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dc.contributor.authorSloan, Melanie
dc.contributor.authorBosley, Michael
dc.contributor.authorBlane, Moira
dc.contributor.authorHolloway, Lynn
dc.contributor.authorBarrere, Colette
dc.contributor.authorD’Cruz, David
dc.contributor.authorWalia, Chanpreet
dc.contributor.authorNaughton, Felix
dc.contributor.authorHoward, Paul
dc.contributor.authorSutton, Stephen
dc.contributor.authorGordon, Caroline
dc.date.accessioned2021-10-28T08:07:46Z
dc.date.available2021-10-28T08:07:46Z
dc.date.issued2020-10-26
dc.date.submitted2020-08-18
dc.identifier.issn0172-8172
dc.identifier.others00296-020-04726-x
dc.identifier.other4726
dc.identifier.urihttps://www.repository.cam.ac.uk/handle/1810/329976
dc.descriptionFunder: University of Cambridge
dc.description.abstractAbstract: 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.
dc.languageen
dc.publisherSpringer Berlin Heidelberg
dc.subjectObservational Research
dc.subjectLupus
dc.subjectPatient views
dc.subjectPatient–physician interaction
dc.subjectQuality of life
dc.subjectMisdiagnosis
dc.subjectHolistic care
dc.title‘But you don’t look sick’: a qualitative analysis of the LUPUS UK online forum
dc.typeArticle
dc.date.updated2021-10-28T08:07:45Z
prism.endingPage732
prism.issueIdentifier4
prism.publicationNameRheumatology International
prism.startingPage721
prism.volume41
dc.identifier.doi10.17863/CAM.77420
dcterms.dateAccepted2020-10-06
rioxxterms.versionofrecord10.1007/s00296-020-04726-x
rioxxterms.versionVoR
rioxxterms.licenseref.urihttp://creativecommons.org/licenses/by/4.0/
dc.contributor.orcidSloan, Melanie [0000-0001-8153-9064]
dc.contributor.orcidBosley, Michael [0000-0003-1096-5650]
dc.contributor.orcidBlane, Moira [0000-0003-4710-466X]
dc.contributor.orcidHolloway, Lynn [0000-0001-6897-8185]
dc.contributor.orcidD’Cruz, David [0000-0002-6983-8421]
dc.contributor.orcidWalia, Chanpreet [0000-0002-6104-3683]
dc.contributor.orcidNaughton, Felix [0000-0001-9790-2796]
dc.contributor.orcidHoward, Paul [0000-0001-7122-1124]
dc.contributor.orcidSutton, Stephen [0000-0003-1610-0404]
dc.contributor.orcidGordon, Caroline [0000-0002-1244-6443]
dc.identifier.eissn1437-160X


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