key: cord-0786479-1gns7qaq authors: Baba, Cavid; Yigit, Pinar; Dastan, Seda; Hancer, Pelin; Sagici, Ozge; Ozakbas, Serkan; Abasiyanik, Zuhal title: Challenges of persons with multiple sclerosis on ocrelizumab treatment during COVID‐19 pandemic date: 2021-10-28 journal: Neurol Clin Neurosci DOI: 10.1111/ncn3.12561 sha: ca02173abae7b43bd8a5c651e22112367f2f0a1f doc_id: 786479 cord_uid: 1gns7qaq BACKGROUND: Coronavirus disease of the 2019 pandemic caused much fear among people with chronic diseases and those on immunosuppressant treatment because of spreading knowledge that the infection has a fatal course in these populations. People with Multiple Sclerosis on ocrelizumab treatment share this fear too. We aimed to investigate treatment and lifestyle changes of people with multiple sclerosis on ocrelizumab treatment during the lockdown. METHODS: We surveyed 199 of our registered multiple sclerosis patients on ocrelizumab treatment by phone. RESULTS: In this survey, delays in treating 22 (11%) patients were not caused by fear of immunosuppressive drug use but rather by the general fear of contracting a fatal disease, which is the case during traveling and hospital visits. There was a positive correlation between living alone and treatment delay (P = .029), emphasizing the role of family support or just the presence of another person during the pandemic. CONCLUSION: Vaccines might soon solve the pandemic's issue, which is not the case with multiple sclerosis progression, so we should think twice before discontinuing the treatment. of COVID-19 infection, we could predict the effect of a particular medication. 5, [10] [11] [12] [13] Firstly, an initial antiviral response during COVID-19 infection is mainly driven by T-cells and B-cells to a lesser extent. So to say B-cell depleting agents may be more favorable than T-cell depleting drugs. 11 Secondly, the acute phase of COVID-19 presenting as acute respiratory distress syndrome (ARDS) is caused by excessive cytokine release; that is why theoretically, immunosuppressants should be helpful in this scenario. Considering immune cells as the main source of cytokines during the infection. 14, 15 Although patients on ocrelizumab survived COVID-19 infection, larger groups are needed to validate this outcome. 11, 14 Considering the magnitude of COVID-19, it is not unusual that information spreads with great speed, and studies related to this pandemic are framed in a short time. Papers report controversial information and do not present definite answers. The pwMS have access to all this information and wonder what they should do during this pandemic. People with chronic diseases and those older than 65 were officially put on lockdown during the pandemic. Nevertheless, they still risk COVID-19 infection 16 during scheduled ocrelizumab infusion visits, MS-relapse, or other nonemergency visits. However, some centers maintained patient control by telehealth or phone visit. 17 Public health measures managed to flatten the peak of virus spread, but this problem could still be with us for several years. MS progression and disability do not seem to be solved shortly; that is why treatment strategies should not be managed in a short-term fashion; we must consider long-term problems and our patients' best interests. 5 Turkish Government officially ended some of the social restrictions on 01.06.2020. We aimed to reach out to pwMS on Ocrelizumab treatment by phone and see how they deal with the situation. Did they get a medical consultation to ease their worries, make decisions by themselves considering routine visits and treatment management, how were these decisions related to their disease status in terms of severity, and how were they influenced by their doctor in charge? Overall, we tried to see the whole picture in this specific group of pwMS, which will give us preliminary information on improving patients' compliance with treatment and seeing challenges from their perspective. Inclusion criteria were a willingness to participate. Exclusion criteria were cognitive decline, which will prevent verbal communication and comprehension. Before the interview, verbal consent was obtained from all the participants. All the participants were asked the same questions in the same order. We gathered information from 199 of a total of 240 registered pwMS who are on ocrelizumab treatment. Forty-one were out of reach or did not answer the phone call. Several attempts were made each time. Data regarding gender, age, disease duration, marital status, duration of being on ocrelizumab treatment, and information about the number of people they live together were taken. After gathering the answers of all the participants, we accumulated Table 1. 12 (6%) missed their scheduled control visit: 7 (3.5%) because they were afraid to go out, and only 5 (2.5%) because of travel restrictions ( Table 2) . 33 (16.6%) responded that their scheduled control was held by phone. Two of them did not get the infusion because they were afraid to go to the hospital, and one was afraid to go out. 177 (89%) of participants continued their treatment during the pandemic. 22 (11%) missed their ocrelizumab infusion because of fear of going out or fear of hospital visits, including those three whose scheduled control visits were canceled but were held by phone (Table 3) . Of those 115 (57.8%) who were doing physical exercises before the pandemic as part of their treatment or healthy lifestyle, no one **"Was held as scheduled" and "Canceled but was held by phone" were grouped as "Had as scheduled". Scheduled visits does not include appointments for infusion therapy. controversies in the published literature, 5,12,14 we did not stop or change current treatment options. We think that the risk of MS worsening, which will inevitably arise with the withdrawal or prolonged delay of ocrelizumab infusion, would be more severe than the threats from the pandemic. Because ocrelizumab is an infusion that must be given once in 6 months, one would expect its protective effects to decrease gradually after 6 months from the last infusion. However, to reduce COVID-19 risk to a minimum, we postponed some scheduled appointments for infusion therapy for a week or 2 weeks. We set up these infusion visits in local clinics close to patients' addresses whenever possible. None of the respondents said that they were afraid of the immunosuppressive effect of ocrelizumab. And out of 11 (5.5%) persons, who were more desperate for contracting COVID-19 infection than their MS exacerbation, only one discontinued the treatment. We may hypothesize that the treatment delay of 22 (11%) participants during the lockdown was not caused by fear of immunosuppressive drug use but rather by a general fear of contracting a fatal disease. The fact that there was not a single positive case of COVID-19 complies with other observations that the incidence of COVID-19 among those on immunosuppressive treatment is not different from the general population or even protected. 14, 15 However, this could also result from the fact that people with chronic diseases and immunosuppressants could be more consistent with public health regulations during the pandemic. 1,2 Which logically could lead to the fewer incidence of COVID-19 infection among this specific group of people. However, this should be demonstrated in population-based studies. Interestingly, 18 (9.1%) of participants noted the positive effect of governmental restrictions. They have more time for themselves, are engaged in exercises, and were protected from stressful work and outdoor environments. In contrast, 53 (26.6%) reported that staying at home increased their level of stress. It shows that lifestyle change could be favorable for some and detrimental for others, stressing patient-based decision making and the importance of issues other than drugs regarding disease management. 18, 19 Discontinuation of DMT for more than six months leads to increased progression rate in older patients and higher relapse rates in younger patients. 20 Because COVID-19 spread continues to be an issue, treatment discontinuation will face us with other problems in future, and we should not forget that it takes time for DMT to be effective. Adherence rates for treatment in pwMS vary from 41% to 88% across studies. 21 In the present study, the adherence rate was 89%, which is more valuable because it was achieved during the pandemic. We looked at the correlation between therapy delay and other factors. We find out that living alone and treatment delay are positively correlated. This relation was statistically significant, but this statement and its clinical significance should be tested in larger groups. Living alone does not mean that a person does not have family or social support, but having someone around could be more supportive during the pandemic. Studies show that treatment adherence is high if patients have external support from spouses and friends. 22 In conclusion, because ocrelizumab is a comparatively novel treatment, it could lead to more concerns during the pandemic; this was one reason we focused our attention on this group of patients. 3, 4 We managed to monitor our patients closely during this pandemic. We understand the importance of good conductance and keeping patients informed about the situation before they fall under the influence of false or unproven news. MS is a progressive and disabling disease, and doctors should think twice before discontinuing the treatment. Not applicable. The authors declare that they have no competing interests. The study conception and methodology were designed by CB, PY, and SO. All authors contributed to the material preparation, data collection. CB performed the formal analysis, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript. The research protocol was approved by Dokuz Eylul University Ethics Committee (code: 2020/15-32). Verbal consent was obtained from all the participants. Verbal consent was obtained from all the participants. The data that support the findings of this study are available from the corresponding author upon request. 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