The impact of the COVID-19 Pandemic on Patients with Chronic Rheumatic Diseases: A Study in 15 Arab Countries

doi:10.21203/rs.3.rs-40892/v1

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Research Article

The impact of the COVID-19 Pandemic on Patients with Chronic Rheumatic Diseases: A Study in 15 Arab Countries

https://doi.org/10.21203/rs.3.rs-40892/v1

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Journal Publication

published 05 Sep, 2020

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posted 10 Jul, 2020

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Aim. To evaluate the impact of the Coronavirus Disease 2019 pandemic (COVID-19) on the access to rheumatology care for patients with chronic rheumatic diseases (CRD) in the Arab countries.

Method. A web-based cross-sectional survey was designed by the Arab Adult Arthritis Awareness group (AAAA) consisting of 16 rheumatologists representing countries from the Arab League of Associations for Rheumatology (ArLAR), and was validated by the ArLAR scientific committee. The survey was disseminated through social media and patients' associations' channels between May 8 and May 22, 2020. The steering committee developed recommendations to improve the care of patients with CRD during the COVID-19 pandemic.

Results. A total of 2163 patients were included in the analysis; 72% were females; mean age was 40 years (SD 11.9). The Levant, the Gulf, and North Africa contributed almost equally to the sample. The pandemic had a significant negative impact on rheumatology visits in 82% of cases, on access to hydroxychloroquine (47%), and on chronic medication persistency (28%). The negative impact on rheumatology visits was associated with female gender, country, medication non-persistency, isolation due to COVID-19, and impact on mental health. Sixty-one patients (2.8%) stated that they had COVID-19, 5% said that a close contact was infected, and 47% were in isolation because of COVID-19.

Conclusion. The current study highlights the deleterious consequences of the COVID-19 pandemic on the continuity of rheumatology care. Therefore, an action plan, including establishing a telemedicine platform, securing drug availability, and promoting medication persistence through the appropriate communication channels, is strongly recommended.

Rheumatology

Access to care

Adherence

Persistency

COVID-19

The Coronavirus Disease 2019 (COVID-19) has emerged in December 2019 in Wuhan, China, to quickly become a global outbreak and a significant public health issue (1,2). On January 30, 2020, the World Health Organization (WHO) declared COVID-19 a public health emergency of international concern(3), and, on March 20, 2020, due to the devastating number of new cases reported globally, WHO declared it as a pandemic (4). At the time of drafting this manuscript (June 5, 2020), the WHO reported more than 6.5 million COVID-19 cases and 387 155 deaths (5).

COVID-19 is caused by a novel coronavirus, the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) that can cause illness ranging from the common cold to the SARS. To date, no antiviral treatment or vaccine has been explicitly recommended. Therefore, applying preventive measures to control the infection is the most critical intervention. In consequence, on top of its significant public health impact, the pandemic had a major influence on social interactions and global economies, as countries lockdowns and social distancing measures were imposed by governments worldwide (6).

Patients living with chronic rheumatic diseases (CRD) require an additional consideration with regards to this pandemic. Many of these patients are immunocompromised and generally vulnerable to infection. Whether they have a higher risk of infection with SARS-CoV-2 is uncertain (7–12), and, although several recommendations were developed worldwide (13–17), strong evidence is lacking to guide treatment decisions. Moreover, difficulty to access the rheumatology clinic drove some patients to self-modify their treatment (18), which put them, along with the significant stress factor, at high risk of CRD flare. Furthermore, since some rheumatology drugs are thought to have potential activity against SARS-CoV-2, such as chloroquine, hydroxychloroquine (HCQ), anti-Interleukin (IL) 6 agents, anti-IL1 agents, and Janus Kinase inhibitors, a drug shortage was witnessed in many countries, making these essential drugs inaccessible to the rheumatology patients who need them (19–21).

In the Arab countries, a special interest group, the Arab Adult Arthritis Awareness group (AAAA), consisting of 16 rheumatologists representing 14 countries from the Arab League of Associations for Rheumatology (ArLAR) (22) was formed in 2019 with the mission to improve patient awareness about CRD. Since the beginning of the COVID-19 pandemic, the group has spread awareness and issued guidance to the Arab patients with CRD, through its vast network of social media and connections with individuals and patients’ associations. However, the impact of the COVID-19 pandemic on patients with CRD remains poorly understood. In this regard, the AAAA network offers a unique opportunity to investigate this impact, concerning access to rheumatology care, to chronic medication as well as other significant components.

Objectives

The primary objective of the study was to evaluate the impact of the COVID-19 pandemic on the access to rheumatology care for patients with CRD in the Arab countries.

The secondary objectives were to assess the impact of the pandemic on mental health, on patients’ infection with SARS-CoV-2, on patients’ attitudes towards telemedicine, on sources of information about COVID-19, and to develop recommendations for an action plan for improving the rheumatic care of patients during the pandemic.

A steering committee, formed among the AAAA members, designed a 15-items web-based cross-sectional survey on Google form, in English. The survey was translated by the AAAA members to Arabic and French and validated in the three languages by the ArLAR scientific committee. The survey design was conducted following the Checklist for Reporting Results of Internet E-Surveys (CHERRIES) guidelines (23).

The survey consisted of 15 closed-ended questions and covered five areas: demographic characteristics, impact of COVID-19 on rheumatology care (visits to the rheumatologist, self-interruption of chronic treatment (medication persistency), HCQ shortage, precautions used), direct impact on patients’ personal life (personal or close- contact infection with SARS-Cov2, isolation due to COVID-19, impact on mental health and on income), attitude towards telemedicine and sources of information about COVID- 19 (Supplementary data).

A pilot test performed in the three langages, on ten rheumatology patients in each language, evaluated clarity, acceptability, and timing. The survey was clearly understood, well accepted, and required 3 to 4 minutes to complete.

The survey instrument was made accessible through a shortened link. It was advertised to the Arab patients with CRD through the ArLAR social media platforms (Facebook, Twitter, Instagram) and the AAAA network, between May 8 and May 22, 2020. It was named “HANDLING” on social media (How Are the rheumatology patieNts DeaLING with the COVID-19 pandemic).

After the analysis of the survey's results, the steering committee developped a set of recommendations for an action plan to improve the care of patients with CRD during the COVID-19 pandemic.

Consent to participate and ethical considerations

The patients viewed the invitation to participate in social media. Clicking on the button "fill out the form" was considered an equivalent to consent to participate in the survey. Confidentiality of personal information was maintained throughout the study by making participants' information anonymous. The study was approved by the Saint- Joseph University Ethics Committee (number CEHDF 1653).

Statistical analysis

For the analysis, the countries of residence were grouped into three regions: Levant (Iraq, Jordan, Lebanon, Palestine, Syria), Gulf (Bahrain, Kuwait, Oman, Qatar, Kingdom of Saudi Arabia (KSA), Oman, United Arab Emirates (UAE)) and North Africa (Algeria, Egypt, Libya, Morocco, Sudan, Tunisia).

Continuous variables were expressed as mean and standard deviation and categorical variables as numbers and percentages. Comparison of the patients' characteristics and responses between the Arab countries was performed using the Pearson chi-square or Fisher test for the categorical variables and the T-test or ANOVA for the continuous variables.

Univariate and multivariable logistic regression analyses were conducted to identify factors associated with the following dependant variable: access to the rheumatology clinic, mental impact of COVID-19 (both transformed into binary variables), and personal infection with SARS-CoV-2. All independent variables with a p-value ˂ 0.1 in the univariate analysis were taken into account in the multivariable logistic regression analysis; p-values <0.05 were accepted as statistically significant. All statistical analyses were performed using SPSS v25.0 (IBM).

Descriptive analysis of the HANDLING study patients (Table 1)

The link to the survey in the three languages was clicked on 3749 times. A total of 2190 patients participated in the survey and completed the questionnaire, 1971 in Arabic 175 in French and 44 in English. Five responses with missing data and 22 responses from non-Arab countries were eliminated. In total, 2163 responses were analyzed (Figure 1: Flowchart of the study participants).

The mean age of participants was 40.0 years (SD 11.9). Seventy-two percent were females. Around half of the participants were unemployed (51.1%), and around a third were full-time employed. Thirty-four percent were from the Levant, 31% were from the Gulf, and 30% were from North Africa. Age and gender were similar across the three regions (p=0.814 and p=0.863, respectively).

When asked about their attitude towards telemedicine, 98.8% said that they would accept a teleconsultation (50% through the internet and 48.8% through a telephone contact).

Also, to get information about COVID-19, the patients relied mostly on social media (73%), followed by television (51%). They used newspapers as a source of information in 8% and radio in 6% only. They relied on their HCP for information in 30% of cases and their friends and family in 20%.

Impact of COVID-19 on patients and rheumatic diseases' management (Table 2)

Impact on the rheumatology visits

The COVID-19 pandemic had a significant negative impact on rheumatology visits, on the access to HCQ and on chronic medication persistency. In univariable analysis, the impact on rheumatology visits was associated with the country of residence (p<0.001), the region of residence (p<0.001), the medication persistency (p<0.001), the access to HCQ (p<0.001). It was also associated with the use of precautions (p<0.001), the use of a mask (p=0.006), the personal infection with SARS-CoV-2 (p=0.002) or a close contact infection with SARS-CoV2 (p=0.005), the isolation due to COVID-19 (p<0.001), the impact on mental health (p<0.001), the impact on income (p=0.015), and the acceptance of teleconsultation (p=0.009). Other variables such as age, gender, and occupation were not associated with the impact on the rheumatology visit. In multivariable analysis (Table 3), the gender (females had a higher negative impact, p=0.008), the region (highest impact in the Gulf and North Africa, lowest in the Levant, p<0.001), the medication non- persistency (p<0.001), the acceptance of teleconsultation (p=0.006), the isolation due to COVID-19 (p=0.002) and the negative impact on mental health (p=0.018) remained associated with the negative impact on rheumatology visits

Impact on Mental health

The pandemic had an impact on mental health in 73% of the participants (minor in 48%, major in 25%). In univariable analysis, the impact on mental health was associated with the region of residence (highest in North Africa, p<0.001), the negative impact on rheumatology visits (p<0.001), the medication non-persistency (p<0.001), the decreased access to HCQ (p<0.001), the use of precautions (p<0.001), the use of mask (p<0.001), the personal infection with SARS-CoV-2 (p=0.024) and the contact infection with SARS- CoV-2 (p=0.007), the isolation due to COVID-19 (p<0.001) and the negative impact on income (p<0.001). In multivariable analysis (Table 4), all remained significantly associated, except for the close contact infection with SARS-CoV-2.

Personnal infection with SARS-COV2

Sixty-one patients (2.8%) stated that they were infected with SARS-CoV-2, 5% reported that a close contact was infected, and 47% were in isolation because of COVID-19. The infection with SARS-CoV-2 was statistically correlated with the country of residence (p=0.006). Among the 61 cases, 28 were from Iraq, 12 from KSA, 9 from Morocco, 6 from Egypt, 2 from Algeria, and 1 from UAE. The infection was also associated with the precautions used during the visit to the rheumatologist (p=0.011), with the close contact infection (p<0.0001), the personal isolation due to COVID-19 (p=0.004). the impact on mental health (p=0.024) and on the visit to the rheumatologist (p=0.005). In multivariable analysis, the country (p=0.041), the close contact infection with SARS-CoV-2 (p<0.001) and the negative impact on mental health (p=0.038) remained associated with the personal infection.

Impact on other components

The impact on the patients’ income was reported in 57% of the participants (slightly in 30%, significantly in 27%).

Regarding the precautions that the patients used when visiting the rheumatologist, 75.8% stated that they wore masks, and 48.2% wore gloves. However, 10% indicated that they took no precautions at all.

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.

The HANDLING study highlights the deleterious consequences of the COVID-19 pandemic on the continuity of rheumatology care, the persistence on chronic medication, and the patients' mental health, all key predictors of disease prognosis. Therefore, an action plan, including establishing a telemedicine platform, securing drug availability, and promoting medication persistence through the appropriate communication channels is strongly recommended.

Authors’ contribution

NZ designed the study, contributed to patients’ recruitement, to social media campaign, conducted the analysis, drafted the manuscript.

LK participated in the study design, contributed to patients’ recruitement, managed the social media campaign, and critically reviewed the manuscript.

IH participated in the study design, contributed to patients’ recruitement, to social media campaign, participated in the analysis and critically reviewed the manuscript.

NA, HH, WH, FA, MR and BM contributed to patients’ recruitement, to social media campaign and critically reviewed the manuscript.

All the authors contributed substantially to the work, revised the manuscript critically, approved the submitted version, and agree to be accountable for all aspects of the work.

Acknowledgment: The authors thank the members of the AAAA group (Drs Lina Kibbi, Hussein Halabi, Nizar Abdulateef, Sima Abu al Saoud, Fatemah Abutiban, Nasra al Adhoubi, Chafia Dahou Makhloufi, Mervat Eissa, Samar al Emadi, Wafa Hamdi, Ihsane Hmamouchi, Leyla Kazkaz, Basel Masri, Khaled al Naqbi, Manal el Rakawi, Nelly Ziadé) and Dr Bassel el Zorkany for helping in patient recruitment. A special acknowledgment to

the ArLAR scientific committee for reviewing the protocol and to Pr Thurayya Arayssi for reviewing the manuscript.

Conflict of interest: The authors declare no conflict of interest related to this study.

Funding : None

Ethics

The study complies with the Declaration of Helsinki
The Ethics Committee of Saint-Joseph University, Beirut has approved the research protocol (CEHDF 1653)

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Table 1. Characteristics of the 2163 participants in the survey

		All participants
Number		2163
Age, mean (SD)		40.0 (11.9)
Females	n (%)	1564	(72.3)
Occupation n (%)
- Full-time employed		631	(29.2)
- Part-time employed		178	(8.2)
- Self-employed		187	(8.6)
- At home		1105	(51.1)
Countries n (%)
- Iraq		539	(24.9)
- KSA		480	(22.2)
- Egypt		283	(13.1)
- Morocco		155	(7.2)
- Algeria		137	(6.3)
- Kuwait		117	(5.4)
- Lebanon		91	(4.2)
- Jordan		78	(3.6)
- Tunisia		60	(2.8)
- UAE		34	(1.6)
- Syria		12	(0.6)
- Libya		11	(0.5)
- Palestine		11	(0.5)
- Oman		10	(0.5)
- Qatar		6	(0.3)
- Other		28	(1.3)
Regions n (%)
- Levant		731	(33.8)
- Gulf		671	(31.0)
- North Africa		649	(30.0)

Table 2. Impact of COVID-19 pandemic on patients with chronic rheumatic diseases

Impact of COVID-19 pandemic

Type of impact

Impact on rheumatology visit

Not affected

371

17.2

I can see my rheumatologist only in emergencies

511

23.6

I can only have a remote contact with my rheumatologist

625

28.9

It is impossible to see my rheumatologist

578

26.7

Impact on access to Hydroxychloroquine (HCQ)

No impact

872

52.8

Shortage of HCQ

297

Difficulty to access HCQ

481

29.2

Impact on persistency on chronic medication

No impact

1495

69.1

I stopped all medication because of the fear of infection

4.5

I stopped some medication because of the fear of infection

177

8.2

I stopped some medication because of drug shortage

317

14.7

Impact on mental health

No impact

511

23.6

Minor effect

1044

48.3

Major effect

540

25.0

Impact on income

Not affected

821

38.0

Slightly affected

657

30.4

Significantly affected

589

27.2

Personal infection with SARS-Cov-2

Yes

2.8

Contact infection with SARS-Cov-2

Yes

106

4.9%

Personal isolation due to COVID-19

Yes

1009

46.6%

Table 3. Factors associated with a negative impact of the COVID-19 pandemic on the patient’s visit to the rheumatologist

	OR*	95% CI		p-value
Female Gender	1.53	1.12	2.09	0.008
Region
North Africa	1			<0.001
Levant	1.66	1.13	2.43
Gulf	0.77	0.51	1.18
Medication non persistence	3.90	2.08	7.30	<0.001
Isolation due to COVID-19	1.57	1.17	2.13	0.003
Mental impact of COVID-19	1.49	1.07	2.07	0.018
Accepting a teleconsultation	0.27	0.08	0.93	0.006

* After adjusting on: HCQ difficulty, Mask, Precautions, Personal COVID infection, Contact COVID infection, Impact on income, Impact on mental health

Table 4. Factors associated with a negative mental impact of the COVID-19 pandemic on patients with chronic rheumatic diseases

	OR*	95% CI		p-value
Region
North Africa	1			<0.001
Levant	2.42	1.65	3.56
Gulf	1.73	1.16	2.56
Positive personal infection with SARS-CoV-2	4.93	1.38	17.61	0.014
Positive isolation due to COVID-19	2.45	1.86	3.25	<0.001
More precautions during the rheumatology visit	2.19	1.15	4.20	0.006
Less visits to the rheumatologist	1.97	1.29	2.99	0.017
Difficulty of access to Hydroxychloroquine	1.86	1.34	2.59	<0.001
Negative impact on income	1.28	.90	1.80	0.014
Medication non persistence	0.36	0.16	0.84	<0.001

* After adjusting on Accept teleconsultation, Mask, Contact COVID infection

Table 5. Recommendations for an action plan to improve the care of patients with chronic rheumatic diseases

Concept

Suggestion

Telemedicine

Establish a reliable telemedicine platform to maintain the continuity of care for patients with rheumatic diseases

Drug persistence

Increase patient awareness about the need to maintain chronic treatment unless advised otherwise by the rheumatologist

Drug availability

Increase government awareness about the need to maintain chronic treatment and avoid drug shortage

Mental health

Acknowledge and address the significant mental impact and its possible association with disease flares

Precautions

Increase awareness about the necessity to use additional precautions during the visit to the rheumatologist (masks in public places are being mandatory by law in most countries)

Communication

Use social media for disseminating general guidance to reach the maximum of patients

Encourage the establishment and registration of patients' associations and groups

HANDLINGSupplementaryData.pdf
Supplementary data – Survey

PDF

Journal Publication

published 05 Sep, 2020

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posted 10 Jul, 2020

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The impact of the COVID-19 Pandemic on Patients with Chronic Rheumatic Diseases: A Study in 15 Arab Countries

Status:

Journal Publication

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Abstract

Figures

Introduction

Objectives

Methods

Consent to participate and ethical considerations

Statistical analysis

Results

Impact on the rheumatology visits

Impact on Mental health

Personnal infection with SARS-COV2

Impact on other components

Discussion

Conclusions

Declarations

Authors’ contribution

Ethics

References

Tables

Table 1. Characteristics of the 2163 participants in the survey

Table 4. Factors associated with a negative mental impact of the COVID-19 pandemic on patients with chronic rheumatic diseases

Table 5. Recommendations for an action plan to improve the care of patients with chronic rheumatic diseases

Supplementary Files

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Journal Publication

Version 1