In this study, we first evaluated patients’ knowledge about COVID-19 transmission routes and prevention strategies. We then examined the amount of information they received from their healthcare providers regarding the time they need to stop their medication, hospitals they can refer in case of COVID-19 infection, and support they receive from physicians in case of the infection. We also asked about their concerns regarding their disease course relapses and para-clinical evaluations during the COVID-19 pandemic.
According to the results, the enrolled patients had an acceptable level of knowledge regarding the COVID-19 transmission routes (particles, devices, and person-to-person). However, only 75% of the patients believed that wearing face masks and gloves could prevent COVID-19 infection, and 89% of them claimed that they used face masks and gloves. These findings are in accordance with Shaygannejad et al.’s findings (
9). In their study, 96% of the participants believed that face masks were effective in COVID-19 prevention and 82% of them believed that social distancing was necessary. Moreover, near 40% of them told that the disease could be transmitted by animals.
In the current study, 44% of the patients believed that pets could transfer the disease, although there is no evidence for it (
10). Moreover, 97% of the patients claimed that quarantine helped prevent the infection, although only 73% of them followed quarantine rules completely or almost completely. These findings showed that Iranian MS patients were aware of COVID-19 transmission routes, although some of them did not believe in preventive methods.
Only 80% of our patients believed that they had a higher risk of infection than others, showing that they did not have enough information regarding their disease nature and the effects of medications treatments on the immune system. Ignoring preventive rules may expose people to a higher risk of infection. The results also showed that our participants had good knowledge about the outcome of infected cases and COVID-19 symptoms.
These findings show that social networks play a major role in increasing general knowledge about COVID-19 infection, and patients are rely on information they receive from these media.
In the second part of our evaluation, we found that only one-fifth of physicians gave their patients enough information about COVID-19 infection, and near one-third of physicians informed their patients of how to contact them if they suspected to have the disease. Twenty percent of physicians recommended their patients to stop taking medication if they were suspected to have the infection, and nearly half of physicians prescribed immune-boosting supplements. Accordingly, physicians responsible for treating MS patients should give them more information about MS, COVID-19 infection, and how to manage their medication in different stages. Physicians’ lack of communication could be due to overcrowded offices during the COVID-19 epidemic in Iran at the time of writing the manuscript. Furthermore, the Iranian new year holiday caused physicians to have less time to talk with their patients.
As patients with MS receive immunotherapies, they require careful surveillance and should be consulted remotely to obtain comprehensive information without the need for a face-to-face visit. Bonavita et al. (
11) suggested a triage tool, including 10 questions to screen patients with MS, which can be sent using google forms to decrease unnecessary referrals to hospitals.
Physicians could provide online face-to-face visits or consultation sessions to screen suspected cases. In this way, they can keep MS patients away from medical centers during the COVID-19 pandemic and decrease the risk of infection (
11). Physicians could also monitor their patients to ensure that patients use their medication regularly and see if patients need to discontinue their medication or refer to medical centers.
We also found that more than half of the patients were worried about MS-related attacks during the COVID-19 pandemic and that near 80% of them were worried about undergoing MRI evaluation or blood tests or the need for hospitalization. Their concerns regarding these issues appear to be sensible as hospitalization or referral to a laboratory or imaging center predisposes them to a higher risk of infection. As MS patients receive immunosuppressive medication, they become prone to infections and may develop severe symptoms. If patients use digital monitoring, they can tell their physicians whether they had an any attack. Digital monitoring can also help patients decide if hospitalization is needed or they can postpone para-clinical evaluations to prevent patients’ unnecessary referrals to medical centers and reduce the burden for healthcare providers during the COVID-19 pandemic.
The results also revealed that women followed quarantine rules significantly better than men, showing that women care more about their health, although men need to spend more time outside because of their jobs.
Strict preventive methods, including quarantine, are recommended for COVID-19 prevention. During the spread of communicable diseases, quarantine should be considered, as it was used to control SARS in 2003 and influenza (
12). Individuals receiving immunosuppressive medications, such as MS patients, should follow the rules more closely, and family members must provide these patients’ needs to prevent them from leaving the house.
During the current COVID-19 pandemic, all individuals should follow quarantine rules to avoid imposing costs to both patients and the health system. Thus, informing special cases such as MS patients about COVID-19 is crucial, and physicians play a major role in this regard.
This study had some strengths. First, it was the first study on MS patients. Second, the sample size was acceptable. Third, patients from all provinces of Iran were enrolled. Limitations include responder bias, the lack of a comparator group (either healthy individuals or individuals with other chronic autoimmune diseases), and the study’s cross-sectional nature.
5.1. Conclusions
The results showed that Iranian MS patients had good knowledge regarding COVID-19 prevention strategies and transmission routes, while they received less information from their physicians regarding medication termination, referral centers, and physician support in case of COVID-19 suspicion.