Wellbeing and shielding of patients withrheumatic disease on biologic therapy during theearly COVID-19 pandemic: A single centre experience

ABSTRACT

Background/AimsIndividuals on immunosuppressive therapies were among thoseidentified by the UK Department of Health and Chief Medical Officeras clinically extremely vulnerable to COVID-19. Advice on shieldingfrom infection was disseminated by NHS England, primary care andNHS hospital trusts to those identified at highest risk. The BritishSociety for Rheumatology (BSR) developed further risk stratificationguidance specifically focused on autoimmune rheumatic disease. As the UK entered a period of nationwide lockdown on 23rd March 2020, the clinically highly vulnerable group were asked to shield frominfection by staying at home and avoiding any face-to-face contact foran initial period of 12 weeks. The implications of social isolation, disruption to planned medical care and economic consequencesbecame increasingly recognised. This work aimed to understand theexperience and wellbeing of this patient group during week 5 -6 of UKLockdown, as a guide to how we might best adapt services andaddress the needs of this group.MethodsShort semi-structured telephone interviews were conducted with 141patients during week five and six of UK lockdown, between 20th Apriland 1st May 2020. Participants were sampled systematically from thedepartmental biologic therapy database at Wexham Park Hospital, ageneral hospital providing services to a diverse population ofapproximately 450, 000 people in Berkshire and SouthBuckinghamshire.ResultsTelephone interview was conducted with 141 patients prescribedbiologic therapy. Written advice on risk and shielding was received byover 90%. Sixty four percent of respondents were female with amedian age of 56 years. Thirty-nine percent of those interviewed fellwithin highest BSR risk category for whom full shielding was highlyrecommended, yet at the time of interview 51.1% of respondentsreported they had committed to full shielding. Four percent ofrespondents self-identified as key workers and had continued theirusual commitments. Amongst those interviewed, 35% reportedsignificant adverse impact on their emotional and mental wellbeingwithin the first six weeks of UK lockdown. Isolation, uncertainty, limitedphysical exercise and cancellations to planned appointments werecommon themes. Twenty-eight percent of respondents felt theirdisease control had significantly deteriorated during the ongoingpandemic. Due to prevailing anxiety about the impact of immunosuppression on COVID-19 risk, 5% of patients had adjusted theirprescribed therapies without the direct supervision or clinical advice.ConclusionThis study gives initial insights into the behaviours and concerns ofpatients with autoimmune and inflammatory disease on biologictherapy during the first wave of COVID-19 in the UK. Wellbeing anddisease management have considerably suffered for many individuals.Further understanding patient experience may help guide restructuringof rheumatology services in next phase of the UK pandemic.