{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,4]],"date-time":"2026-06-04T17:13:08Z","timestamp":1780593188093,"version":"3.54.1"},"reference-count":33,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2020,4,28]],"date-time":"2020-04-28T00:00:00Z","timestamp":1588032000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["acrjournals.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Arthritis Care &amp;amp; Research"],"published-print":{"date-parts":[[2020,5]]},"abstract":"<jats:sec><jats:title>Objective<\/jats:title><jats:p>Digital ulcers (<jats:styled-content style=\"fixed-case\">DU<\/jats:styled-content>s) are a major cause of disease\u2010related morbidity and are a difficult\u2010to\u2010treat vascular complication of systemic sclerosis (<jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c). Demonstrating treatment efficacy has traditionally focused on clinician assessment of <jats:styled-content style=\"fixed-case\">DU<\/jats:styled-content>s alone. No existing patient\u2010reported outcome (<jats:styled-content style=\"fixed-case\">PRO<\/jats:styled-content>) instrument captures the multifaceted impact of <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c\u2010<jats:styled-content style=\"fixed-case\">DU<\/jats:styled-content>. We report the findings of a multicenter qualitative research study exploring the patient experience of <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c\u2010<jats:styled-content style=\"fixed-case\">DU<\/jats:styled-content>.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Patient focus groups were conducted across 3 scleroderma units, following a topic guide devised by <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c patients, experts, and experienced qualitative researchers. A purposive sampling framework ensured that the experiences of a diverse group of patients were captured. Focus groups were audio recorded, and information was transcribed, anonymized, and analyzed using inductive thematic analysis. We continued focus groups until thematic saturation was achieved.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Twenty\u2010nine <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c patients with a history of <jats:styled-content style=\"fixed-case\">DU<\/jats:styled-content> disease participated in 4 focus groups across the <jats:styled-content style=\"fixed-case\">UK<\/jats:styled-content> (Bath, Manchester, and London). Five major interrelated themes (and subthemes) were identified that encompass the patient experience of <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c\u2010<jats:styled-content style=\"fixed-case\">DU<\/jats:styled-content>: disabling pain and hypersensitivity; deep and broad\u2010ranging emotional impact; impairment of physical and social activity; factors aggravating occurrence, duration, and impact; and mitigating, managing, and adapting.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>The patient experience of <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c\u2010<jats:styled-content style=\"fixed-case\">DU<\/jats:styled-content> is multifaceted and comprises a complex interplay of experiences associated with significant pain and morbidity. Patient experiences of <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c\u2010<jats:styled-content style=\"fixed-case\">DU<\/jats:styled-content> are not captured using existing <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c\u2010<jats:styled-content style=\"fixed-case\">DU<\/jats:styled-content> outcomes. Our findings will inform the development of a novel <jats:styled-content style=\"fixed-case\">PRO<\/jats:styled-content> instrument to assess the severity and impact of <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c\u2010<jats:styled-content style=\"fixed-case\">DU<\/jats:styled-content> for use in future <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c\u2010<jats:styled-content style=\"fixed-case\">DU<\/jats:styled-content> clinical trials.<\/jats:p><\/jats:sec>","DOI":"10.1002\/acr.24127","type":"journal-article","created":{"date-parts":[[2019,12,16]],"date-time":"2019-12-16T08:36:15Z","timestamp":1576485375000},"page":"723-733","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":39,"title":["Multicenter Qualitative Study Exploring the Patient Experience of Digital Ulcers in Systemic Sclerosis"],"prefix":"10.1002","volume":"72","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-3361-4909","authenticated-orcid":false,"given":"Michael","family":"Hughes","sequence":"first","affiliation":[{"name":"University of Manchester, Manchester, Royal Hallamshire Hospital, and Sheffield Teaching Hospitals NHS Foundation Trust  Sheffield UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2793-2364","authenticated-orcid":false,"given":"John D.","family":"Pauling","sequence":"additional","affiliation":[{"name":"Royal National Hospital for Rheumatic Diseases and University of Bath  Bath UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer","family":"Jones","sequence":"additional","affiliation":[{"name":"Bristol Medical School  Bristol UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3975-8938","authenticated-orcid":false,"given":"Christopher P.","family":"Denton","sequence":"additional","affiliation":[{"name":"Royal Free Hospital University College London  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robyn T.","family":"Domsic","sequence":"additional","affiliation":[{"name":"University of Pittsburgh Medical Center  Pittsburgh PA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5472-3840","authenticated-orcid":false,"given":"Tracy M.","family":"Frech","sequence":"additional","affiliation":[{"name":"University of Utah and Salt Lake Veterans Affairs Medical Center  Salt Lake City"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ariane L.","family":"Herrick","sequence":"additional","affiliation":[{"name":"University of Manchester Salford Royal NHS Foundation Trust, and Manchester Academic Health Science Centre  Manchester UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1412-4453","authenticated-orcid":false,"given":"Dinesh","family":"Khanna","sequence":"additional","affiliation":[{"name":"University of Michigan  Ann Arbor"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marco","family":"Matucci\u2010Cerinic","sequence":"additional","affiliation":[{"name":"University of Florence  Florence Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lorraine","family":"McKenzie","sequence":"additional","affiliation":[{"name":"Patient representative (contact via Dr. Herrick, University of Manchester, Manchester, UK)"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lesley Ann","family":"Saketkoo","sequence":"additional","affiliation":[{"name":"Tulane University School of Medicine New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center, and University Medical Center Comprehensive Pulmonary Hypertension Center  New Orleans Louisiana"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rachael","family":"Gooberman\u2010Hill","sequence":"additional","affiliation":[{"name":"Bristol Medical School, NIHR Bristol Biomedical Research Centre, and University Hospitals Bristol NHS Foundation Trust  Bristol UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrew","family":"Moore","sequence":"additional","affiliation":[{"name":"Bristol Medical School  Bristol UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2020,4,28]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/kew047"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1002\/acr.20336"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.3109\/03009742.2013.780095"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.130900"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/kev201"},{"key":"e_1_2_7_7_1","first-page":"1407","article-title":"Intravenous iloprost treatment of Raynaud's phenomenon and ischemic ulcers secondary to systemic sclerosis","volume":"19","author":"Wigley FM","year":"1992","journal-title":"J Rheumatol"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.1136\/ard.2010.130658"},{"key":"e_1_2_7_9_1","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis-2014-207001"},{"key":"e_1_2_7_10_1","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis-2015-208121"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10067-013-2460-7"},{"key":"e_1_2_7_12_1","doi-asserted-by":"publisher","DOI":"10.1002\/acr.22833"},{"key":"e_1_2_7_13_1","doi-asserted-by":"publisher","DOI":"10.1177\/2397198318764796"},{"key":"e_1_2_7_14_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2016.5258"},{"key":"e_1_2_7_15_1","doi-asserted-by":"publisher","DOI":"10.5301\/jsrd.5000232"},{"key":"e_1_2_7_16_1","doi-asserted-by":"publisher","DOI":"10.5301\/jsrd.5000236"},{"key":"e_1_2_7_17_1","doi-asserted-by":"publisher","DOI":"10.1007\/s40674-019-00118-w"},{"key":"e_1_2_7_18_1","doi-asserted-by":"publisher","DOI":"10.5301\/jsrd.5000238"},{"key":"e_1_2_7_19_1","first-page":"1718","article-title":"Disease and symptom burden in systemic sclerosis: a patient perspective","volume":"34","author":"Suarez\u2010Almazor ME","year":"2007","journal-title":"J Rheumatol"},{"key":"e_1_2_7_20_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.semarthrit.2018.08.001"},{"key":"e_1_2_7_21_1","first-page":"184","article-title":"Patient participation in patient\u2010reported outcome instrument development in systemic sclerosis","volume":"106","author":"Pauling J","year":"2017","journal-title":"Clin Exp Rheumatol"},{"key":"e_1_2_7_22_1","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.131312"},{"key":"e_1_2_7_23_1","unstructured":"Administration U.S.D.o.H.a.H.S.F.a.D. Guidance for industry: patient\u2010reported outcome measures. Use in medical product development to support labeling claims. 2009."},{"key":"e_1_2_7_24_1","doi-asserted-by":"publisher","DOI":"10.1037\/10518-189"},{"key":"e_1_2_7_25_1","doi-asserted-by":"publisher","DOI":"10.1002\/art.38098"},{"key":"e_1_2_7_26_1","first-page":"202","article-title":"Scleroderma (systemic sclerosis): classification, subsets and pathogenesis","volume":"15","author":"LeRoy EC","year":"1988","journal-title":"J Rheumatol"},{"key":"e_1_2_7_27_1","doi-asserted-by":"publisher","DOI":"10.1177\/1525822X05279903"},{"key":"e_1_2_7_28_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_2_7_29_1","volume-title":"Discovery of grounded theory: strategies for qualitative research","author":"Glaser B","year":"1967"},{"key":"e_1_2_7_30_1","doi-asserted-by":"publisher","DOI":"10.1002\/acr.23475"},{"key":"e_1_2_7_31_1","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.151309"},{"issue":"10","key":"e_1_2_7_32_1","first-page":"1863","article-title":"Development and content validity of the Hand Disability in Systemic Sclerosis\u2014Digital Ulcers (HDISS\u2010DU) scale [abstract]","volume":"63","author":"Khanna DK","year":"2011","journal-title":"Arthritis Rheum"},{"key":"e_1_2_7_33_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.mvr.2016.12.008"},{"key":"e_1_2_7_34_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.mehy.2018.04.024"}],"container-title":["Arthritis Care &amp; Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1002%2Facr.24127","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/acr.24127","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/acr.24127","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/acrjournals.onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/acr.24127","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,2]],"date-time":"2025-10-02T15:13:16Z","timestamp":1759417996000},"score":1,"resource":{"primary":{"URL":"https:\/\/acrjournals.onlinelibrary.wiley.com\/doi\/10.1002\/acr.24127"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,4,28]]},"references-count":33,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2020,5]]}},"alternative-id":["10.1002\/acr.24127"],"URL":"https:\/\/doi.org\/10.1002\/acr.24127","archive":["Portico"],"relation":{},"ISSN":["2151-464X","2151-4658"],"issn-type":[{"value":"2151-464X","type":"print"},{"value":"2151-4658","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,4,28]]},"assertion":[{"value":"2019-07-15","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2019-12-10","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2020-04-28","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}