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

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

doi:10.1093/rap/rkab003

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

Rheumatol Adv Pract. 2021 Jan 21;5(1):rkab003. doi: 10.1093/rap/rkab003. eCollection 2021.

Authors

Affiliations

¹ Department of Public Health and Primary Care, University of Cambridge School of Clinical Medicine, Cambridge.
² Rheumatology Research Group, Institute of Inflammation and Ageing, College of Medical and Dental Science, University of Birmingham, Birmingham.
³ Rheumatology Department, Northwick Park Hospital, London.
⁴ Patient and Public Involvement in Lupus Research Group, Institute of Public Health, University of Cambridge, Cambridge.
⁵ Behavioural and Implementation Science Group, School of Health Sciences, University of East Anglia, Norwich.
⁶ LUPUS UK, St James House, Romford.
⁷ The Louise Coote Lupus unit, Guy's and St Thomas' NHS Foundation Trust, London, UK.

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).

Conclusion: 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.

Keywords: COVID-19; lupus; mixed methods; patient behaviour; patient views; quality of life; rheumatology; shielding; systemic autoimmune rheumatic disease; systemic lupus erythematosus.