{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,12]],"date-time":"2026-10-12T16:25:10Z","timestamp":1791822310171,"version":"4.3.4"},"reference-count":50,"publisher":"Oxford University Press (OUP)","issue":"2","license":[{"start":{"date-parts":[[2025,6,2]],"date-time":"2025-06-02T00:00:00Z","timestamp":1748822400000},"content-version":"vor","delay-in-days":152,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Bethlehem Griffiths Research Foundation and St Vincent\u2019s Hospital Research Endowment Fund"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2025,3,14]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Objectives<\/jats:title>\n                  <jats:p>SSc is a complex, multiorgan disease, associated with the early onset of significant symptoms, impaired quality-of-life and increased mortality due to cardiopulmonary disease. While palliative care could potentially impact the quality of life of patients and caregivers, there is currently no evidence that examines the role or efficacy of palliative care in SSc. This study describes the model of care provided in a clinic of early, integrated palliative care for patients with advanced SSc and their caregivers at a tertiary hospital.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>A prospective audit of the palliative care clinic\u2019s model of care was conducted during its first 12 months. Descriptive data quantified which aspects of care the patients and caregivers engaged with.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>Between 01\/07\/2023 and 01\/07\/2024, 24 patients received 52 clinic reviews. Disease-directed management was changed for 50% of patients. Pharmacological management was prescribed for 88%. Psychological assessment and support was provided for 96% of patients and caregivers, while social support assessment was conducted for 100%. The majority of patients (88%) accepted serious illness discussion, while 58% engaged in a prognostic discussion. Advance care planning discussions were common (83%), while 42% of patients completed an advance care directive and 46% completed a medical power of attorney. Informal multidisciplinary team discussion occurred for 83% of patients.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusion<\/jats:title>\n                  <jats:p>This clinic provided disease-orientated, multidisciplinary care alongside symptom management, psychosocial support and serious illness communication. The high uptake of key tasks signals a previously unmet palliative care need and suggests this model of care may be acceptable to patients and caregivers.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/rap\/rkaf052","type":"journal-article","created":{"date-parts":[[2025,6,2]],"date-time":"2025-06-02T14:27:28Z","timestamp":1748874448000},"source":"Crossref","is-referenced-by-count":5,"title":["Early, integrated systemic sclerosis palliative care for patients and their caregivers: description of a new model of care"],"prefix":"10.1093","volume":"9","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4115-7875","authenticated-orcid":false,"given":"Julie","family":"McDonald","sequence":"first","affiliation":[{"name":"Respiratory and Sleep Medicine Department, St Vincent\u2019s Hospital Melbourne , Melbourne, VIC,","place":["Australia"]},{"name":"Palliative Care Department, St Vincent\u2019s Hospital Melbourne , Melbourne, VIC,","place":["Australia"]},{"name":"Department of Medicine, University of Melbourne, St Vincent\u2019s Hospital , Melbourne, VIC,","place":["Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carolyn","family":"Wicks","sequence":"additional","affiliation":[{"name":"Palliative Care Department, St Vincent\u2019s Hospital Melbourne , Melbourne, VIC,","place":["Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4636-729X","authenticated-orcid":false,"given":"Laura","family":"Ross","sequence":"additional","affiliation":[{"name":"Department of Medicine, University of Melbourne, St Vincent\u2019s Hospital , Melbourne, VIC,","place":["Australia"]},{"name":"Department of Rheumatology, St Vincent\u2019s Hospital Melbourne , Melbourne, VIC,","place":["Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2025,6,2]]},"reference":[{"key":"2025060501414133400_rkaf052-B1","doi-asserted-by":"crossref","first-page":"1182","DOI":"10.1002\/art.30277","article-title":"Life expectancy, standardized mortality ratios, and causes of death in six rheumatic diseases in Hong Kong, China","volume":"63","author":"Mok","year":"2011","journal-title":"Arthritis Rheum"},{"key":"2025060501414133400_rkaf052-B2","doi-asserted-by":"crossref","first-page":"1067","DOI":"10.1002\/art.40027","article-title":"Early mortality in a multinational systemic sclerosis inception cohort","volume":"69","author":"Hao","year":"2017","journal-title":"Arthritis Rheumatol"},{"key":"2025060501414133400_rkaf052-B3","doi-asserted-by":"crossref","first-page":"29","DOI":"10.1136\/ard-2024-226430","article-title":"EULAR recommendations for the treatment of systemic sclerosis: 2023 update","volume":"84","author":"Del Galdo","year":"2025","journal-title":"Ann Rheum Dis"},{"key":"2025060501414133400_rkaf052-B4","doi-asserted-by":"crossref","first-page":"1559","DOI":"10.1093\/rheumatology\/ken331","article-title":"A systematic comparison of fatigue levels in systemic sclerosis with general population, cancer and rheumatic disease samples","volume":"47","author":"Thombs","year":"2008","journal-title":"Rheumatology (Oxford)"},{"key":"2025060501414133400_rkaf052-B5","doi-asserted-by":"crossref","first-page":"768","DOI":"10.3899\/jrheum.080281","article-title":"Quality of life in patients with systemic sclerosis compared to the general population and patients with other chronic conditions","volume":"36","author":"Hudson","year":"2009","journal-title":"J Rheumatol"},{"issue":"Suppl 113","key":"2025060501414133400_rkaf052-B6","first-page":"53","article-title":"Determinants of health-related quality of life in a multinational systemic sclerosis inception cohort","volume":"36","author":"Morrisroe","year":"2018","journal-title":"Clin Exp Rheumatol"},{"key":"2025060501414133400_rkaf052-B7","doi-asserted-by":"crossref","first-page":"441","DOI":"10.1093\/rheumatology\/kex182","article-title":"Functional disability and its predictors in systemic sclerosis: a study from the DeSScipher project within the EUSTAR group","volume":"57","author":"Jaeger","year":"2018","journal-title":"Rheumatology (Oxford)"},{"key":"2025060501414133400_rkaf052-B8","doi-asserted-by":"crossref","first-page":"1783","DOI":"10.1080\/09638288.2019.1674390","article-title":"Quality of life and strain among caregivers of patients with systemic sclerosis","volume":"42","author":"Stoop","year":"2020","journal-title":"Disabil Rehabil"},{"key":"2025060501414133400_rkaf052-B9","doi-asserted-by":"crossref","first-page":"e8503","DOI":"10.1097\/MD.0000000000008503","article-title":"Quantifying the direct public health care cost of systemic sclerosis: a comprehensive data linkage study","volume":"96","author":"Morrisroe","year":"2017","journal-title":"Medicine (Baltimore)"},{"key":"2025060501414133400_rkaf052-B10","doi-asserted-by":"crossref","first-page":"119","DOI":"10.1002\/art.24086","article-title":"The cost of systemic sclerosis","volume":"61","author":"Bernatsky","year":"2009","journal-title":"Arthritis Rheum"},{"key":"2025060501414133400_rkaf052-B11","doi-asserted-by":"crossref","first-page":"1327","DOI":"10.1136\/annrheumdis-2016-209909","article-title":"Update of EULAR recommendations for the treatment of systemic sclerosis","volume":"76","author":"Kowal-Bielecka","year":"2017","journal-title":"Ann Rheum Dis"},{"key":"2025060501414133400_rkaf052-B12","author":"World Health Organization","year":"2020"},{"key":"2025060501414133400_rkaf052-B13","author":"World Health Organization"},{"key":"2025060501414133400_rkaf052-B14","doi-asserted-by":"crossref","first-page":"e44","DOI":"10.1164\/rccm.202207-1262ST","article-title":"Palliative care early in the care continuum among patients with serious respiratory illness: an official ATS\/AAHPM\/HPNA\/SWHPN policy statement","volume":"206","author":"Sullivan","year":"2022","journal-title":"Am J Respir Crit Care Med"},{"key":"2025060501414133400_rkaf052-B15","doi-asserted-by":"crossref","first-page":"e18","DOI":"10.1164\/rccm.202202-0399ST","article-title":"Idiopathic pulmonary fibrosis (an update) and progressive pulmonary fibrosis in adults: an official ATS\/ERS\/JRS\/ALAT clinical practice guideline","volume":"205","author":"Raghu","year":"2022","journal-title":"Am J Respir Crit Care Med"},{"key":"2025060501414133400_rkaf052-B16","first-page":"e895","article-title":"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","year":"2022","journal-title":"Circulation"},{"key":"2025060501414133400_rkaf052-B17","doi-asserted-by":"crossref","first-page":"84","DOI":"10.1089\/jpm.2016.0330","article-title":"Palliative care interventions for patients with heart failure: a systematic review and meta-analysis","volume":"20","author":"Diop","year":"2017","journal-title":"J Palliat Med"},{"key":"2025060501414133400_rkaf052-B18","doi-asserted-by":"crossref","first-page":"968","DOI":"10.1016\/S2213-2600(17)30383-1","article-title":"Palliative care in interstitial lung disease: living well","volume":"5","author":"Kreuter","year":"2017","journal-title":"Lancet Respir Med"},{"key":"2025060501414133400_rkaf052-B19","author":"KPMG PCAa","year":"2020"},{"key":"2025060501414133400_rkaf052-B20","doi-asserted-by":"crossref","first-page":"137","DOI":"10.1164\/rccm.202306-1113ST","article-title":"Treatment of systemic sclerosis-associated interstitial lung disease: evidence-based recommendations. an official American Thoracic Society clinical practice guideline","volume":"209","author":"Raghu","year":"2024","journal-title":"Am J Respir Crit Care Med"},{"key":"2025060501414133400_rkaf052-B21","first-page":"957","article-title":"Examining the case for palliative care in patients with systemic sclerosis","volume":"51","author":"McDonald","year":"2024","journal-title":"J Rheumatol"},{"key":"2025060501414133400_rkaf052-B22","doi-asserted-by":"crossref","first-page":"964","DOI":"10.1002\/acr.25325","article-title":"Quantifying the need for specialist palliative care management in patients with systemic sclerosis","volume":"76","author":"Ross","year":"2024","journal-title":"Arthritis Care Res"},{"key":"2025060501414133400_rkaf052-B23","doi-asserted-by":"crossref","first-page":"1919","DOI":"10.1111\/imj.16233","article-title":"Multidisciplinary team discussion: the emerging gold standard for management of cardiopulmonary complications of connective tissue disease","volume":"53","author":"Fairley","year":"2023","journal-title":"Intern Med J"},{"key":"2025060501414133400_rkaf052-B24","doi-asserted-by":"crossref","first-page":"713","DOI":"10.1071\/AH22103","article-title":"Implementation of an integrated respiratory palliative care service for patients with advanced lung disease","volume":"46","author":"McDonald","year":"2022","journal-title":"Aust Health Rev"},{"key":"2025060501414133400_rkaf052-B25","doi-asserted-by":"crossref","first-page":"463","DOI":"10.1071\/AH23076","article-title":"Qualitative evaluation of an integrated respiratory and palliative care service: patient, caregiver and general practitioner perspectives","volume":"47","author":"McDonald","year":"2023","journal-title":"Aust Health Rev"},{"key":"2025060501414133400_rkaf052-B26","doi-asserted-by":"crossref","first-page":"E484","DOI":"10.1503\/cmaj.160775","article-title":"The \u201csurprise question\u201d for predicting death in seriously ill patients: a systematic review and meta-analysis","volume":"189","author":"Downar","year":"2017","journal-title":"CMAJ"},{"key":"2025060501414133400_rkaf052-B27","doi-asserted-by":"crossref","first-page":"1459","DOI":"10.1002\/acr.24053","article-title":"Can patient-reported symptoms be used to measure disease activity in systemic sclerosis?","volume":"72","author":"Ross","year":"2020","journal-title":"Arthritis Care Res (Hoboken)"},{"key":"2025060501414133400_rkaf052-B28","doi-asserted-by":"crossref","first-page":"1443","DOI":"10.1002\/acr.25056","article-title":"Patient and physician global assessments of disease status in systemic sclerosis","volume":"75","author":"Ross","year":"2023","journal-title":"Arthritis Care Res (Hoboken)"},{"key":"2025060501414133400_rkaf052-B29","doi-asserted-by":"crossref","DOI":"10.1093\/med\/9780197525173.001.0001","volume-title":"What\u2019s in the syringe?: Principles of early integrated palliative care","author":"Jacobsen","year":"2021"},{"key":"2025060501414133400_rkaf052-B30","doi-asserted-by":"crossref","first-page":"1684","DOI":"10.1089\/jpm.2018.0431","article-title":"National consensus project clinical practice guidelines for quality palliative care guidelines, 4th edition","volume":"21","author":"Ferrell","year":"2018","journal-title":"J Palliat Med"},{"key":"2025060501414133400_rkaf052-B31","doi-asserted-by":"crossref","first-page":"321","DOI":"10.1001\/jama.2021.23695","article-title":"Shifting to serious illness communication","volume":"327","author":"Jacobsen","year":"2022","journal-title":"JAMA"},{"key":"2025060501414133400_rkaf052-B32","doi-asserted-by":"crossref","first-page":"1007","DOI":"10.1007\/s10067-018-4358-x","article-title":"Optimal care for systemic sclerosis patients: recommendations from a patient-centered and multidisciplinary mixed-method study and working conference","volume":"38","author":"Spierings","year":"2019","journal-title":"Clin Rheumatol"},{"key":"2025060501414133400_rkaf052-B33","doi-asserted-by":"crossref","first-page":"197","DOI":"10.1186\/s12931-020-01459-0","article-title":"The need for a holistic approach for SSc-ILD\u2014achievements and ambiguity in a devastating disease","volume":"21","author":"Hoffmann-Vold","year":"2020","journal-title":"Respir Res"},{"key":"2025060501414133400_rkaf052-B34","doi-asserted-by":"crossref","first-page":"1363","DOI":"10.3899\/jrheum.151309","article-title":"Patients\u2019 perspectives and experiences living with systemic sclerosis: a systematic review and thematic synthesis of qualitative studies","volume":"43","author":"Nakayama","year":"2016","journal-title":"J Rheumatol"},{"key":"2025060501414133400_rkaf052-B35","doi-asserted-by":"crossref","first-page":"1226","DOI":"10.1093\/rheumatology\/kez417","article-title":"How do patients with systemic sclerosis experience currently provided healthcare and how should we measure its quality?","volume":"59","author":"Spierings","year":"2020","journal-title":"Rheumatology (Oxford)"},{"key":"2025060501414133400_rkaf052-B36","doi-asserted-by":"crossref","first-page":"1632","DOI":"10.1080\/09638288.2019.1608320","article-title":"Living with systemic sclerosis: exploring its impact on caregivers","volume":"42","author":"Schriemer","year":"2020","journal-title":"Disabil Rehabil"},{"key":"2025060501414133400_rkaf052-B37","doi-asserted-by":"crossref","first-page":"e003350","DOI":"10.1136\/rmdopen-2023-003350","article-title":"Efficacy of non-pharmacological interventions: a systematic review informing the 2023 EULAR recommendations for the management of fatigue in people with inflammatory rheumatic and musculoskeletal diseases","volume":"9","author":"Santos","year":"2023","journal-title":"RMD Open"},{"key":"2025060501414133400_rkaf052-B38","doi-asserted-by":"crossref","first-page":"e31780","DOI":"10.1097\/MD.0000000000031780","article-title":"Gastrointestinal involvement in systemic sclerosis: an updated review","volume":"101","author":"Nassar","year":"2022","journal-title":"Medicine (Baltimore"},{"key":"2025060501414133400_rkaf052-B39","doi-asserted-by":"crossref","first-page":"101707","DOI":"10.1016\/j.berh.2021.101707","article-title":"A comprehensive framework for navigating patient care in systemic sclerosis: a global response to the need for improving the practice of diagnostic and preventive strategies in SSc","volume":"35","author":"Saketkoo","year":"2021","journal-title":"Best Pract Res Clin Rheumatol"},{"key":"2025060501414133400_rkaf052-B40","doi-asserted-by":"crossref","first-page":"95","DOI":"10.1097\/BOR.0000000000000868","article-title":"Review of publications evaluating opioid use in patients with inflammatory rheumatic disease","volume":"34","author":"Anastasiou","year":"2022","journal-title":"Curr Opin Rheumatol"},{"key":"2025060501414133400_rkaf052-B41","first-page":"Cd011008","article-title":"Opioids for the palliation of refractory breathlessness in adults with advanced disease and terminal illness","volume":"3","author":"Barnes","year":"2016","journal-title":"Cochrane Database Syst Rev"},{"key":"2025060501414133400_rkaf052-B42","doi-asserted-by":"crossref","first-page":"e759","DOI":"10.1136\/bmjspcare-2019-001869","article-title":"Australia-modified Karnofsky Performance Scale and physical activity in COPD and lung cancer: an exploratory pooled data analysis","volume":"12","author":"Barbetta","year":"2022","journal-title":"BMJ Support Palliat Care"},{"key":"2025060501414133400_rkaf052-B43","doi-asserted-by":"crossref","first-page":"00460","DOI":"10.1183\/23120541.00460-2021","article-title":"Agreement of the modified Medical Research Council and New York Heart Association scales for assessing the impact of self-rated breathlessness in cardiopulmonary disease","volume":"8","author":"Ahmadi","year":"2022","journal-title":"ERJ Open Res"},{"key":"2025060501414133400_rkaf052-B44","doi-asserted-by":"crossref","first-page":"e65","DOI":"10.1097\/MLR.0b013e318297429c","article-title":"Why summary comorbidity measures such as the Charlson comorbidity index and Elixhauser score work","volume":"53","author":"Austin","year":"2015","journal-title":"Med Care"},{"key":"2025060501414133400_rkaf052-B45","author":"National Health and Medical Research Council ARC, Universities Australia"},{"key":"2025060501414133400_rkaf052-B46","author":"Australian Bureau of Statistics"},{"key":"2025060501414133400_rkaf052-B47","doi-asserted-by":"crossref","first-page":"523","DOI":"10.1007\/s00520-016-3433-6","article-title":"Advance directives in patients with advanced cancer receiving active treatment: attitudes, prevalence, and barriers","volume":"25","author":"McDonald","year":"2017","journal-title":"Support Care Cancer"},{"key":"2025060501414133400_rkaf052-B48","first-page":"398","article-title":"Cancer patients and advance directives: a survey of patients in a hematology and oncology outpatient clinic","volume":"36","author":"Hubert","year":"2013","journal-title":"Onkologie"},{"key":"2025060501414133400_rkaf052-B49","doi-asserted-by":"crossref","first-page":"e13415","DOI":"10.1111\/ecc.13415","article-title":"Evaluation of the role of the clinical nurse specialist in cancer care: an integrative literature review","volume":"30","author":"Kerr","year":"2021","journal-title":"Eur J Cancer Care (Engl)"},{"key":"2025060501414133400_rkaf052-B50","doi-asserted-by":"crossref","first-page":"720","DOI":"10.1136\/ard-2023-224416","article-title":"EULAR recommendations for the non-pharmacological management of systemic lupus erythematosus and systemic sclerosis","volume":"83","author":"Parodis","year":"2024","journal-title":"Ann Rheum Dis"}],"container-title":["Rheumatology Advances in Practice"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/rheumap\/advance-article-pdf\/doi\/10.1093\/rap\/rkaf052\/63417664\/rkaf052.pdf","content-type":"application\/pdf","content-version":"am","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/rheumap\/advance-article-pdf\/doi\/10.1093\/rap\/rkaf052\/63417664\/rkaf052.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/rheumap\/advance-article-pdf\/doi\/10.1093\/rap\/rkaf052\/63417664\/rkaf052.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,6,5]],"date-time":"2025-06-05T05:41:56Z","timestamp":1749102116000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/rheumap\/article\/doi\/10.1093\/rap\/rkaf052\/8155173"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025]]},"references-count":50,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2025,3,14]]}},"URL":"https:\/\/doi.org\/10.1093\/rap\/rkaf052","relation":{},"ISSN":["2514-1775"],"issn-type":[{"value":"2514-1775","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2025]]},"published":{"date-parts":[[2025]]},"article-number":"rkaf052"}}