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COVID-19 and shielding: experiences of UK patients with lupus and related diseases
Melanie Sloan1, Caroline Gordon2, Elliott Lever3
1Department of Public Health and Primary Care, University of Cambridge School of Clinical Medicine, Cambridge.
Insights
The COVID-19 pandemic shielding guidance impacted patients with lupus and autoimmune diseases, causing anxiety but also improving wellbeing measures like fatigue and pain for some. Consistent communication and support are crucial for these vulnerable populations.
Area of Science:
- Rheumatology
- Immunology
- Public Health
Background:
- The coronavirus disease 2019 (COVID-19) pandemic necessitated shielding measures for clinically extremely vulnerable (CEV) individuals in the UK.
- Systemic autoimmune rheumatic diseases (SARDs) patients, including those with lupus, faced unique challenges during the pandemic due to their underlying conditions and potential increased risk.
- Understanding the psychological and practical impacts of shielding on SARDs patients is vital for optimizing support strategies.
Purpose of the Study:
- To explore the impact of the COVID-19 pandemic and associated shielding measures on patients diagnosed with lupus and other SARDs.
- To assess patient perceptions of shielding guidance, communication effectiveness, and its influence on their lives.
- To evaluate changes in wellbeing, fatigue, and pain among SARDs patients during the pandemic.
Main Methods:
- A mixed-methods cohort study involving 111 participants.
- Data collection included pre-lockdown baseline surveys (March 2020) and follow-up surveys (June 2020).
- In-depth interviews were conducted with 25 participants during July 2020 to gather qualitative insights.
Main Results:
- High levels of anxiety regarding COVID-19 mortality risk were reported, with general support for shielding.
- Shielding communications were perceived as inconsistent; non-CEV individuals felt abandoned, while CEV individuals altered social behavior.
- Despite negative impacts like isolation and fear, quantitative data showed improvements in wellbeing, fatigue, and pain among SARDs patients during lockdown (P < 0.001).
Conclusions:
- While shielding classifications were generally viewed positively, inconsistent delivery and anxiety-provoking communications were noted.
- Enhanced, positively framed communication and wellbeing support are recommended for all SARDs patients.
- Slower-paced lockdown lifestyles may offer health and wellbeing benefits for individuals with chronic diseases.
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.
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