Impact of the COVID-19 pandemic on patients with systemic lupus erythematosus: Observations from an Indian inception cohort

Abstract

Introduction The ongoing pandemic of COVID-19 has led to severe disruption of healthcare services worldwide. We conducted this study to assess the impact of COVID-19 pandemic on the management of Systemic Lupus Erythematosus (SLE) patients who were enrolled in the nation-wide inception cohort. Methods A questionnaire was administered to the SLE patients enrolled in the inception cohort. Questions related to the effect on disease activity, preventive measures adopted against COVID-19, the incidence of COVID-19, hardships faced in getting access to health care professionals and availability of medicines, adherence, fear of COVID-19 and the potential benefits of being part of the registry. Results A total of 1040 (90% females) patients completed the questionnaire. The mean age was 27.5 ± 19.1 years and the mean disease duration was 1.25 years. Twenty-Four (2.3%) patients had developed fever (>1 day) during this period, including one patient with additional symptoms of diarrhoea and anosmia, however, none of the patients developed COVID-19 infection. 262 patients (25.2%) reported financial difficulty during this period and patients reported an average excess expenditure of at least 2255.45 INR ($30) per month. 378 patients (36%) reported problems in getting their prescribed medicines due to lockdown. Of these, 167 (40%) patients needed to change their medication schedule due to this non-availability. Almost 54% of patients missed their scheduled follow up visits during the lockdown period and 37% of patients were unable to get their investigations done due to closure of laboratories and hospitals. 266 patients (25.5%) reported worsening of various symptoms of SLE during this period. Almost 61% patients felt confident that being associated with the inception cohort had helped them in managing their disease better during this period of lockdown as they received help in the form of timely and frequent telephonic consults, assistance in making the medicines available, and regular counselling resulting in abetment of their fears and anxieties. Conclusion The current COVID-19 pandemic has made a huge impact on our SLE patients. Patients faced difficulty in the availability of medicines, missed the doses of medicines, had financial constraints, and spent more money on health during the pandemic.

Prevention of infective complications in systemic lupus erythematosus: A systematic literature review for the APLAR consensus statements

“…During the COVID‐19 pandemic, studies in Asia showed that only 0.1%‐0.2% of SLE patients had documented infection with COVID‐19 85‐89 (Table 5). Together with other case series and reports, there is a total of 18 reported SLE patients with COVID‐19 infection 90‐94 .…”

COVID-19 in patients with systemic lupus erythematosus: lessons learned from the inflammatory disease

“…Interestingly, only D 1 8 2 X X2 patients in this study contracted SARS-CoV-2 and both had a mild COVID-19 course. 230 Similarly, in a study of 1040 patients with SLE in India, over 50% of patients had missed their follow-up appointments, 37% were unable to perform routine laboratory exams, 40% needed to change their medications due to lack of availability, and 25% presented financial difficulties during the lockdown period, 231 suggesting additional sources of stressors experienced by these patients.…”

Clinical and bioethical implications of health care interruption during the COVID-19 pandemic: A cross-sectional study in outpatients with rheumatic diseases

“…The authors reported that up to 41% of the patients referred difficulty in obtaining hydroxychloroquine and 40.7% of the patients referred disease flare. Non-adherence to treatment has been extensively described in patients with rheumatic diseases during the COVID-19 pandemic and has been attributed to limited access to medications as well as to patients' fears related to immunosuppressive drugs [3,13,19,25,26,28,[30][31][32].…”