From the Department of Clinical Immunology and Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow.
Mahatma Gandhi Missions Medical College, Navi Mumbai, India.
J Clin Rheumatol. 2021 Jan 1;27(1):31-33. doi: 10.1097/RHU.0000000000001681.
The coronavirus disease (COVID-19) pandemic and its subsequent effects on health care systems have significantly impacted the management of chronic rheumatic diseases, including systemic sclerosis (SSc).
In this context, a 25-item anonymized e-survey was posted on the Twitter and Facebook e-groups and pages of various scleroderma organizations and patient communities to assess the problems faced by patients with SSc during the pandemic, with a focus on effects on the disease, drug procurance, continuity of medical care, and prevalent fears among patients.
Of the 291 participants (median age of 55 [43.5-63] years, 93.8% females), limited systemic sclerosis was the most common diagnosis (42.3%). Many patients experienced problems attributable to the COVID-19 pandemic (119, 40.9%), of which 46 (38.7%) required an increase in medicines, and 12 (10.1%) of these needed hospitalizations for disease-related complications. More than one-third (36.4%) were on glucocorticoids or had underlying cardiovascular risks (39%) that would predispose them to severe COVID-19.A significant proportion (38.1%) faced hurdles in procuring medicines or experienced disruption in physiotherapy sessions (24.7%). One-quarter (24.1%) felt it was difficult to contact their specialist, whereas another 7.2% were unable to do so. Contracting COVID-19 was the most prevalent fear (71.5%), followed by infection in the family (61.9%), and a flare of the disease (45.4%). Most respondents preferred teleconsultations (55.7%) over hospital visits in the pandemic period.
The results of the patient survey suggest that the COVID-19 pandemic has affected many patients with SSc and may translate to poorer outcomes in this population in the postpandemic period.
冠状病毒病（COVID-19）大流行及其对医疗体系的后续影响，对包括系统性硬化症（SSc）在内的慢性风湿性疾病的管理产生了重大影响。
在此背景下，我们在各种硬皮病组织和患者社区的 Twitter 和 Facebook 电子群组和页面上发布了一份 25 项匿名电子调查，以评估 COVID-19 大流行期间 SSc 患者面临的问题，重点关注疾病、药物获取、医疗连续性以及患者普遍存在的担忧。
在 291 名参与者中（中位年龄为 55 岁[43.5-63]，93.8%为女性），局限性系统性硬化症是最常见的诊断（42.3%）。许多患者经历了与 COVID-19 大流行相关的问题（119 例，40.9%），其中 46 例（38.7%）需要增加药物治疗，12 例（10.1%）需要住院治疗与疾病相关的并发症。超过三分之一（36.4%）患者正在服用糖皮质激素或存在心血管疾病风险（39%），这使他们易患严重 COVID-19。相当一部分（38.1%）在获取药物方面遇到困难，或经历物理治疗中断（24.7%）。四分之一（24.1%）的患者认为难以联系到他们的专科医生，而另有 7.2%的患者无法联系到他们。感染 COVID-19 是最普遍的担忧（71.5%），其次是家庭成员感染（61.9%）和疾病发作（45.4%）。大多数受访者在大流行期间更喜欢远程咨询（55.7%）而不是去医院就诊。
患者调查结果表明，COVID-19 大流行影响了许多 SSc 患者，可能会导致该人群在大流行后出现更差的结果。
