The impact of the COVID-19 pandemic on the medical care and health-care behaviour of patients with lupus and other systemic autoimmune diseases: a mixed methods longitudinal study

Research output: Contribution to journalArticlepeer-review


  • Melanie Sloan
  • Rupert Harwood
  • Elliott Lever
  • Chris Wincup
  • Michael Bosley
  • James Brimicombe
  • Mark Pilling
  • Stephen Sutton
  • Lynn Holloway
  • David D’cruz

Colleges, School and Institutes

External organisations

  • University of Cambridge
  • Patient and Public Involvement in Lupus Research Group, Institute of Public Health, University of Cambridge, Cambridge
  • University College London
  • Louise Coote Lupus Unit, Guys’ and St Thomas’ NHS foundation Trust, London, UK


Objective: To explore the self-reported impact of the COVID-19 pandemic on changes to care and behaviour in UK patients with systemic autoimmune rheumatic diseases, to help ensure that patient experiences are considered in future pandemic planning.

Methods: This was a longitudinal mixed methods study, with a cohort completing baseline surveys in March 2020 and follow-up surveys in June 2020 (N=111), combined with thematic analysis of the LUPUS UK forum and participant interviews (N=28).

Results: Cancellations of routine care and difficulties accessing medical support contributed to some participants deteriorating physically, including reports of hospitalisations. The majority of participants reported that fear of COVID-19 and disruptions to their medical care had also adversely impacted their mental health. Feeling medically supported during the pandemic correlated with multiple measures of mental health and perceptions of care, including the Warwick-Edinburgh Mental Wellbeing Score (r=0.44, p=0.01). Five themes
were identified: 1. Detrimental reduction in care; 2. Disparities in contact and
communication, (medical security vs abandonment sub-theme); 3. Perceived and actual endangerment; 4. The ‘perfect storm’ of reduced clinician ability to help, and increased patient reticence to seek help; and 5. Identifying the patients most vulnerable to reduced medical care.

Conclusion: The diversion of resources away from chronic disease care was perceived by many participants to have caused adverse outcomes. Fear about increased vulnerability to COVID-19 was high, contributing to healthcare-avoidant behaviours. This study also highlights the influence of clinician accessibility and patients feeling medically supported on multiple measures of physical and mental health.


Original languageEnglish
Article numberrkaa072
Number of pages13
JournalRheumatology Advances in Practice
Issue number1
Early online date14 Dec 2020
Publication statusPublished - 25 Jan 2021


  • rheumatology, COVID-19, pandemic, SLE, lupus, systemic autoimmune rheumatic diseases, patient behaviour, psychology, patient care