Impact of the COVID-19 pandemic on the health care of >1,000 People living with multiple sclerosis: A cross-sectional study

Abstract

Background: People with multiple sclerosis (PwMS) experienced changes in health behaviors and access to MS care due to the COVID-19 pandemic. The USA has the highest recognized number of Covid19 infections globally. The extent of the impact of COVID-19 has not been well characterized in large samples of PwMS to date. The MS patient perspective on COVID-19 would complement the physician-reported cases of MS and COVID-19 in the literature. Methods: A cross-sectional survey of adult PwMS was performed online, using the U.S.-based patient-powered iConquerMS™ platform, in April 2020. Results: There were 1,145 respondents (response rate: 20%). 1,019 had a diagnosis of MS and responded completely (average age: 54.2 years, range: 20-81; 79% female; 64% relapsing remitting, 22% secondary progressive, 12% primary progressive; 88% in the USA). 748 (73%) used a DMT in the last year, primarily higherefficacy therapies: ocrelizumab (n=238), dimethyl fumarate (n=85), fingolimod (n=80). The most frequent comorbidities were depression (41%), hypertension (26%), and asthma (12%). Women were more worried than men about COVID-19 (p=0.001); non-white-identifying PwMS believed it was a greater danger to their health than white-identifying PwMS (p=0.002). Through the continuum of symptoms to care, 61% of PwMS (n=617) reported symptoms associated with COVID-19, 39% (n=395) knew someone exposed to COVID-19, 4% (n=38) were aware of a personal COVID-19 exposure, 13% (n=128) wanted testing for COVID-19 but could not access it, and 4% (n=43) were tested. Specific to their MS care, 64% (n=650) canceled a medical visit, 22% (n=222) canceled a neurologist visit, 11% (n=112) canceled an MRI, 21% (n=212) canceled a laboratory test, and 10% (n=98) changed their DMT in some way due to COVID19 including 65 delaying at least one dose. 37% (n=382) had a telehealth visit due to COVID-19. 37% of PwMS (n=374) experienced employment changes, most commonly working from home (n=194) and having work hours reduced (n=65) while 32 lost their jobs. Of the 7 cases who tested positive for COVID-19 (<1% of participants) (5 female; age range: 29-64 years), DMTs included dimethyl fumarate (n=2), ocrelizumab (n=1), rituximab (n=1), and a clinical trial drug (n=1). Conclusions: A majority of people with MS reported interruptions to their MS care along the MS care pathway alongside limited access to COVID-19 testing. Postponements and delays in care were common with 10% of participants reporting a change in their DMT administration. Less than 1% of this self-referred convenience online cohort had a positive test for COVID-19 although more than half reported symptoms that are associated with COVID-19. Organization, 2020) By mid-April, SARS-CoV-2 was detected in 185 countries, had infected at least 19 million people worldwide, and linked to >700,000 deaths. (Johns Hopkins University, 2020) Multiple sclerosis (MS) affects more than three-quarters of a million adults in the U.S.A. People with MS (PwMS) on higher efficacy disease modifying therapies (DMTs) may be at an incr...

The course of COVID-19 infection in patients with multiple sclerosis–The experience of one center based on the population of Upper Silesia

“…Vogel et al reported that most patients with MS reported interruptions to their MS care and limited access to COVID-19 testing, which may have been the cause of this increase. 19 Woo et al reported that patients after COVID-19 recovery presented with substantial neurocognitive deficits related to attention, short-term memory and concentration and language tasks. 20 However, their cognitive status remained unchanged.…”

Monoclonal Antibodies as Neurological Therapeutics

“…Patients on ofatumumab exhibited a significantly lower annualized relapse rate in both trials and the percentage of patients with disability worsening confirmed at 3 and 6 months was also significantly lower with ofatumumab compared to teriflunomide [ 72 ]. Ofatumumab bears the important advantage of being the first self-administered, B cell targeting DMT in MS, delivered via an autoinjector pen, enabling patients to self-administer the treatment at home, avoiding visits to the infusion center, a particularly relevant advantage during the current COVID-19 pandemic [ 187 ].…”

Pandemic forward: Lessons learned and expert perspectives on multiple sclerosis care in the COVID-19 era

“…Stay-at-home orders and social distancing measures have limited in-person interactions with MS care teams and reduced access to health facilities for diagnosis and monitoring. Pandemic-related restrictions and patient concerns of potential infection outside of the home have led to gaps in clinical care, resulting in potential delayed disease evaluation, diagnosis, and monitoring as well as care for non-MS comorbidities ( Vogel et al., 2020 ). Access to critical rehabilitative care such as physical, occupational, and speech therapy has also been disrupted, impacting the holistic approach to patient support.…”

“…Social distancing measures have limited in-person engagements with their social support networks, thereby potentially impacting their mental health ( Bhaskar et al., 2020 ). Mental wellbeing may be further compromised by financial concerns stemming from self-quarantining or job loss, and heightened fears about contracting COVID-19 ( Vogel et al., 2020 ). It is therefore important to ensure that PwMS receive the physical and psychosocial care needed to see them safely through the pandemic ( Figure 1 ).…”