The current study showed a significant negative impact of the COVID-19 pandemic on patients with CRD. The pandemic influenced negatively the visits to the rheumatologist, the medication persistency, and the access to HCQ. It also had a significant negative influence on mental health and income. All these substantial impacts suggest an indirect deleterious effect of the pandemic on the control and management of CRD, which may be more significant than the potential direct impact of the infection (24).
The negative impact on the rheumatology visits was different according to the regions, which reflects a difference in healthcare systems and possible differences in the duration and strictness of the application of the quarantine measures. Also, the important association with non-persistency in medication (OR=3.9) highlights the importance of the contact with the rheumatologist to ensure a continuity of chronic treatment, which is major factor for better disease outcomes. The absence of association with personal infection in
the multivariable analysis may be due to the low number of COVID-29 cases, but may also reflect the lower impact of the direct SARS-CoV-2 infection compared to the indirect effects.
The young age of participants (40 years) reflected the profile of social media users, rather than the usual older age reported in studies on patients with CRD (10,25). In fact, according to the Arab Social Media Report (26), 64.3% of social media users were aged less than 30 years. On the other hand, the gender of participants (72% females) rather reflected the profile of patients with CRD (10,25). The same report indicated that 32% of social media users were females, whereas the published cohorts of patients with CRD reported a female prevalence of 72% (10,27).
Around 60% of our population were from three countries: Iraq, KSA, and Egypt. This high contribution reflects the large populations in these countries. They account for 173 million inhabitants among the 333 million inhabitants in the ArLAR countries (52%).
The percentage of patients infected with SARS-CoV-2 in our sample was low (2.8%). Although there was most probably a selection bias towards less severe cases, this low prevalence is in line with previous publications. In a cohort of 3591 of CRD patients from Madrid, a city that was severely affected by the pandemic, 123 COVID-19 cases were reported (3.4%)(27), and hospital admissions related to COVID-19 occurred in 54 patients (1.36%) (25).
The most used source of information about COVID-19 was social media. This was most probably biased towards overestimation since the survey was conducted mainly on social media. However, it highlights the importance of this communication channel when there's a need to convey general guidance to the patients. Facebook is the most used platform in the Arab countries, with 156 million users in 2017 (half of them based in Egypt, KSA, and Algeria), a mean penetration rate of 39%, and an estimation of one out of 5 users checking their account regularly. The most used language is Arabic, as was observed in our survey(26).
Based on the survey's results, the steering committee developed recommendations for an action plan to improve the care of patients with CRD during the pandemic (Table 5). The committee highlighted the need for a reliable telemedicine platform to maintain the continuity of care for patients with CRD, as these patients will probably suffer more from the lack of proper follow-up than from the SARS-CoV-2 infection itself. In this regard, medication persistence should also be strongly recommended, by raising awareness among the patients, but also among the other stakeholders, such as the governments, who should work to avoid drug shortage. Also, the issue of mental health impact should not be neglected, as it may be a significant trigger for CRD flares, in addition to its direct effect on the patients. Moreover, the precautions during the physical visits to the rheumatology clinic should be emphasized, since, for now, only these preventive measures are effective to halt the spreading of the pandemic. Finally, all communication channels should be used to disseminate general guidance to the patients. In particular, social media constitutes an important channel due to its widespread availability, ease of use, and low cost. Nevertheless, efforts should be made to raise public awareness about information authenticity and the avoidance of fake news. Also, the establishment and registration of patients' associations should be encouraged for that purpose.
The study has some limitations. The questionnaire was developed de novo by the steering committee, based on the available literature. However, it was validated by an independent scientific committee and pilot-tested successfully for readability, acceptability, and timing.
Also, the study was cross-sectional, covering a period where the pandemic had already reached its peak in some countries, whereas it was still in the ascending part of the curves in others. Therefore, the responses reflect the status in each country in a particular time frame of the pandemic.
Besides, the data presented in this study were self-reported and partly dependent on the participants' honesty and recall ability; thus, they may carry subjectivity and recall bias. Moreover, duplicate data, although very unlikely, cannot be ruled out. However, not
collecting personal identification data was a choice that the authors had to make it to favor anonymity.
Despite these limitations, the current study provides valuable information about the impact of COVID-19 on the care of patients with CRD. It has gathered significant information from 2163 patients across 15 Arab countries within 15 days. It was disseminated in three languages, catching the broadest audience in the region. The sample was representative of the Arab countries, with a balanced contribution from the main regions, i.e., the Levant, the Gulf, and North Africa.