{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,11]],"date-time":"2026-07-11T16:36:58Z","timestamp":1783787818110,"version":"3.55.0"},"reference-count":23,"publisher":"Wiley","issue":"10","license":[{"start":{"date-parts":[[2020,9,29]],"date-time":"2020-09-29T00:00:00Z","timestamp":1601337600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["APP 1126370"],"award-info":[{"award-number":["APP 1126370"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["acrjournals.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Arthritis Care &amp;amp; Research"],"published-print":{"date-parts":[[2020,10]]},"abstract":"<jats:sec><jats:title>Objective<\/jats:title><jats:p>To evaluate the association between patient\u2010reported symptoms and changes in disease activity over time in systemic sclerosis (SSc).<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Using data from 1,636 patients enrolled in the Australian Scleroderma Cohort Study, we used generalized estimating equations to determine the relationship between patient\u2010reported worsening of Raynaud\u2019s phenomenon (RP), skin involvement, and breathlessness in the month preceding each study visit and features of disease activity in the corresponding organ systems. The associations between the following parameters were analyzed: patient\u2010reported worsening RP and the presence of new\u2010onset digital pitting and digital ulcers; patient\u2010reported worsening skin involvement and increasing modified Rodnan skin thickness score (MRSS); new areas of skin involvement and new\u2010onset joint contractures; patient\u2010reported worsening breathlessness and deteriorating respiratory functions test (RFT) results, indicated by a 10% decrease in forced vital capacity (FVC) and a 15% decrease in diffusing capacity for carbon monoxide (DL<jats:sc>co<\/jats:sc>), new\u2010onset interstitial lung disease (ILD), and new\u2010onset pulmonary arterial hypertension (PAH).<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>We found a significant association between patient\u2010reported worsening RP and the presence of digital ulcers (odds ratio [OR] 1.53 [95% confidence interval (95% CI) 0.60\u20130.93]), patient\u2010reported worsening skin involvement and increasing MRSS (OR 2.10 [95% CI 1.54\u20132.86]), and worsening patient breathlessness and deteriorating RFTs (FVC OR 2.12 [95% CI 1.70\u20132.65]; DL<jats:sc>co<\/jats:sc> OR 1.97 [95% CI 1.34\u20132.02]), new\u2010onset ILD (OR 1.91 [95% CI 1.40\u20132.61]), and new\u2010onset PAH (OR 5.08 [95% CI 3.59\u20137.19]).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>These results demonstrate that patient\u2010reported symptoms are associated with clinically meaningful changes in disease activity in patients with SSc. This suggests that when objective measures of change in disease status are unavailable, patient\u2010reported symptoms could be used to indicate a change in SSc disease activity.<\/jats:p><\/jats:sec>","DOI":"10.1002\/acr.24053","type":"journal-article","created":{"date-parts":[[2019,8,17]],"date-time":"2019-08-17T10:49:36Z","timestamp":1566038976000},"page":"1459-1465","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":17,"title":["Can Patient\u2010Reported Symptoms Be Used to Measure Disease Activity in Systemic Sclerosis?"],"prefix":"10.1002","volume":"72","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4636-729X","authenticated-orcid":false,"given":"Laura","family":"Ross","sequence":"first","affiliation":[{"name":"St. Vincent\u2019s Hospital Melbourne and the University of Melbourne  Fitzroy Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wendy","family":"Stevens","sequence":"additional","affiliation":[{"name":"St. Vincent\u2019s Hospital Melbourne  Fitzroy Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michelle","family":"Wilson","sequence":"additional","affiliation":[{"name":"St. Vincent\u2019s Hospital Melbourne  Fitzroy Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gemma","family":"Strickland","sequence":"additional","affiliation":[{"name":"St. Vincent\u2019s Hospital Melbourne  Fitzroy Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer","family":"Walker","sequence":"additional","affiliation":[{"name":"Flinders Medical Centre, Bedford Park, South Australia, Australia, and Royal Adelaide Hospital and Flinders University  Adelaide 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-Siew","family":"Ngian","sequence":"additional","affiliation":[{"name":"Monash Health and Monash University  Clayton Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Janet","family":"Roddy","sequence":"additional","affiliation":[{"name":"Fiona Stanley Hospital  Murdoch Western Australia Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3464-7438","authenticated-orcid":false,"given":"Gabor","family":"Major","sequence":"additional","affiliation":[{"name":"Royal Newcastle Centre  New Lambton Heights New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susanna","family":"Proudman","sequence":"additional","affiliation":[{"name":"Royal Adelaide Hospital and University of Adelaide  Adelaide South Australia Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Murray","family":"Baron","sequence":"additional","affiliation":[{"name":"Sir Mortimer B. Davis Jewish General Hospital  Montreal Quebec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mandana","family":"Nikpour","sequence":"additional","affiliation":[{"name":"St. Vincent\u2019s Hospital Melbourne and the University of Melbourne  Fitzroy Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2020,9,29]]},"reference":[{"key":"e_1_2_6_2_1","doi-asserted-by":"publisher","DOI":"10.1177\/2397198318765061"},{"key":"e_1_2_6_3_1","doi-asserted-by":"publisher","DOI":"10.1002\/acr.23475"},{"key":"e_1_2_6_4_1","doi-asserted-by":"publisher","DOI":"10.1136\/ard.60.6.592"},{"key":"e_1_2_6_5_1","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis-2016-209768"},{"key":"e_1_2_6_6_1","doi-asserted-by":"publisher","DOI":"10.1002\/art.39501"},{"key":"e_1_2_6_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/art.10486"},{"key":"e_1_2_6_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/art.1780401110"},{"key":"e_1_2_6_9_1","doi-asserted-by":"publisher","DOI":"10.1002\/acr.23729"},{"key":"e_1_2_6_10_1","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/kew003"},{"key":"e_1_2_6_11_1","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis-2016-210534"},{"key":"e_1_2_6_12_1","doi-asserted-by":"crossref","first-page":"792","DOI":"10.3899\/jrheum.131251","article-title":"Reconciling healthcare professional and patient perspectives in the development of disease activity and response criteria in connective tissue disease-related interstitial lung diseases","volume":"41","author":"Saketkoo LA","year":"2014","journal-title":"J Rheumatol"},{"key":"e_1_2_6_13_1","doi-asserted-by":"publisher","DOI":"10.1080\/17476348.2016.1251843"},{"key":"e_1_2_6_14_1","doi-asserted-by":"crossref","DOI":"10.1183\/16000617.0039-2017","article-title":"Exertional dyspnoea in pulmonary arterial hypertension","volume":"26","author":"Dumitrescu D","year":"2017","journal-title":"Eur Respir Rev"},{"key":"e_1_2_6_15_1","doi-asserted-by":"publisher","DOI":"10.1002\/art.38098"},{"key":"e_1_2_6_16_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_6_17_1","first-page":"1892","article-title":"Skin thickness score in systemic sclerosis: an assessment of interobserver variability in 3 independent studies","volume":"20","author":"Clements P","year":"1993","journal-title":"J Rheumatol"},{"key":"e_1_2_6_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.semarthrit.2016.07.010"},{"key":"e_1_2_6_19_1","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis-2014-205226"},{"key":"e_1_2_6_20_1","doi-asserted-by":"publisher","DOI":"10.1136\/ard.2005.050187"},{"issue":"91","key":"e_1_2_6_21_1","first-page":"S111","article-title":"Quantifying change in pulmonary function as a prognostic marker in systemic sclerosis-related interstitial lung disease","volume":"33","author":"Moore OA","year":"2015","journal-title":"Clin Exp Rheumatol"},{"key":"e_1_2_6_22_1","doi-asserted-by":"publisher","DOI":"10.1002\/1529-0131(200011)43:11<2437::AID-ANR10>3.0.CO;2-U"},{"key":"e_1_2_6_23_1","first-page":"1188","article-title":"Minimal clinically important improvement and patient acceptable symptoms state for subjective outcome measures in rheumatic disorders","volume":"34","author":"Tubach F","year":"2007","journal-title":"J Rheumatol"},{"key":"e_1_2_6_24_1","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/kex396"}],"container-title":["Arthritis Care &amp; Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/acr.24053","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/acr.24053","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/acrjournals.onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/acr.24053","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,2]],"date-time":"2025-10-02T16:24:39Z","timestamp":1759422279000},"score":1,"resource":{"primary":{"URL":"https:\/\/acrjournals.onlinelibrary.wiley.com\/doi\/10.1002\/acr.24053"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,9,29]]},"references-count":23,"journal-issue":{"issue":"10","published-print":{"date-parts":[[2020,10]]}},"alternative-id":["10.1002\/acr.24053"],"URL":"https:\/\/doi.org\/10.1002\/acr.24053","archive":["Portico"],"relation":{},"ISSN":["2151-464X","2151-4658"],"issn-type":[{"value":"2151-464X","type":"print"},{"value":"2151-4658","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,9,29]]},"assertion":[{"value":"2019-02-21","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2019-08-13","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2020-09-29","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}