Antiphospholipid syndrome in rural, remote, and First Nations peoples in the Top End of the Northern Territory, Australia
BACKGROUND: The Northern Territory of Australia has a high proportion of First Nations peoples living in remote communities and a high burden of chronic autoimmune diseases. The epidemiology and clinical outcomes of antiphospholipid syndrome (APS) in First Nations Australians are poorly characterize...
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ftpubmed:oai:pubmedcentral.nih.gov:10772872 2024-02-11T10:03:49+01:00 Antiphospholipid syndrome in rural, remote, and First Nations peoples in the Top End of the Northern Territory, Australia Agbayani, Evangeline Doig, Chris Noutsos, Tina 2023-10-14 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC10772872/ http://www.ncbi.nlm.nih.gov/pubmed/38193060 https://doi.org/10.1016/j.rpth.2023.102227 en eng Elsevier http://www.ncbi.nlm.nih.gov/pmc/articles/PMC10772872/ http://www.ncbi.nlm.nih.gov/pubmed/38193060 http://dx.doi.org/10.1016/j.rpth.2023.102227 © 2023 The Authors https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). Res Pract Thromb Haemost Original Article Text 2023 ftpubmed https://doi.org/10.1016/j.rpth.2023.102227 2024-01-14T01:54:04Z BACKGROUND: The Northern Territory of Australia has a high proportion of First Nations peoples living in remote communities and a high burden of chronic autoimmune diseases. The epidemiology and clinical outcomes of antiphospholipid syndrome (APS) in First Nations Australians are poorly characterized. OBJECTIVES: To determine the epidemiology, presenting features, and outcomes of patients with APS using an 18-year retrospective cohort of newly diagnosed patients presenting to Royal Darwin Hospital (2002-2020). METHODS: Patients admitted to Royal Darwin Hospital with a new incident diagnosis of APS between January 2002 and December 2020 were identified and followed until December 2022, with data on baseline demographics, clinical and laboratory features, and overall survival extracted from electronic and paper medical records. RESULTS: Fifty-three patients with APS were included, of whom 40 (75%) were First Nations and 46 (87%) were female. Thirty (75%) of First Nations patients with APS resided in very remote Australia vs 0 (0%) non–First Nations patients. Eighteen cases (34%) had primary APS, and 35 cases (66%) had secondary APS, most in association with lupus. Eight (15%) cases developed catastrophic APS (CAPS), all in First Nations patients. There were 13 deaths (of which 11 were among First Nations patients). Patients with CAPS had significantly shorter median overall survival (8.3 years from diagnosis), with median survival in non-CAPS patients not reached (P = .003). CONCLUSION: There is a high prevalence of APS in First Nations patients living in very remote Australia admitted for tertiary care in the tropical north of the Northern Territory, Australia. The rate of CAPS in First Nations patients was high, and CAPS was associated with significantly shorter survival. Larger prospective studies are required to inform improved models of care for First Nations and remote Australians living with APS. Text First Nations PubMed Central (PMC) Research and Practice in Thrombosis and Haemostasis 7 8 102227 |
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Original Article Agbayani, Evangeline Doig, Chris Noutsos, Tina Antiphospholipid syndrome in rural, remote, and First Nations peoples in the Top End of the Northern Territory, Australia |
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Original Article |
description |
BACKGROUND: The Northern Territory of Australia has a high proportion of First Nations peoples living in remote communities and a high burden of chronic autoimmune diseases. The epidemiology and clinical outcomes of antiphospholipid syndrome (APS) in First Nations Australians are poorly characterized. OBJECTIVES: To determine the epidemiology, presenting features, and outcomes of patients with APS using an 18-year retrospective cohort of newly diagnosed patients presenting to Royal Darwin Hospital (2002-2020). METHODS: Patients admitted to Royal Darwin Hospital with a new incident diagnosis of APS between January 2002 and December 2020 were identified and followed until December 2022, with data on baseline demographics, clinical and laboratory features, and overall survival extracted from electronic and paper medical records. RESULTS: Fifty-three patients with APS were included, of whom 40 (75%) were First Nations and 46 (87%) were female. Thirty (75%) of First Nations patients with APS resided in very remote Australia vs 0 (0%) non–First Nations patients. Eighteen cases (34%) had primary APS, and 35 cases (66%) had secondary APS, most in association with lupus. Eight (15%) cases developed catastrophic APS (CAPS), all in First Nations patients. There were 13 deaths (of which 11 were among First Nations patients). Patients with CAPS had significantly shorter median overall survival (8.3 years from diagnosis), with median survival in non-CAPS patients not reached (P = .003). CONCLUSION: There is a high prevalence of APS in First Nations patients living in very remote Australia admitted for tertiary care in the tropical north of the Northern Territory, Australia. The rate of CAPS in First Nations patients was high, and CAPS was associated with significantly shorter survival. Larger prospective studies are required to inform improved models of care for First Nations and remote Australians living with APS. |
format |
Text |
author |
Agbayani, Evangeline Doig, Chris Noutsos, Tina |
author_facet |
Agbayani, Evangeline Doig, Chris Noutsos, Tina |
author_sort |
Agbayani, Evangeline |
title |
Antiphospholipid syndrome in rural, remote, and First Nations peoples in the Top End of the Northern Territory, Australia |
title_short |
Antiphospholipid syndrome in rural, remote, and First Nations peoples in the Top End of the Northern Territory, Australia |
title_full |
Antiphospholipid syndrome in rural, remote, and First Nations peoples in the Top End of the Northern Territory, Australia |
title_fullStr |
Antiphospholipid syndrome in rural, remote, and First Nations peoples in the Top End of the Northern Territory, Australia |
title_full_unstemmed |
Antiphospholipid syndrome in rural, remote, and First Nations peoples in the Top End of the Northern Territory, Australia |
title_sort |
antiphospholipid syndrome in rural, remote, and first nations peoples in the top end of the northern territory, australia |
publisher |
Elsevier |
publishDate |
2023 |
url |
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC10772872/ http://www.ncbi.nlm.nih.gov/pubmed/38193060 https://doi.org/10.1016/j.rpth.2023.102227 |
genre |
First Nations |
genre_facet |
First Nations |
op_source |
Res Pract Thromb Haemost |
op_relation |
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC10772872/ http://www.ncbi.nlm.nih.gov/pubmed/38193060 http://dx.doi.org/10.1016/j.rpth.2023.102227 |
op_rights |
© 2023 The Authors https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). |
op_doi |
https://doi.org/10.1016/j.rpth.2023.102227 |
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Research and Practice in Thrombosis and Haemostasis |
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7 |
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8 |
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102227 |
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1790600145545461760 |