feel isolated and alone. MS has imposed added worries – about personal safety, about whether vaccines will work, and whether health services will be available if needed. Many people said the pandemic has left them feeling anxious and depressed. For some in the MS community, these worries will persist as restrictions get lifted and people emerge from isolation, which may prompt a new wave of infections. Some people may get some reassurance from a second booster shot – an issue we will be reviewing soon in MSology.
As conditions slowly return to something approaching normal, it will be important for people to reacquaint themselves with care: visiting the MS clinic, being evaluated by their doctor, undergoing tests, and adjusting the treatment regimen if needed. Before visiting your doctor, it may be helpful to jot down a list of things you would like to talk about, such as new symptoms or relapses you have experienced since your last visit, problems you have been having in your daily life, or challenges you’ve been facing (e.g. depression, anxiety, cognitive difficulties) during these difficult and seemingly endless pandemic years.
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