Experiences of Patients With Rheumatic Diseases in the United States During Early Days of the COVID-19 Pandemic

Experiences of Patients With Rheumatic Diseases in the United States During Early Days of the COVID-19 Pandemic
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DOI:
10.1002/acr2.11148
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发表时间:
2020-06-01
影响因子:
3.4
通讯作者:
Katz, Patricia
Katz, Patricia
中科院分区:
其他
文献类型:
--
作者:
Michaud, Kaleb;Wipfler, Kristin;Katz, Patricia

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患有类风湿关节炎(RA)和狼疮等风湿性疾病的患者感染风险增加,并且使用可能增加这种风险的药物治疗,但也被假设有助于治疗COVID-19。我们开始了解COVID-19大流行如何影响美国这些患者的生活。方法全美纵向观察登记中心的参与者于2020年3月25日通过电子邮件回答了一份COVID-19补充问卷,内容包括他们在前两周内的症状、COVID-19检测、医疗保健变化和相关经历。分析比较了诊断、疾病活动性和新出现症状的反应。对可选的自由文本评论字段进行了定性分析。在7061名受邀参与者中,530人回应,RA是最常见的诊断(61%)。11名参与者符合COVID-19筛查标准,其中两人寻求检测未成功。另有六人寻求检测,其中三人成功,所有检测结果均为阴性。不到一半的参与者(42%)报告在前两周内他们的护理发生了变化。定性分析揭示了四个关键主题:应对大流行的情绪、对免疫抑制药物风险的认识、降低COVID-19感染风险的保护措施,以及获得包括羟氯喹在内的风湿病药物的中断。结论许多风湿病患者在治疗2周后,健康状况发生了重大变化,许多患者在没有专业咨询或羟氯喹短缺的情况下改变了药物。随着有关COVID-19潜在治疗方法有效性的证据越来越多,需要努力确保获得风湿性疾病的现有治疗方法。
ObjectivePatients with rheumatic diseases such as rheumatoid arthritis (RA) and lupus have increased risk of infection and are treated with medications that may increase this risk yet are also hypothesized to help treat COVID-19. We set out to understand how the COVID-19 pandemic has impacted the lives of these patients in the United States.MethodsParticipants in a US-wide longitudinal observational registry responded to a supplemental COVID-19 questionnaire by e-mail on March 25, 2020, about their symptoms, COVID-19 testing, health care changes, and related experiences during the prior 2 weeks. Analysis compared responses by diagnosis, disease activity, and new onset of symptoms. Qualitative analysis was conducted on optional free-text comment fields.ResultsOf the 7061 participants invited to participate, 530 responded, with RA as the most frequent diagnosis (61%). Eleven participants met COVID-19 screening criteria, of whom two sought testing unsuccessfully. Six others sought testing, three of whom were successful, and all test results were negative. Not quite half of participants (42%) reported a change to their care in the prior 2 weeks. Qualitative analysis revealed four key themes: emotions in response to the pandemic, perceptions of risks from immunosuppressive medications, protective measures to reduce risk of COVID-19 infection, and disruptions in accessing rheumatic disease medications, including hydroxychloroquine.ConclusionAfter 2 weeks, many participants with rheumatic diseases already had important changes to their health care, with many altering medications without professional consultation or because of hydroxychloroquine shortage. As evidence accumulates on the effectiveness of potential COVID-19 treatments, effort is needed to safeguard access to established treatments for rheumatic diseases.