Sloan Melanie, Gordon Caroline, Lever Elliott, Harwood Rupert, Bosley Michael A, Pilling Mark, Brimicombe James, Naughton Felix, Blane Moira, Walia Chanpreet, D'Cruz David
Department of Public Health and Primary Care, University of Cambridge School of Clinical Medicine, Cambridge.
Rheumatology Research Group, Institute of Inflammation and Ageing, College of Medical and Dental Science, University of Birmingham, Birmingham.
Rheumatol Adv Pract. 2021 Jan 21;5(1):rkab003. doi: 10.1093/rap/rkab003. eCollection 2021.
The shielding guidance in the UK for the clinically extremely vulnerable (CEV) commenced on 23 March 2020 in response to the coronavirus disease 2019 (COVID-19) pandemic. The purpose of this study was to explore the impact of the pandemic and shielding on patients with lupus and related systemic autoimmune rheumatic diseases (SARDs).
This was a mixed-methods cohort study ( = 111) including pre-lockdown baseline surveys (March 2020), follow-up surveys (June 2020) and in-depth interviews during July 2020 ( = 25).
Most participants had a high level of anxiety regarding their mortality risk from COVID-19 and supported the concept of shielding. Shielding allocations and communications were perceived as inconsistently applied and delivered. More than half of those not classified as CEV reported feeling abandoned, at increased risk and with no support. Shielding communications increased feelings of being 'cared about', but also increased fear, and the 'vulnerable' labelling was perceived by some to damage social and self-identity. More than 80% of those classified as CEV stated that the classification and subsequent communications had changed their social-mixing behaviour. Despite many negative impacts of COVID-19 and shielding/lockdown being identified, including isolation, fear and reduced medical care, the quantitative data during the pandemic showed increases in most measures of wellbeing (which was low at both time points) from pre-lockdown, including reductions in the impact of fatigue and pain (-values < 0.001).
Shielding classifications and communications were, in general, viewed positively, although they were perceived as inconsistently delivered and anxiety-provoking by some participants. More frequent positively framed communication and wellbeing support could benefit all SARD patients. Slower-paced lockdown lifestyles might confer health/wellbeing benefits for some people with chronic diseases.
英国针对临床极度脆弱人群（CEV）的防护指南于2020年3月23日开始实施，以应对2019冠状病毒病（COVID-19）大流行。本研究的目的是探讨大流行和防护措施对狼疮及相关系统性自身免疫性风湿病（SARDs）患者的影响。
这是一项混合方法队列研究（n = 111），包括封锁前的基线调查（2020年3月）、随访调查（2020年6月）以及2020年7月期间的深入访谈（n = 25）。
大多数参与者对感染COVID-19导致死亡的风险高度焦虑，并支持防护的概念。人们认为防护措施的分配和传达存在不一致的情况。超过一半未被归类为CEV的参与者表示感到被抛弃、风险增加且没有得到支持。防护措施的传达增加了“被关心”的感觉，但也增加了恐惧，一些人认为“脆弱”的标签损害了社会和自我认同。超过80%被归类为CEV的参与者表示，这种分类及随后的传达改变了他们的社交行为。尽管确定了COVID-19以及防护/封锁带来了许多负面影响，包括隔离、恐惧和医疗护理减少，但大流行期间的定量数据显示，与封锁前相比，大多数幸福感指标（两个时间点的数值都较低）有所增加，包括疲劳和疼痛影响的减轻（p值<0.001）。
总体而言，防护分类和传达受到积极看待，尽管一些参与者认为其传达不一致且引发焦虑。更频繁地进行积极表述的沟通和幸福感支持可能会使所有SARD患者受益。节奏较慢的封锁生活方式可能会给一些慢性病患者带来健康/幸福感益处。
