Patient Perspectives on the Effect of the SARS-CoV-2 Pandemic on Patients With Systemic Sclerosis

An International Patient Survey

Latika Gupta, MD, DM; Rajat Kharbanda, MD; Vishwesh Agarwal, MBBS; Durga Prasanna Misra, MD, DM, MRCP, FRCP; Vikas Agarwal, MD, DM, FRCP


J Clin Rheumatol. 2021;27(1):31-33. 

In This Article

Abstract and Introduction


Background: The coronavirus disease (COVID-19) pandemic and its subsequent effects on health care systems have significantly impacted the management of chronic rheumatic diseases, including systemic sclerosis (SSc).

Methods: In this context, a 25-item anonymized e-survey was posted on the Twitter and Facebook e-groups and pages of various scleroderma organizations and patient communities to assess the problems faced by patients with SSc during the pandemic, with a focus on effects on the disease, drug procurance, continuity of medical care, and prevalent fears among patients.

Results: Of the 291 participants (median age of 55 [43.5–63] years, 93.8% females), limited systemic sclerosis was the most common diagnosis (42.3%). Many patients experienced problems attributable to the COVID-19 pandemic (119, 40.9%), of which 46 (38.7%) required an increase in medicines, and 12 (10.1%) of these needed hospitalizations for disease-related complications. More than one-third (36.4%) were on glucocorticoids or had underlying cardiovascular risks (39%) that would predispose them to severe COVID-19.

A significant proportion (38.1%) faced hurdles in procuring medicines or experienced disruption in physiotherapy sessions (24.7%). One-quarter (24.1%) felt it was difficult to contact their specialist, whereas another 7.2% were unable to do so. Contracting COVID-19 was the most prevalent fear (71.5%), followed by infection in the family (61.9%), and a flare of the disease (45.4%). Most respondents preferred teleconsultations (55.7%) over hospital visits in the pandemic period.

Conclusion: The results of the patient survey suggest that the COVID-19 pandemic has affected many patients with SSc and may translate to poorer outcomes in this population in the postpandemic period.


High Indirect Morbidity in Systemic Sclerosis During the COVID-19 Pandemic

The coronavirus disease (COVID-19) pandemic has led to a perceived heightened risk of infection in patients with autoimmune rheumatic diseases, including systemic sclerosis (SSc). Interstitial lung disease in SSc lends a higher risk of hospitalization and ventilator requirement due to COVID-19 pneumonia.[1] Worsening of the SSc due to virus-triggered cytokine release syndrome is another concern.[2] Besides, the emerging evidence of COVID-19–induced endotheliopathy raises the possibility of a higher risk of severe illness in SSc, a disease with widespread endothelial dysfunction inherent to the condition.[3] Managing disease flares would require higher doses of immunosuppression and its subsequent complications. Moreover, the reported early development of cardiovascular comorbidities in SSc may incur a heightened risk of adverse outcome due to COVID-19.[4,5]

Working out the logistics of drug procurance and infusions can be challenging amid confinement. Furthermore, prevalent anxiety and fears from the uncertain and unique situation pose a risk for worsened mental health, including severe depression.[6] Besides, the high suicide rates in SSc raise serious concerns for a condition-triggered accentuation.[7] On the other hand, staying indoors in warm interiors could reduce the effect of Raynaud phenomenon and digital ulcers due to reduced cold exposure. Thus, there is a concerning lack of clarity on the impact of the virus on the disease.

In this context, we conducted an anonymized electronic survey to assess the problems faced by patients with SSc during the pandemic situation with a focus on the disease condition, continuity of medical care, and prevalent fears in the survey population.