key: cord-0694362-kpatzs9g
authors: Zhang, Yinan; Staker, Erin; Cutter, Gary; Krieger, Stephen; Miller, Aaron E
title: Perceptions of risk and adherence to care in MS patients during the COVID-19 pandemic: a cross-sectional study
date: 2021-02-23
journal: Mult Scler Relat Disord
DOI: 10.1016/j.msard.2021.102856
sha: 6e5a4ace5141b11f8bcdb0d51648d98b7e3fd851
doc_id: 694362
cord_uid: kpatzs9g

BACKGROUND: : The COVID-19 pandemic has raised concerns for increased risk of infection in patients with multiple sclerosis (MS) and disrupted their routine MS care. The aim of this study is to characterize the extent of MS patients’ perceptions of risk and adherence to care during the pandemic. METHODS: : A survey was emailed to patients from a large MS center in New York City during the local peak of the pandemic to assess perceptions of infection risk and adherence to MS care including appointments, laboratory studies, MRIs, and taking disease-modifying therapies (DMT). RESULTS: : 529 patients from the MS center responded to the survey during two weeks in April 2020. Patients collectively showed concern about becoming infected with COVID-19 (88%) and perceived a higher infection risk due of having MS (70%) and taking DMTs (68%). Patients frequently postponed appointments (41%), laboratory studies (46%), and MRIs (41%). Noncompliance with DMTs was less common (13%). Decisions to alter usual recommendations for care were made by the patient more often than by the provider regarding adherence to appointments (68%), laboratory studies (70%), MRI (67%), and DMT (65%). Degree of concern for infection was associated with adherence to appointments (p=0.020) and laboratory studies (p=0.016) but not with adherence to MRI and DMTs. Thirty-five patients reported being tested for COVID-19, of whom fourteen reported a positive test. CONCLUSION: : Patients with MS were highly concerned about becoming infected during the local peak of the COVID-19 pandemic. Behaviors that deviated from originally recommended MS care were common and often self-initiated, but patients were overall compliant with continuing DMTs.

The COVID-19 pandemic raised concerns about the risk of infection in populations with underlying health conditions. One such group are people with autoimmune conditions, many of whom take immunomodulatory therapies. 1 Multiple Sclerosis (MS) is an autoimmune disease predominantly characterized by inflammatory activity in the central nervous system, and patients with MS frequently use disease-modifying therapies (DMT) with immunosuppressive mechanisms of action. Compared to the general population, patients with MS also have higher rates of infections and hospitalizations. 2 Although the risk of severe COVID-19 infection in MS patients is overall low, 3 concern for potentially increased risk of COVID-19 infection appears to have altered patients' adherence to care through avoidance of medical facilities and healthcare workers during the pandemic.

A survey was distributed in April 2020 to patients at a large MS center in New York City (NYC) during the local peak of the pandemic where the death toll in the city surpassed 500 daily. 4 The aim of this study was to characterize the degree of concern in MS patients during the height of the pandemic and assess the prevalence of deviations to routine care for MS. In addition, associations between patient characteristics and adherence to care were investigated.

An internet survey was developed using REDCap by physicians at the Corinne Goldsmith Dickinson (CGD) Center for Multiple Sclerosis at Mount Sinai in NYC. The survey collected data on perceptions of COVID-19 infection risk, adherence to routine care for MS, and demographic information. Invitations to participate in the survey by accessing a web address link were emailed to patients at the CGD Center on April 10, 2020. The survey remained accessible for two weeks until April 24, 2020, and two reminders were sent after the initial invitation to increase the response rate.

The survey was sent to all individuals from a patient contact list maintained by the CGD Center. In addition, all patients with a scheduled appointment at the CGD Center from February 2020 to the start of the data collection date were sent invitations to participate in the survey. Prior to the survey distribution, an information document on COVID-19 and MS was sent to all recipients on the contact list, and patients who visited the CGD Center were given a physical copy of the information document. Individuals below age 18 were not permitted to take the survey. Respondents who did not identify themselves as patients at the CGD Center were excluded from data analysis. Results of the survey were analyzed using SAS V9.4 statistical software. Descriptive statistics were generated for categorical variables. Chi-square tests were used to assess relationships between patient characteristics and adherence to care.

The study was determined by the Mount Sinai institutional review board to be exempt human research. Responses to the survey were anonymous and no identifier information were collected. Participants were permitted to leave any survey question unanswered. 

Respondents were presented with 3 statements to assess perception of COVID-19 infection risk and were asked to select their level of agreement with each statement (strongly agree, agree, neutral, disagree, strongly disagree). Each statement also had an additional option for "not applicable," which was not counted in the analysis. Table 2 presents the distribution of responses for each statement on risk of COVID-19 infection.

Respondents were asked about adherence to components of routine care for MS including appointments, laboratory studies, MRIs, and DMTs. In addition, those who deviated from usual recommendations for care were asked to specify whether that decision was primarily theirs or their provider's. A "not applicable" option was designed for patients who were not due for an appointment or procedure at the time of the survey or were not taking DMTs, and responses for this option were excluded from analysis.

Respondents were asked "Did you postpone or not schedule a follow-up appointment for MS or related disorder because of the COVID-19 outbreak?" A significant number (40.8%) answered yes, of whom 68.3% made the decision to delay appointments on their own and the remainder (31.7%) were recommended to do so by their provider. The same questions were asked for laboratory studies and MRIs. Laboratory studies were postponed by 45.6% of respondents, and 40.7% of respondents postponed their MRI.

Decisions to postpone laboratory studies and MRIs were made by patients 70.0% and 67.0% of the time respectively. Respondents were also asked "Did you postpone or stop taking your disease-modifying therapy for MS or related disorder as scheduled at some point because of the COVID-19 outbreak?" A minority (12.5%) stopped or postponed their DMT, of whom 65.4% made the decision on their own. Table 3 presents the distribution of responses for each question on adherence.

Higher degree of concern for COVID-19 infection was associated with postponing appointments (p=0.020) and laboratory studies (p=0.016). Concern for COVID-19 infection was not significantly associated with adherence to getting MRIs and taking

DMTs. There were no significant associations between concern of MS or DMTs increasing the risk of COVID-19 infection with adherence to appointments, laboratory studies, MRIs, or DMTs. Figure 1 shows the frequency of deviations to recommended care for each degree of concern about COVID-19 infection.

Respondents with younger age (<50 vs ≥50) were more likely to postpone appointments (p=0.003), where 52.1% of younger respondents postponed an appointment compared to 37.0% in older respondents. There were no associations between age and adherence to laboratory studies, MRIs, and DMTs. Women were more likely to postpone laboratory studies than males (p=0.011), where 49.0% of women postponed laboratory studies compared to 32.8% in men. There were no associations between sex and adherence to appointments, MRIs, and DMTs. There were no associations between race and adherence to appointments, laboratory studies, MRIs, and DMTs.

There was an association between patients receiving an infusion DMT including natalizumab, rituximab, or ocrelizumab as opposed to a non-infusion DMT and increased perception that their medication increased the risk for COVID-19 infection (p=0.028). Of patients receiving infusion DMTs, 77.2% agreed or strongly agreed with the statement regarding concern for infection with COVID-19 compared to 65.9% who used a non-infusion DMT. Patients receiving an infusion DMT were more likely to deviate from the standard treatment schedule compared to those on non-infusion DMTs DMT use and general concern of COVID-19 infection or adherence to laboratory studies and MRIs. Figure 2 shows the frequency of deviations to recommended care by category of DMT use.

The study results show a high degree of concern among MS patients for COVID-19 There were significant associations between concern for COVID-19 infection risk and adherence to appointments and laboratory studies, but not for adherence to MRIs and DMTs. Since most patients with MS are clinically stable at their follow-up visits and do not exhibit laboratory abnormalities, postponing appointments and laboratory studies may avoid unnecessary exposure. Despite the availability of telehealth visits for patients at the CGD Center a month prior to the study, many patients had not pursued this option. The reasons for this are unclear, but may be related to unfamiliarity with this nascent healthcare delivery method at the time of the study. The lack of association between concern for COVID-19 infection and adherence to MRIs suggests that other reasons likely contributed to decisions to postpone care such as limited availability of outpatient MRIs during the pandemic. Although there is well-established racial disparity in the impact of COVID-19, 8, 9 there were no associations between race and adherence to care in this study.

DMT use also influenced patients' perceptions of risk and adherence to care.

Patients who were on infusion DMTs were more concerned that their medication increased the risk of COVID-19 infection, and they were also more likely to deviate from the standard schedule of receiving their infusions than those on other DMTs that can be self-administered. These findings likely result from concern of visiting an infusion center where the risk of exposure to the virus is higher than staying at home. Nevertheless, adherence to DMTs was overall high even for patients strongly concerned about COVID-19 infection, suggesting the perceived need to remain on treatment. On the other hand, patients who were not on DMTs were highly likely to postpone their followup appointments. In this group of patients who most likely do not have clinical disease activity and were not exposed to potential side effects of DMT use, the decision to forgo a follow-up appointment was much less likely to incur health detriments. 

Thoughts on COVID-19 and autoimmune diseases

Dramatically changing rates and reasons for hospitalization in multiple sclerosis

Clinical Characteristics and Outcomes in Patients With Coronavirus Disease 2019 and Multiple Sclerosis. JAMA Neurol. 2020. 4. NYC Health. COVID-19: Data. Accessed

COVID-19 and MS disease-modifying therapies

Risk of COVID-19 infection in MS and neuromyelitis optica spectrum disorders

Italian Study Group on C-iims. An Italian programme for COVID-19 infection in multiple sclerosis

COVID-19 and Racial/Ethnic Disparities

Racial Health Disparities and Covid-19 -Caution and Context