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Author

Rheumatol Int. 2020 Oct 26. doi: 10.1007/s00296-020-04726-x. Online ahead of print.

Melanie Sloan 1, Michael Bosley 2, Moira Blane 2, Lynn Holloway 2, Colette Barrere 2, David D'Cruz 3, Chanpreet Walia 4, Felix Naughton 5, Paul Howard 4, Stephen Sutton 6, Caroline Gordon 7

Author Information

1 Behavioural Science Group, Institute of Public Health, University of Cambridge, Forvie Site, Robinson Way, Cambridge, CB2 0SR, UK. mas229@medschl.cam.ac.uk.

2 Patient and Public Involvement in Lupus Research Group, Institute of Public Health, University of Cambridge, Cambridge, UK.

3 The Louise Coote Lupus Unit, Guy's and St Thomas', NHS Foundation Trust, London, UK.

4 LUPUS UK, St James House, Romford, Essex, UK.

5 Behavioural and Implementation Science Group, School of Health Sciences, University of East Anglia, Norwich, UK.

6 Behavioural Science Group, Institute of Public Health, University of Cambridge, Forvie Site, Robinson Way, Cambridge, CB2 0SR, UK.

7 Rheumatology Research Group, Institute of Inflammation and Ageing, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK.

Abstract

Lupus is a multi-system autoimmune rheumatic disease with increased morbidity and mortality. Some manifestations are life-threatening with many aspects of living with the disease, difficulties in diagnosis and accessing appropriate medical care, having an impact on quality of life. The disease itself, and these patients' perspectives, are currently poorly understood and under-researched. The LUPUS UK forum of conversations between over 25,000 members provides a rich environment to explore the views of these patients. Conversations on the LUPUS UK online forum were qualitatively explored using virtual ethnography and thematic analysis. The forum itself and positive medical relationships were widely considered to provide a means of support, understanding and validation. Forum members expressed difficulties in diagnosis, disease management, and the psychological and physical impact of living with an unpredictable, poorly understood disease, often with life-changing symptoms. Invalidating personal, social and medical environments were perceived as exacerbating these difficulties. Delays in diagnosis and misdiagnoses were frequently discussed as causing significant damage, especially when symptoms were disbelieved or dismissed. Invalidation was the key theme with further themes of: Uncertainty, Medical (mis)communications and misunderstandings, Navigating health systems and Resilience and support. Although effective care and support was reported by some members, the negative impact of living with an incurable, life-changing disease was often exacerbated by perceived invalidation, uncertainty, and difficulties in multiple areas of members' lives. Improved knowledge of the disease and greater support at all stages of the diagnostic journey could improve outcomes and quality of life for these patients.