Manish Rathi1, Parmeshar Singh1, Hayath Peta Bi2, Archana Shivanna3, Chengappa Kavadichanda4, Saumya Ranjan Tripathy5, Janani Parthasarathy6, Sneha Tota7, Supriya Maurya7, Vishnupriya Vijayalekshmi8, D Bhavani2, Avinash Jain9, Ranjan Gupta8, Debashish Danda6, Liza Rajasekhar2, Vir Singh Negi4, Vineeta Shobha3, Bidyut Das5, Amita Aggarwal7. 1. Department of Nephrology, Postgraduate Institute of Medical Education and Research, Chandigarh, India. 2. Department of Rheumatology, Nizam Institute of Medical Sciences, Hyderabad, India. 3. Department of Clinical Immunology and Rheumatology, St John's Medical College Hospital, Bengaluru, India. 4. Department of Clinical Immunology, JIPMER, Puducherry, India. 5. Department of Rheumatology, SCB Medical College, Cuttack, Inida. 6. Department of Clinical Immunology and Rheumatology, Christian Medical College, Vellore, India. 7. Department of Clinical Immunology and Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, India. 8. Department of Rheumatology, All India Institute of Medical Sciences, New Delhi, India. 9. Department of Medicine, Division of Clinical Immunology and Rheumatology, SMS Medical College, Jaipur, India.
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.
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 SLEpatients 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-19infection. 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 SLEpatients. 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.
Authors: Lena M Hassen; Rana A Albarrak; Reem A Albahlal; Dimah K Alsaqabi; Ikhlass M Hassen; Maha H Daghestani; Eman M Alqurtas; Abdulaziz T Alkhalaf; Mohammed K Bedaiwi; Mohammed A Omair; Ibrahim A Almaghlouth Journal: Qual Life Res Date: 2022-07-20 Impact factor: 3.440
Authors: Nevena Rebić; Jamie Y Park; Ria Garg; Ursula Ellis; Ayano Kelly; Eileen Davidson; Mary A De Vera Journal: Arthritis Care Res (Hoboken) Date: 2021-07-05 Impact factor: 5.178