COVID-19 and shielding: experiences of UK patients with lupus and related diseases

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 r...

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Bibliographic Details
Published in:Rheumatology advances in practice 2021-01, Vol.5 (1), p.rkab003-rkab003
Main Authors: Sloan, Melanie, Gordon, Caroline, Lever, Elliott, Harwood, Rupert, Bosley, Michael A, Pilling, Mark, Brimicombe, James, Naughton, Felix, Blane, Moira, Walia, Chanpreet, D’Cruz, David
Format: Article
Language:English
Subjects:
Chronic diseases
Coronaviruses
Health aspects
Lupus
Mortality
Original
Social aspects
Surveys
Systemic lupus erythematosus
United Kingdom
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Summary: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 
ISSN:2514-1775
2514-1775
DOI:10.1093/rap/rkab003