eprintid: 10142194 rev_number: 12 eprint_status: archive userid: 608 dir: disk0/10/14/21/94 datestamp: 2022-01-20 13:54:54 lastmod: 2022-01-20 13:54:54 status_changed: 2022-01-20 13:54:54 type: article metadata_visibility: show creators_name: Sloan, M creators_name: Gordon, C creators_name: Harwood, R creators_name: Lever, E creators_name: Wincup, C creators_name: Bosley, M creators_name: Brimicombe, J creators_name: Pilling, M creators_name: Sutton, S creators_name: Holloway, L creators_name: D'Cruz, D title: 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 ispublished: pub divisions: UCL divisions: B02 divisions: C10 divisions: D17 keywords: COVID-19, SLE, lupus, pandemic, patient behaviour, patient care, psychology, rheumatology, systemic autoimmune rheumatic diseases note: VC The Author(s) 2020. Published by Oxford University Press on behalf of the British Society for Rheumatology. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited. abstract: Objective: The aim was 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 in accessing medical support contributed to some participants deteriorating physically, including reports of hospitalizations. 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 was correlated with multiple measures of mental health and perceptions of care, including the Warwick-Edinburgh mental well-being score (r = 0.44, P = 0.01). Five themes were identified: detrimental reduction in care; disparities in contact and communication (medical security vs abandonment sub-theme); perceived and actual endangerment; the perfect storm of reduced clinician ability to help and increased patient reticence to seek help; and 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 health-care-avoidant behaviours. This study also highlights the influence of clinician accessibility and patients feeling medically supported on multiple measures of physical and mental health. date: 2021 date_type: published official_url: https://doi.org/10.1093/rap/rkaa072 oa_status: green full_text_type: pub pmcid: PMC7798562 language: eng primo: open primo_central: open_green verified: verified_manual elements_id: 1847169 doi: 10.1093/rap/rkaa072 pii: rkaa072 lyricists_name: Wincup, Christopher lyricists_id: CWINC43 actors_name: Wincup, Christopher actors_id: CWINC43 actors_role: owner full_text_status: public publication: Rheumatology Advances in Practice volume: 5 number: 1 article_number: rkaa072 event_location: England issn: 2514-1775 citation: Sloan, M; Gordon, C; Harwood, R; Lever, E; Wincup, C; Bosley, M; Brimicombe, J; ... D'Cruz, D; + view all <#> Sloan, M; Gordon, C; Harwood, R; Lever, E; Wincup, C; Bosley, M; Brimicombe, J; Pilling, M; Sutton, S; Holloway, L; D'Cruz, D; - view fewer <#> (2021) 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. Rheumatology Advances in Practice , 5 (1) , Article rkaa072. 10.1093/rap/rkaa072 <https://doi.org/10.1093/rap%2Frkaa072>. Green open access document_url: https://discovery.ucl.ac.uk/id/eprint/10142194/1/The%20impact%20of%20the%20COVID-19%20pandemic%20on%20the%20medical%20care%20and%20health-care%20behaviour%20of%20patients%20with%20lupus%20and%20other%20systemic%20.pdf