Experience and impact of the COVID-19 pandemic in patients with systemic lupus erythematosus in France

INTRODUCTION: The SARS-CoV-2 pandemic and its successive lockdowns are considered as anxious periods, especially for immunocompromised patients such as those with systemic lupus erythematosus (SLE). In addition to the personal and professional difficulties linked to the pandemic, care supply or access to treatment (such as hydroxychloroquine, HCQ) may have affected these patients. The aim of this work was to assess the experience and the impact of these difficulties endured by patients with SLE during the COVID-19 pandemic. PATIENTS ET MÉTHODES: Anonymous survey conducted in France and DOM-TOM departments via paper or online forms (SurveyLegend® platform). Patients with SLE were recruited with the support of the French Association of Lupus (AFL +) as well as through their treating specialist. Socio-demographic data were collected, and the impact of lockdowns was assessed by validated questionnaires aimed at assessing perceived stress (Perceived Stress scale 10), anxiety and depression (Hospital Anxiety and Depression Scale, HADS) and the occurrence post-traumatic stress disorder (PTSD Checklist for DSM-5, PCL-5). Participants consented to the use of their data and the survey methodology was validated by an independent ethics committee (CE-2020-151). RÉSULTATS: Five hundred thirty-six questionnaires were collected from SLE patients between November 2020 and April 2021. The median age was 50 years [IQR: 39–60] and 91.9% of patients were female. Their disease had progressed for a median of 17 [9–25] years, 77% were treated with HCQ, 50% with corticosteroids and 33% with immunosuppressive treatments. During the pandemic, 85 patients ceased their professional activity (technical unemployment n = 55, dismissal n = 30). Financial difficulties were reported by 76 patients (15.9%), with a significant predominance among those who interrupted their professional activity(3)6.9% vs. 9.3%, p < 0.0001). Of the patients treated with HCQ, 23.9% (92/385) had difficulty accessing the HCQ responsible for its interruption in 58 patients (median duration 7 [3–17] days). Perceived stress was significant (PSS-10 ≥ 27/40) for 11.8% of patients. An anxiety or depressive syndrome was detected in 47.6% and 41.5% of patients, respectively. Scores compatible with post-traumatic stress disorder were found in 39% of patients. Female sex (OR = 4.50 [95% CI: 1.28–15.8]), the presence of financial difficulties (OR = 2.71 [1.30–5.6]) and access to HCQ (OR = 2.07 [1.16–3.69]) during the pandemic were significantly associated with the presence of post-traumatic stress disorder. CONCLUSION: The COVID-19 pandemic has caused many difficulties for patients with LS, with a high prevalence of mental disorders. These were in particular anxiety or depressive syndromes and states of post-traumatic stress associated with difficulties in accessing treatment or changes in professional activity.