Patients with lupus – and related systemic autoimmune rheumatic diseases, (or SARDs) – have experienced the UK’s shielding guidance as inconsistent, and many who felt they should have shielded were not advised to do so, according to new research on the experiences of patients with SARDs during the pandemic.
Patients with Lupus and related diseases suffer from complex multi-system disease, often with unpredictable flares and frequent use of immunosuppression medication. Both patients and clinicians expected that COVID-19 would have a significant impact on the wellbeing of patients with SARDs and this study aimed to detail how COVID-19 and the UK’s shielding guidance affected the patients in the study.
The research integrates findings from two online surveys, with 111 respondents, an analysis of COVID-19 posts on the LUPUS UK online forum and 25 in-depth interviews with SARDs patients. 51% of survey respondents reported that they were advised to shield. The research team, led by Melanie Sloan, at the University of Cambridge, also included SARDs patients and specialist clinicians.
Although some survey participants received prompt communication of their risk-group in late March 2020, there were often reports of long delays, and others reported receiving no information at all (22%) or conflicting information (10%).
For those who were advised to shield, the shielding communications increased feelings of being ‘cared about’, yet also increased their fear. The ‘vulnerable’ labelling was widely disliked and perceived by some to damage their social- and self-identity, with some participants reporting that they felt ‘blamed’ for lockdown restrictions:
“It makes you feel like you’re a burden on society, …message that has been sent out by the government, that we’ve all gone into lockdown to help shielded and the old people…We’re made to feel ‘othered’, we are something else… incredibly isolating.” (Participant, 60s)
Over 80% of those classified as Clinically Extremely Vulnerable (CEV), and therefore advised to shield, stated that the classification and subsequent communications had changed their social-mixing behaviour.
Many participants estimated their mortality risk from COVID-19 as very high and expressed great anxiety during interviews and in forum conversations. Anxiety was often discussed as being increased by official correspondence identifying vulnerability ‘in black and white’, or conversely
through not having received specific or sufficient information:
“I felt afraid and quite panicked which led to a massive flare which lasted 6 weeks…I don’t know if I will ever feel safe again.” (Participant, 40s).
Over half of those not classified as CEV, and therefore not advised to shield, reported feeling abandoned, at increased risk and with no support. Non-shielders who felt they should have been allocated to the shielding group reported increased fears around potential exposure:
“I really can’t afford to lose my job but I really am so scared of dying!!!…” (Forum, 40s).
Despite many negative impacts of COVID-19 and shielding/lockdown being identified, including isolation, fear and reduced medical care, the research also revealed increases in most measures of wellbeing (although well-being was low at both timepoints) from pre-lockdown, including reductions in the impact of fatigue and pain. The researchers surmised that this was potentially from the slower paced ‘lockdown lifestyles’ and reduced pressure being more suited to the limitations imposed by these chronic diseases:
“I am in a much better place both mentally and physically than before lockdown…I have been able to focus on me…If I don’t feel like doing something…no guilt, shame, embarrassment” (Participant, 20s)
Melanie Sloan, the researcher at the University of Cambridge who leads the LISTEN research programme on the experiences of lupus patients, explained: “As with our previous studies, again we found a wide disparity in the communication and level of support received by lupus and related disease patients. Shielding was very well supported but the allocations omitted many people who felt they should have been included, increasing feelings of abandonment and potentially placing them at greater risk. Overall wellbeing scores were low, highlighting the need for greater support post pandemic too. We strongly advocate for patients with lupus and other diseases that cause similar symptoms to be included in the support planned for ‘long covid’ patients, as the shared symptoms of severe fatigue, pain, cognitive impairment and others, have received very limited support, treatment or understanding previously.”
Professor Caroline Gordon, co-author and Lupus specialist clinician and researcher at the University of Birmingham, said: “Lupus is often a serious multi-system disease that can be unpredictable and hard to live with at the best of times. This study highlights the importance of prompt, clear, consistent communications between clinicians, the government and these patients. Unfortunately, we found that this did not always occur during the first wave of the pandemic. In particular, there was often insufficient or absent advice and support provided for those not meeting official shielding criteria yet still having significant chronic autoimmune disease that could increase their risks.
“The priorities for patients during the ongoing pandemic are to keep the disease well-controlled by continuing therapy, unless advised to change their treatment plan by their specialist team,” said Professor Gordon, “Patients can reduce the risk of getting COVID-19 infection by following existing recommendations and they should seek prompt advice if their disease features change.”
This important research has highlighted the unmet needs of patients with lupus and related systemic autoimmune rheumatic disorders during the pandemic. Now that the COVID vaccinations are being rolled out nationally, there is an urgent need to ensure further identification of patients who may have been omitted from initial shielding classifications, yet are at risk due to their disease and/or medications. Those patients should also be prioritised for the vaccine. There is also a need to understand if this group of patients are more susceptible to the newly described ‘long COVID’ syndrome and how to manage their condition.”
– Professor David D’Cruz – co-author and Lupus specialist, Guys’ and St Thomas’ NHS Foundation Trust, London
Read the research
M Sloan, C Gordon, E Lever, R Harwood, M Bosley, M Pilling, J Brimicombe, F Naughton, M Blane, C Walia, D D’Cruz: ‘The impact of COVID-19 and the UK’s shielding guidance on patients with lupus and related systemic autoimmune rheumatic diseases’ in Rheumatology Advances in Practice, 22 January 2021, https://doi.org/10.1093/rap/rkab003
This research in the media
What’s it like having lupus? what’s it like to be a doctor diagnosing/managing lupus, especially during the pandemic? Lupus researchers Coco Barrerre, expert patient and Dr Chris Wincup, rheumatologist, explain to on BBC Radio Cambridgeshire on 4 March 2021: Breakfast on BBC Radio Cambridgeshire – Louise Hulland 04/03/2021 – BBC Sounds
Lupus: ‘No-one seemed willing to treat me during Covid’ – BBC News online article about the experiences of lupus patients during the COVID-19 pandemic
Melanie discusses her findings with Dotty McLeod on BBC Radio Cambridgeshire on 9 February 2021
Watch Melanie on BBC Look East on 9 February 2021
Read this blog published by the British Society for Rheumatology
Read more from this research team
Lucy Lloyd, Communications Manager, Primary Care Unit, University of Cambridge