{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,12]],"date-time":"2026-10-12T16:24:46Z","timestamp":1791822286174,"version":"4.3.4"},"reference-count":46,"publisher":"Wiley","issue":"7","license":[{"start":{"date-parts":[[2024,5,15]],"date-time":"2024-05-15T00:00:00Z","timestamp":1715731200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100008897","name":"Janssen Pharmaceutica","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100008897","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000940","name":"Arthritis Australia","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000940","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100023360","name":"St Vincent Hospital Melbourne","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100023360","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["GTN 1176538"],"award-info":[{"award-number":["GTN 1176538"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100012599","name":"Bethlehem Griffiths Research Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100012599","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100001203","name":"GlaxoSmithKline Australia","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100001203","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100001782","name":"University of Melbourne","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100001782","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100001232","name":"Royal Australasian College of Physicians","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100001232","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000948","name":"Pfizer Australia","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000948","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100002491","name":"Bristol-Myers Squibb","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100002491","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100023332","name":"Scleroderma Victoria","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100023332","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100004326","name":"Bayer","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100004326","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["acrjournals.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Arthritis Care &amp; Research"],"published-print":{"date-parts":[[2024,7]]},"abstract":"<jats:sec><jats:title>Objective<\/jats:title><jats:p>The importance of early integration of palliative care in the management of complex multisystem diseases has been recognized. In this study, we aimed to quantify the need for specialist palliative care in patients with systemic sclerosis (SSc).<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Using data from 875 patients enrolled in the Australian Scleroderma Cohort Study, we defined the need for palliative care as a high symptom burden at two or more consecutive study visits, at \u226550% of overall study visits, or at the study visit immediately before death. Symptoms of interest included breathlessness, fatigue, pain, depression, anxiety, constipation, and diarrhea. Logistic regression analyses evaluated the association between individual symptoms and SSc manifestations. Linear regression analysis evaluated the relationship between palliative care needs and quality of life (QoL) and function.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Almost three\u2010quarters of patients (72.69%) met the threshold for specialist palliative care needs. Severe fatigue (54.17%) was most common, followed by breathlessness (23.66%) and severe constipation (21.14%). Concurrent severe symptoms were frequently observed. Severe breathlessness (coefficient [coef] \u22127.95, <jats:italic>P<\/jats:italic> &lt; 0.01) and pain (coef \u22127.70, <jats:italic>P<\/jats:italic> &lt; 0.01) were associated with the largest reductions in physical QoL. Severe mood symptoms were associated with the greatest reduction in mental QoL (coef \u221212.91, <jats:italic>P<\/jats:italic> &lt; 0.01). Severe pain (coef 0.56, <jats:italic>P<\/jats:italic> &lt; 0.01), breathlessness (coef 0.49, <jats:italic>P<\/jats:italic> &lt; 0.01), and mood symptoms (coef 0.40, <jats:italic>P<\/jats:italic> &lt; 0.01) had a significant impact on function.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>SSc is frequently associated with multiple severe symptoms that may be amenable to palliative care intervention. Given the strong association between symptom burden and impaired QoL targeted, effective symptom management in parallel with standard\u2010of\u2010care treatments may improve overall patient outcomes.<\/jats:p><\/jats:sec>","DOI":"10.1002\/acr.25325","type":"journal-article","created":{"date-parts":[[2024,3,15]],"date-time":"2024-03-15T00:22:43Z","timestamp":1710462163000},"page":"964-972","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":13,"title":["Quantifying the Need for Specialist Palliative Care Management in Patients With Systemic Sclerosis"],"prefix":"10.1002","volume":"76","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4636-729X","authenticated-orcid":false,"given":"Laura","family":"Ross","sequence":"first","affiliation":[{"name":"University of Melbourne, Parkville, and St Vincent's Hospital  Fitzroy Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julie","family":"McDonald","sequence":"additional","affiliation":[{"name":"University of Melbourne, Parkville, and St Vincent's Hospital  Fitzroy Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dylan","family":"Hansen","sequence":"additional","affiliation":[{"name":"St Vincent's Hospital Melbourne  Fitzroy Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4140-2711","authenticated-orcid":false,"given":"Jessica","family":"Fairley","sequence":"additional","affiliation":[{"name":"University of Melbourne, Parkville, and St Vincent's Hospital  Fitzroy Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carolyn","family":"Wicks","sequence":"additional","affiliation":[{"name":"St Vincent's Hospital Melbourne  Fitzroy Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susanna","family":"Proudman","sequence":"additional","affiliation":[{"name":"University of Adelaide and Royal Adelaide Hospital  Adelaide South Australia Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer","family":"Walker","sequence":"additional","affiliation":[{"name":"Flinders Medical Centre  Bedford Park South Australia Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joanne","family":"Sahhar","sequence":"additional","affiliation":[{"name":"Monash Health and Monash University  Clayton Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gene\u2010Siew","family":"Ngian","sequence":"additional","affiliation":[{"name":"Monash Health and Monash University  Clayton Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lauren","family":"Host","sequence":"additional","affiliation":[{"name":"Fiona Stanley Hospital  Murdoch Western Australia Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wendy","family":"Stevens","sequence":"additional","affiliation":[{"name":"St Vincent's Hospital Melbourne  Fitzroy Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer","family":"Philip","sequence":"additional","affiliation":[{"name":"The Royal Melbourne Hospital, Parkville, Victoria, Australia, St Vincent's Hospital Melbourne, Fitzroy, Victoria, Australia, Peter MacCallum Cancer Centre, Melbourne Victoria, Australia and University of Melbourne  Parkville Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mandana","family":"Nikpour","sequence":"additional","affiliation":[{"name":"University of Melbourne, Parkville, Victoria, Australia, University of Sydney School of Public Health, Sydney, NSW, Australia and Royal Prince Alfred Hospital  Camperdown NSW Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2024,5,15]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.080281"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1136\/ard.2007.075721"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1002\/art.23524"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/kex410"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/ken331"},{"issue":"18","key":"e_1_2_8_7_1","first-page":"e895","article-title":"2022 AHA\/ACC\/HFSA guideline for the management of heart failure: a report of the American College of Cardiology\/American Heart Association Joint Committee on Clinical Practice Guidelines","volume":"145","author":"Heidenreich PA","year":"2022","journal-title":"Circulation"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1164\/rccm.202202-0399ST"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(23)00129-1"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jacc.2022.05.019"},{"key":"e_1_2_8_11_1","unstructured":"Palliative care.World Health Organization. Accessed 26 September 2023.https:\/\/www.who.int\/health-topics\/palliative-care"},{"issue":"9","key":"e_1_2_8_12_1","first-page":"CD012780","article-title":"The effectiveness and cost\u2010effectiveness of hospital\u2010based specialist palliative care for adults with advanced illness and their caregivers","volume":"9","author":"Bajwah S","year":"2020","journal-title":"Cochrane Database Syst Rev"},{"key":"e_1_2_8_13_1","doi-asserted-by":"publisher","DOI":"10.1097\/SPC.0000000000000317"},{"key":"e_1_2_8_14_1","doi-asserted-by":"publisher","DOI":"10.1002\/art.40027"},{"key":"e_1_2_8_15_1","doi-asserted-by":"publisher","DOI":"10.1177\/2397198320915042"},{"key":"e_1_2_8_16_1","doi-asserted-by":"publisher","DOI":"10.1002\/ejhf.1240"},{"key":"e_1_2_8_17_1","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis-2013-204424"},{"issue":"2","key":"e_1_2_8_18_1","first-page":"202","article-title":"Scleroderma (systemic sclerosis): classification, subsets & pathogenesis","volume":"15","author":"LeRoy EC","year":"1988","journal-title":"J Rheumatol"},{"key":"e_1_2_8_19_1","doi-asserted-by":"publisher","DOI":"10.1177\/1073191111411667"},{"key":"e_1_2_8_20_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0885-3924(96)00274-6"},{"key":"e_1_2_8_21_1","doi-asserted-by":"publisher","DOI":"10.1002\/art.24730"},{"key":"e_1_2_8_22_1","doi-asserted-by":"publisher","DOI":"10.1097\/00005650-199206000-00002"},{"key":"e_1_2_8_23_1","doi-asserted-by":"publisher","DOI":"10.1002\/art.1780230202"},{"key":"e_1_2_8_24_1","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.110225"},{"key":"e_1_2_8_25_1","doi-asserted-by":"publisher","DOI":"10.1177\/0269216319854264"},{"key":"e_1_2_8_26_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.berh.2021.101707"},{"key":"e_1_2_8_27_1","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/kez417"},{"key":"e_1_2_8_28_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa1903076"},{"key":"e_1_2_8_29_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2213-2600(20)30318-0"},{"key":"e_1_2_8_30_1","doi-asserted-by":"publisher","DOI":"10.1093\/cvr\/cvz200"},{"key":"e_1_2_8_31_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12931-020-01459-0"},{"key":"e_1_2_8_32_1","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/keac444"},{"key":"e_1_2_8_33_1","doi-asserted-by":"publisher","DOI":"10.1183\/13993003.04307-2020"},{"key":"e_1_2_8_34_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12904-016-0119-2"},{"key":"e_1_2_8_35_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2009.02.025"},{"key":"e_1_2_8_36_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jacc.2022.04.057"},{"key":"e_1_2_8_37_1","doi-asserted-by":"publisher","DOI":"10.1093\/eurheartj\/ehac237"},{"key":"e_1_2_8_38_1","doi-asserted-by":"publisher","DOI":"10.1111\/ene.14248"},{"key":"e_1_2_8_39_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2013.11.009"},{"key":"e_1_2_8_40_1","doi-asserted-by":"publisher","DOI":"10.3389\/fcvm.2022.878428"},{"key":"e_1_2_8_41_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamaneurol.2019.4992"},{"key":"e_1_2_8_42_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10741-020-10011-7"},{"key":"e_1_2_8_43_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2022.01.017"},{"key":"e_1_2_8_44_1","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2016.0330"},{"key":"e_1_2_8_45_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2016.12.344"},{"key":"e_1_2_8_46_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.amjmed.2016.08.046"},{"key":"e_1_2_8_47_1","doi-asserted-by":"publisher","DOI":"10.3233\/JPD-212742"}],"container-title":["Arthritis Care &amp; Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/acrjournals.onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/acr.25325","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,2]],"date-time":"2025-10-02T14:37:45Z","timestamp":1759415865000},"score":1,"resource":{"primary":{"URL":"https:\/\/acrjournals.onlinelibrary.wiley.com\/doi\/10.1002\/acr.25325"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,5,15]]},"references-count":46,"journal-issue":{"issue":"7","published-print":{"date-parts":[[2024,7]]}},"alternative-id":["10.1002\/acr.25325"],"URL":"https:\/\/doi.org\/10.1002\/acr.25325","archive":["Portico"],"relation":{},"ISSN":["2151-464X","2151-4658"],"issn-type":[{"value":"2151-464X","type":"print"},{"value":"2151-4658","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,5,15]]},"assertion":[{"value":"2023-11-24","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-03-13","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-05-15","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}