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

Abstract

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.

Systemic lupus erythematosus in the light of the COVID-19 pandemic: infection, vaccination, and impact on disease management

“…Patients with chronic diseases are prone to more severe COVID-19 and unfavorable outcomes [ 68 ]. Psychological stress due to lockdowns and social distancing has resulted in a rise in anxiety and depression among patients with SLE [ 69 ]. Irregular supply of medications, difficulty in scheduling hospital appointments, and inaccessibility of medical care have further complicated the issue [ 69 ].…”

“…Psychological stress due to lockdowns and social distancing has resulted in a rise in anxiety and depression among patients with SLE [ 69 ]. Irregular supply of medications, difficulty in scheduling hospital appointments, and inaccessibility of medical care have further complicated the issue [ 69 ]. Similar themes emerged from a social media–based study providing real-time data on concerns of patients with AIRDs during the pandemic [ 70 ].…”

Use of telemedicine for follow-up of lupus nephritis in the COVID-19 outbreak: The 6-month results of a randomized controlled trial

“…Many patients had a high level of anxiety regarding their risk of mortality from the infection and supported lockdown/shielding at least in the initial phase of the outbreak. 3 Diversion of resources to COVID-19 might also contribute to adverse physical and mental outcomes of the patients. 4 An alternative option would be to adopt telemedicine (TM) or telehealth, the use of telecommunication technologies to provide medical information and services, to maintain medical care while minimizing exposure.…”

Personalized Motor-Cognitive Exergame Training in Chronic Stroke Patients—A Feasibility Study

“…A possible reason therefore may be that this study took place during the time of the COVID-19 pandemic. This may have influenced the feasibility outcomes—in particular the inclusion and attrition rate—of this study as people were advised to shield and participants as well as investigators may have experienced limited allowance and emotional safety for contacts (Sloan et al, 2021 ). This is supported by the finding that one dropout was caused by the fear of getting infected with the Corona virus at the study center (see section Participants Overview).…”