Abstract

Objectives: We aimed to evaluate the difficulties encountered by systemic lupus erythematosus (SLE) patients during the early COVID-19 pandemic and to evaluate their impact on patient mental health. Methods: We conducted a nationwide survey including SLE patients from France, recruited by their treating specialist or through a patient association. The survey was administered online or in paper form between November 2020 and April 2021 and included questions aiming at evaluating the difficulties encountered during the early COVID-19 pandemic (March to August 2020). The impact on mental health was evaluated using the Hospital Anxiety and Depression Scale (HADS) and the Post-Traumatic Stress Disorder (PTSD) Checklist for DSM-5 (PCL-5). Results: 536 SLE patients (91.9% women) of mean age 50 (±14.1) years responded to the survey. The main reported difficulties were issues regarding access to medical care (n = 136, 25.4%) or hydroxychloroquine treatment (n = 98/389, 25.2%), the loss of employment (n = 85/349, 24.4%), and financial difficulties (n = 75/536, 11%). In 328 patients with complete mental health assessments, 161 (47.2%) screened positive for anxiety, 141 (41.2%) screened positive for depressive syndrome, and 128 (38.7%) screened positive for PTSD. The multivariate analysis showed that female sex (OR = 4.29 [95%CI: 1.39–13.24]), financial issues (OR = 2.57 [1.27–5.22]), and difficulties accessing medical care (OR = 2.15 [1.26–3.69]) or hydroxychloroquine treatment (OR = 1.90 [1.06–3.40]) were independently associated with a positive screening for PTSD. Conclusions: The COVID-19 pandemic resulted in a severe burden in SLE patients, including difficulties accessing care and treatment along with high psychological distress. Better understanding these difficulties will allow for better prevention and care in times of crisis.

Highlights

  • The emergence of SARS-CoV-2 in late 2019 led to a worldwide pandemic affecting hundreds of millions of people and is responsible for an excess mortality of at least 5 million people worldwide [1]

  • Financial difficulties and difficulties accessing medical care were significantly associated with a positive screening for depression (Table 3)

  • This survey including 536 patients with systemic lupus erythematosus (SLE) in France demonstrates the difficulties encountered during the early SARS-CoV-2 pandemic

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Summary

Introduction

The emergence of SARS-CoV-2 in late 2019 led to a worldwide pandemic affecting hundreds of millions of people and is responsible for an excess mortality of at least 5 million people worldwide [1]. Few data were available concerning the risk factors for COVID-19-related mortality. Glucocorticoids and immunosuppressive drugs were considered major risk factors of severe COVID-19 [2]. Lupus Erythematosus (SLE) were considered at risk and needed to be extremely careful during the SARS-CoV-2 pandemic. These patients were recommended to self-limit their normal and social activities to decrease their risk of contracting COVID-19, a strategy known as shielding. An early (but unfounded) craze for hydroxychloroquine (HCQ) as a potential COVID-19 treatment led to a rush toward its limited stock, making

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