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

Sloan, Melanie; Gordon, Caroline; Lever, Elliott; Harwood, Rupert; Bosley, Michael A; Pilling, Mark; Brimicombe, James; Naughton, Felix; Blane, Moira; Walia, Chanpreet; D’Cruz, David

OBJECTIVE: The UK’s shielding guidance for the ‘clinically extremely vulnerable’ (CEV) commenced on 23 March 2020 in response to the 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 shielding concept. Shielding allocations and communications were perceived as inconsistently applied and delivered. Over 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’, yet also increased fear, and the ‘vulnerable’ labelling was perceived by some to damage social- and self-identity. Over 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 during-pandemic quantitative data showed increases in most measures of well-being (which was low at both timepoints) from pre-lockdown, including reductions in the impact of fatigue and pain (Ps < 0.001). CONCLUSION: Shielding classifications and communications were generally positively viewed, although perceived as inconsistently delivered and anxiety-provoking. More frequent positively-framed communication and wellbeing support could benefit all SARD patients. Slower-paced ‘lockdown’ lifestyles may confer health/wellbeing benefits for some people with chronic diseases.