MS management underwent substantial changes in response to the pandemic, according to a new NeuroSens survey of Canadian neurologists involved in MS care.
The survey was sent to 162 neurologists and there were 46 responses (28% response rate). A majority of respondents (67.4%) have been a neurologist for >10 years; 23.9% have been in practice for 5-10 years and 8.7% for < 5 years. Prior to the pandemic, 26.1% were seeing >40 patients per week, 34.8% were seeing 21-40 patients/week, and 39.1% were seeing <20 patients/week. An estimated 60.0% of patients are RRMS, 24.1% are SPMS, 10.2% are PPMS and 5.5% are CIS. Overall, 82.6% of clinicians said that a majority of patients are currently receiving a disease-modifying therapy (DMT), 10.9% of respondents said that 41-50% of patients are on treatment, and 6.5% said <40% are on a DMT.
Prescribing patterns for first-line therapies were generally unchanged during the pandemic. Most respondents said there was no change for glatiramer acetate (79%), interferon-β (89%), teriflunomide (80%) and dimethyl fumarate (85%).
Substantial changes were reported, however, for selected higher-efficacy DMTs. There was a large increase in natalizumab prescribing (57% unchanged, 43% increased). There was also a net increase in prescribing for ofatumumab (61% unchanged, 24% increased, 15% decreased) and cladribine (54% unchanged, 26% increased, 20% decreased).
The reasons cited by respondents for increasing use of these agents was that they have less immunosuppressive potential, less of an impact on vaccine response, and greater perceived safety during the pandemic.
In contrast, there was a net decrease in prescribing of fingolimod (44% unchanged, 3% increased, 53% decreased) and alemtuzumab (43% unchanged, 57% decreased). Similar decreases were not seen with the other S1PR modulators, such as siponimod (54% unchanged, 17% increased, 29% decreased), ozanimod (86% unchanged, 7% increased, 7% decreased) and ponesimod (96% unchanged, 4% decreased). Prescribing habits for ocrelizumab were more mixed (41% unchanged, 15% increased, 43% decreased).
The reasons cited for decreasing use of a DMT were concerns about the impact of treatment on COVID-19 risk and severity, an attenuated vaccine response, and safety concerns such as severe lymphopenia, prolonged B cell depletion, and infection risk associated with travel to an infusion centre. This is in accordance with the concerns raised by the Canadian Network of MS Clinics, which stated that the risk of COVID-19 infection and COVID severity were higher among patients receiving ocrelizumab and rituximab (https://cnmsc.ca/Covid19VaccineGuidance).
The survey findings suggest that many patients on ocrelizumab were switched to natalizumab or ofatumumab during the pandemic.
Also noteworthy was the finding that when faced with a patient who refused COVID-19 vaccination, many clinicians would be less likely to prescribe an S1PR modulator (57% were less likely to prescribe), a monoclonal antibody (43%) or an intermittent therapy (cladribine, alemtuzumab; 32%).
The use of in-person and remote (telephone, video) visits was evenly divided during the pandemic. Overall, 43.0% used telephone contacts only, 7.5% used video contacts only, 40.1% had in-person visits only and 9.2% used a mix of in-person and remote contacts. An estimated 6.3% of patients were not contacted during the two years of the pandemic.
A majority of clinicians said that certain aspects of MS care cannot be adequately provided by telephone/video visits, such as a neurological examination (98%), a physical exam (91%), disability assessment (78%) and vision testing (76%). There was less agreement that other aspects of care could not be provided, including assessments of relapses (46%), cognition (41%), general functioning (20%), and mood (15%). Few respondents (17%) said they could not initiate a DMT, switch DMTs or change the treatment regimen.
Overall, 63.0% of respondents said that the quality of healthcare that MS patients received during the pandemic was worse, 34.8% said it was about the same, and 2.2% thought it was better.
With the return of in-person visits, the clinical impression of change appears to be mixed. Some respondents said that most patients are about the same or appear stable. However, many said that patients are generally worse, with evidence of disability progression, deconditioning/weight gain and mood/anxiety problems, in part attributable to increased social isolation. A few commented that telehealth did not allow for an adequate evaluation of disability level, and patients may report clinical stability despite worsening symptoms. Lack of access to a family physician during the pandemic was believed by some to be a contributing factor.
Respondents estimated that about 10% of MS patients (range 0-50%) may be reluctant to resume in-person visits. The main reasons mentioned were long travel times, inconvenience (schedule disruption, mobility issues, getting time off work), travel costs (gas, parking), fear of COVID-19 infection (heightened by the lowering of mask mandates), and the perception that in-person assessments do not change much (e.g. during periods of stability).
As in-person visits resume, priority will generally be given to patients who have not been seen for >2 years, symptomatic patients and those with active and/or progressive disease, patients taking a higher-efficacy DMT, and those who are being considered for a change in treatment.
Many respondents acknowledged that telephone follow-ups may be adequate in some circumstances. The general view was that the ideal mix of in-person and remote (telephone or video) visits would be 75/25 for RRMS (i.e. 1 in 4 visits could be done remotely) and 70/30 for progressive MS.
Survey respondents were asked to rate the amount and quality of information about COVID-19 and COVID vaccines on a scale of 0 (low) to 5 (high). The satisfaction scores for all sources were middling at best. The highest rated were the Canadian Network of MS Clinics (mean 3.65), the person’s hospital/institution (mean 3.59), the provincial medical association (3.38), international sources such as the WHO or ECTRIMS (3.29), online media (including NeuroSens; 3.13), and U.S. sources such as the CDC or AAN (3.07). Less satisfactory were the provincial government (2.98), the federal government (2.84), and the CNSF (2.60). The least satisfactory sources of information were traditional print/broadcast media (2.42) and social media (1.33).
Results were similar when respondents were asked to rate their satisfaction about COVID-19 vaccination. The highest rated were the Canadian Network of MS Clinics (3.85), the hospital/institution (3.43), international sources (e.g. ECTRIMS; 3.42), the provincial medical association (3.33), U.S. sources (3.22), and pharmaceutical companies (3.16). The federal government, which includes the National Advisory Committee on Immunization (NACI), was not rated as highly as online sources (2.82 vs. 2.91). Social media was again rated as the least satisfactory information source (1.29).
A concern raised by several respondents was that information about COVID-19 and vaccination was too often based on political considerations rather than scientific evidence, which led to conflicting information (masks, preferred vaccines) and uncertainty for clinicians and patients alike.
The survey asked respondents to write in the three key lessons they learned during the pandemic. Interestingly, 40% of the unprompted responses concerned telehealth. Many stated that telemedicine may play a role in MS management (e.g. symptom assessment, wellness checks) in the short term, but it cannot substitute for in-person assessments and is unreliable in identifying patients who are progressing. As one person commented, “Virtual care is not the art of medicine.” That said, for some a hybrid approach may be preferable in the future to spare some patients, notably those living in remote regions, the inconvenience and cost of some in-person visits.
The pandemic reinforced the view that it is more important to focus on the known risk of MS rather than the unknown risk of COVID. However, the pandemic has prompted some to reevaluate the benefits and risks of high-efficacy therapies such as ocrelizumab. COVID raised concerns about the safety of long-term immune suppression and the potential impact of DMTs on vaccine response.
Perhaps one of the harder lessons learned was how fragile is the current healthcare system, plagued as it is by shortages in personnel and resources. “[The] healthcare system is disorganized and unable to manage a pandemic and other disease care at the same time,” said one clinician. “Individuals in management and leadership positions need to make appropriate decisions at times of crisis, after adequate communication with health care providers, and based on the patients’ best interests.” It remains to be seen if these lessons were also learned by politicians and public officials.