{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,19]],"date-time":"2026-03-19T01:05:19Z","timestamp":1773882319509,"version":"3.50.1"},"reference-count":36,"publisher":"Wiley","issue":"11","license":[{"start":{"date-parts":[[2021,10,6]],"date-time":"2021-10-06T00:00:00Z","timestamp":1633478400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Int J of Rheum Dis"],"published-print":{"date-parts":[[2021,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Aim<\/jats:title><jats:p>Despite the effectiveness and availability of urate\u2010lowering therapies (ULT), we continue to see a number of advanced cases of tophaceous gout in the Pacific Islander and M\u0101ori population in Western Sydney. Although the high prevalence and increased severity of gout in this cohort has been well documented, there has been little qualitative research undertaken in Australia into the lived experience of this group of people. It is this gap in the research that our study aimed to address.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Participants were recruited from the rheumatology clinics at Westmead and Blacktown Hospitals. Those eligible to participate were Pacific Islander and M\u0101ori patients with tophaceous gout currently living in the Western Sydney Local Health District (WSLHD). Data collection took the form of 10 semi\u2010structured interviews, which were subsequently transcribed verbatim. A thematic analysis of the data was then performed.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Thematic analysis identified 6 key themes: lack of understanding of the disease and its potential effects; missed opportunities for intervention and disjointed care; chronic reliance upon corticosteroids; trivialization of gout as a nuisance illness; the substantial financial impact of chronic illness; and the all\u2010consuming nature of severe gout.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>The human cost of severe tophaceous gout in this cohort is immense. All 10 participants exemplified the disease's devastating social effects. We propose 4 key recommendations: improved education regarding diagnosis and management; immediate prescription of ULT at first presentation; a lower threshold for out\u2010of\u2010hospital rheumatologist referral; and improved follow\u2010up through a nurse\u2010 and pharmacist\u2010led collaborative gout management program.<\/jats:p><\/jats:sec>","DOI":"10.1111\/1756-185x.14222","type":"journal-article","created":{"date-parts":[[2021,10,8]],"date-time":"2021-10-08T13:43:13Z","timestamp":1633700593000},"page":"1394-1401","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["An enquiry into the crippling gout affecting Pacific Islander and M\u0101ori men in Western Sydney"],"prefix":"10.1111","volume":"24","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9102-1736","authenticated-orcid":false,"given":"William","family":"Coleman","sequence":"first","affiliation":[{"name":"Faculty of Medicine and Health The University of Sydney Sydney NSW Australia"},{"name":"South Western Sydney Clinical School The University of New South Wales Sydney NSW Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David","family":"Spencer","sequence":"additional","affiliation":[{"name":"Faculty of Medicine and Health The University of Sydney Sydney NSW Australia"},{"name":"Department of Rheumatology Westmead Hospital Sydney NSW Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2182-1815","authenticated-orcid":false,"given":"Peter","family":"Wong","sequence":"additional","affiliation":[{"name":"Faculty of Medicine and Health The University of Sydney Sydney NSW Australia"},{"name":"Department of Rheumatology Westmead Hospital Sydney NSW Australia"},{"name":"Rural Clinical School Coffs Harbour Campus The University of New South Wales Sydney NSW Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nicholas","family":"Manolios","sequence":"additional","affiliation":[{"name":"Faculty of Medicine and Health The University of Sydney Sydney NSW Australia"},{"name":"Department of Rheumatology Westmead Hospital Sydney NSW Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2021,10,6]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jare.2017.04.008"},{"key":"e_1_2_10_3_1","unstructured":"Western Sydney Local Health District. About Us [homepage on the Internet]. NSW Government [cited 24 March 2020]. Available from:https:\/\/www.wslhd.health.nsw.gov.au\/About\u2010Us"},{"key":"e_1_2_10_4_1","unstructured":"Australian Bureau of Statistics. Census of population and housing 2016: Cultural diversity: Local Government Areas: Blacktown Cumberland Parramatta The Hills Shire: Selected person characteristics: ANC1P ancestry first response [data online]. 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