Department of Nephrology, Postgraduate Institute of Medical Education and Research, Chandigarh, India.
Department of Rheumatology, Nizam Institute of Medical Sciences, Hyderabad, India.
Lupus. 2021 Jan;30(1):158-164. doi: 10.1177/0961203320962855. Epub 2020 Oct 6.
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.
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.
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.
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.
COVID-19 大流行导致全球医疗服务严重中断。我们进行了这项研究，以评估 COVID-19 大流行对参与全国起始队列的系统性红斑狼疮 (SLE) 患者管理的影响。
对参与起始队列的 SLE 患者进行问卷调查。问题涉及疾病活动的影响、针对 COVID-19 采取的预防措施、COVID-19 的发病率、获得医疗专业人员的困难以及药物的可及性、依从性、对 COVID-19 的恐惧以及参与登记的潜在好处。
共有 1040 名（90%为女性）患者完成了问卷。平均年龄为 27.5±19.1 岁，平均病程为 1.25 年。在此期间，有 24 名（2.3%）患者出现发热（>1 天），其中 1 名患者伴有腹泻和嗅觉丧失等其他症状，但均未发生 COVID-19 感染。262 名（25.2%）患者在此期间出现经济困难，患者报告平均每月额外支出至少 2255.45 印度卢比（30 美元）。由于封锁，378 名（36%）患者报告在获得处方药物方面存在问题。其中，由于无法获得药物，167 名（40%）患者需要改变药物治疗方案。将近 54%的患者在封锁期间错过了预定的随访，由于实验室和医院关闭，37%的患者无法进行检查。在此期间，266 名（25.5%）患者报告 SLE 的各种症状恶化。近 61%的患者认为与起始队列相关联在管理疾病方面帮助他们度过了这段封锁期，因为他们通过及时和频繁的电话咨询、提供药物帮助和定期咨询获得了帮助，减轻了他们的恐惧和焦虑。
当前的 COVID-19 大流行对我们的 SLE 患者产生了巨大影响。患者在药物可获得性、错过药物剂量、面临财务限制以及在大流行期间在医疗保健上花费更多方面遇到困难。
