{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,24]],"date-time":"2026-10-24T18:53:02Z","timestamp":1792867982025,"version":"4.5.0"},"reference-count":24,"publisher":"Wiley","issue":"8","license":[{"start":{"date-parts":[[2018,7,4]],"date-time":"2018-07-04T00:00:00Z","timestamp":1530662400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000069","name":"National Institute of Arthritis and Musculoskeletal and Skin Diseases","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000069","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000098","name":"NIH Clinical Center","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000098","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":[[2018,8]]},"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>\n                      To assess patient\u2010reported symptoms and burden of disease in relapsing polychondritis (\n                      <jats:styled-content style=\"fixed-case\">RP<\/jats:styled-content>\n                      ).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      Patients with\n                      <jats:styled-content style=\"fixed-case\">RP<\/jats:styled-content>\n                      completed a disease\u2010specific online survey to identify symptoms attributed to illness. Patients were divided into subgroups based upon presence or absence of ear\/nose, airway, or joint involvement. Pathway to diagnosis, treatment, and disease\u2010related complications were assessed within each subgroup.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Data from 304 respondents were included in this analysis. Prior to diagnosis, most patients with\n                      <jats:styled-content style=\"fixed-case\">RP<\/jats:styled-content>\n                      went to the emergency room (54%), saw &gt; 3 physicians (54%), and had symptoms for &gt;5 years (64%). A concomitant diagnosis of fibromyalgia and absence of ear\/nose or joint involvement was associated with diagnostic delay &gt;1 year. Common diagnoses prior to\n                      <jats:styled-content style=\"fixed-case\">RP<\/jats:styled-content>\n                      diagnosis included asthma in patients with airway involvement (35% versus 22%;\n                      <jats:italic>P<\/jats:italic>\n                      = 0.03) and ear infection in patients with ear\/nose involvement (51% versus 6%;\n                      <jats:italic>P<\/jats:italic>\n                      &lt; 0.01). Patients with joint involvement were more likely to receive a glucocorticoid\u2010sparing agent (85% versus 13%;\n                      <jats:italic>P<\/jats:italic>\n                      &lt; 0.01). Most patients reported a major complication, including disability (25%), tracheomalacia (16%), or hearing loss (34%). Patients with airway involvement reported more tracheomalacia (20% versus 4%;\n                      <jats:italic>P<\/jats:italic>\n                      &lt; 0.01). Disability (24% versus 7%;\n                      <jats:italic>P<\/jats:italic>\n                      &lt; 0.01) and hearing loss (39% versus 11%;\n                      <jats:italic>P<\/jats:italic>\n                      &lt; 0.01) were prevalent in the joint involvement subgroup.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>\n                      Patient\u2010reported data in\n                      <jats:styled-content style=\"fixed-case\">RP<\/jats:styled-content>\n                      highlight a significant burden of disease. Patterns of organ involvement may lead to diagnostic delay and influence treatment decisions, ultimately impacting the development of disease\u2010related complications. Timely diagnosis, standardization of treatment approaches, and prevention of disease\u2010related complications are major unmet needs in\n                      <jats:styled-content style=\"fixed-case\">RP<\/jats:styled-content>\n                      .\n                    <\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/acr.23492","type":"journal-article","created":{"date-parts":[[2017,12,16]],"date-time":"2017-12-16T16:49:57Z","timestamp":1513442997000},"page":"1124-1131","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":29,"title":["Patient Perception of Disease\u2010Related Symptoms and Complications in Relapsing Polychondritis"],"prefix":"10.1002","volume":"70","author":[{"given":"Marcela A.","family":"Ferrada","sequence":"first","affiliation":[{"name":"National Institutes of Health Bethesda Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8269-9438","authenticated-orcid":false,"given":"Peter C.","family":"Grayson","sequence":"additional","affiliation":[{"name":"National Institutes of Health Bethesda Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shubhasree","family":"Banerjee","sequence":"additional","affiliation":[{"name":"National Institutes of Health Bethesda Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Keith","family":"A. Sikora","sequence":"additional","affiliation":[{"name":"National Institutes of Health Bethesda Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert","family":"A. Colbert","sequence":"additional","affiliation":[{"name":"National Institutes of Health Bethesda Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ninet","family":"Sinaii","sequence":"additional","affiliation":[{"name":"National Institutes of Health Bethesda Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"James D.","family":"Katz","sequence":"additional","affiliation":[{"name":"National Institutes of Health Bethesda Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2018,7,4]]},"reference":[{"key":"e_1_2_7_2_1","first-page":"93","article-title":"Polychondropathia","volume":"6","author":"Jackch\u2010Worthenhorst R","year":"1923","journal-title":"Arch Intern Med"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1001\/archderm.93.6.664"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bjps.2013.05.013"},{"key":"e_1_2_7_5_1","first-page":"396","article-title":"Relapsing polychondritis: a report on two Chinese patients with severe costal chondritis","volume":"19","author":"Lim MC","year":"1990","journal-title":"Ann Acad Med Singapore"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ajem.2006.02.016"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1378\/chest.112.6.1701"},{"key":"e_1_2_7_8_1","first-page":"84","article-title":"Tracheomalacia bronchomalacia: a severe complication of relapsing polychondritis","volume":"91","author":"Mezghani Ben Salah S","year":"2013","journal-title":"Tunis Med"},{"key":"e_1_2_7_9_1","first-page":"171","article-title":"Recurrent pneumonia in relapsing polychondritis","volume":"161","author":"Bin\u2010Sagheer ST","year":"1994","journal-title":"West J Med"},{"key":"e_1_2_7_10_1","doi-asserted-by":"publisher","DOI":"10.1002\/ccd.1810070111"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0167-5273(97)00093-4"},{"key":"e_1_2_7_12_1","doi-asserted-by":"publisher","DOI":"10.1177\/1538574413488459"},{"key":"e_1_2_7_13_1","doi-asserted-by":"publisher","DOI":"10.1034\/j.1600-0420.2000.078002228.x"},{"key":"e_1_2_7_14_1","first-page":"315","article-title":"Arthritis, deafness, and saddle nose (relapsing polychondritis)","volume":"58","author":"Bollet AJ","year":"1969","journal-title":"J Med Assoc Ga"},{"key":"e_1_2_7_15_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.1.6115.743"},{"key":"e_1_2_7_16_1","doi-asserted-by":"publisher","DOI":"10.1136\/bcr-2015-209483"},{"key":"e_1_2_7_17_1","doi-asserted-by":"publisher","DOI":"10.7326\/0003-4819-104-1-74"},{"key":"e_1_2_7_18_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-014-0198-1"},{"key":"e_1_2_7_19_1","doi-asserted-by":"publisher","DOI":"10.7326\/0003-4819-129-2-199807150-00011"},{"key":"e_1_2_7_20_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00296-016-3449-8"},{"key":"e_1_2_7_21_1","doi-asserted-by":"publisher","DOI":"10.1097\/00005792-197605000-00001"},{"key":"e_1_2_7_22_1","doi-asserted-by":"publisher","DOI":"10.1002\/art.39790"},{"key":"e_1_2_7_23_1","first-page":"2181","article-title":"Incidence and mortality of relapsing polychondritis in the UK: a population\u2010based cohort study","volume":"54","author":"Hazra N","year":"2015","journal-title":"Rheumatology (Oxford)"},{"key":"e_1_2_7_24_1","doi-asserted-by":"publisher","DOI":"10.3346\/jkms.2016.31.11.1846"},{"key":"e_1_2_7_25_1","doi-asserted-by":"publisher","DOI":"10.1155\/2016\/9462489"}],"container-title":["Arthritis Care &amp; 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