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Abstract：
OBJECTIVE: 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).
METHODS: This was a mixed-methods cohort study (n = 111) including pre-lockdown baseline surveys (March 2020), follow-up surveys (June 2020) and in-depth interviews during July 2020 (n = 25).
RESULTS: 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 (P-values < 0.001).
CONCLUSIONS: 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.
METHODS: This was a mixed-methods cohort study (n = 111) including pre-lockdown baseline surveys (March 2020), follow-up surveys (June 2020) and in-depth interviews during July 2020 (n = 25).
RESULTS: 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 (P-values < 0.001).
CONCLUSIONS: 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.
摘要：
■英国针对临床极端脆弱人群（CEV）的屏蔽指导于2020年3月23日开始，以应对2019年冠状病毒病（COVID-19）大流行。这项研究的目的是探讨大流行和屏蔽对狼疮和相关系统性自身免疫性风湿病（SARDs）患者的影响。
■这是一项混合方法的队列研究（n=111），包括封锁前的基线调查（2020年3月），后续调查（2020年6月）和2020年7月的深度访谈（n=25）。
■大多数参与者对COVID-19的死亡风险感到高度焦虑，并支持屏蔽的概念。屏蔽拨款和通信被认为不一致地应用和交付。超过一半的未被归类为CEV的人报告感到被遗弃，风险增加，没有支持。屏蔽通信增加了被“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％的被归类为CEV的人表示，分类和随后的交流改变了他们的社交混合行为。尽管发现了COVID-19和屏蔽/封锁的许多负面影响，包括隔离,恐惧和减少医疗服务，大流行期间的定量数据显示，与封锁前相比，大多数福祉指标(这两个时间点都很低)有所增加，包括减少疲劳和疼痛的影响（P值<0.001）。
■屏蔽分类和通信是，总的来说,积极看待,尽管一些参与者认为它们传递不一致且引起焦虑。更频繁的积极框架沟通和健康支持可以使所有SARD患者受益。节奏较慢的封锁生活方式可能会给一些患有慢性病的人带来健康/福祉的好处。
■这是一项混合方法的队列研究（n=111），包括封锁前的基线调查（2020年3月），后续调查（2020年6月）和2020年7月的深度访谈（n=25）。
■大多数参与者对COVID-19的死亡风险感到高度焦虑，并支持屏蔽的概念。屏蔽拨款和通信被认为不一致地应用和交付。超过一半的未被归类为CEV的人报告感到被遗弃，风险增加，没有支持。屏蔽通信增加了被“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％的被归类为CEV的人表示，分类和随后的交流改变了他们的社交混合行为。尽管发现了COVID-19和屏蔽/封锁的许多负面影响，包括隔离,恐惧和减少医疗服务，大流行期间的定量数据显示，与封锁前相比，大多数福祉指标(这两个时间点都很低)有所增加，包括减少疲劳和疼痛的影响（P值<0.001）。
■屏蔽分类和通信是，总的来说,积极看待,尽管一些参与者认为它们传递不一致且引起焦虑。更频繁的积极框架沟通和健康支持可以使所有SARD患者受益。节奏较慢的封锁生活方式可能会给一些患有慢性病的人带来健康/福祉的好处。
