{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,12]],"date-time":"2026-09-12T03:41:43Z","timestamp":1789184503754,"version":"build-2803163510"},"reference-count":42,"publisher":"Wiley","issue":"11","license":[{"start":{"date-parts":[[2017,10,9]],"date-time":"2017-10-09T00:00:00Z","timestamp":1507507200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Arthritis Care &amp; Research"],"published-print":{"date-parts":[[2017,11]]},"abstract":"<jats:sec><jats:title>Objective<\/jats:title><jats:p>Patients with systemic sclerosis (<jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c) experience severe physical limitations and psychological morbidity, but their lived experience remains underrepresented and is reflected in the scarcity of evidence\u2010based patient\u2010centered interventions. We aimed to describe patients\u2019 perspectives of <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c to inform strategies to improve their care.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Face\u2010to\u2010face semistructured interviews were conducted with 30 adult patients with limited cutaneous or diffuse cutaneous <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c in Australia. Transcripts were thematically analyzed using Hyper<jats:styled-content style=\"fixed-case\">RESEARCH<\/jats:styled-content> software.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Six themes were identified: bodily malfunction (restrictive pain, debilitating physical changes, pervasive exhaustion), deprivation of social function (loss of work and career, social isolation, threat to traditional roles, loss of intimacy), disintegration of identity (stigmatizing physical changes, disassociated self\u2010image, extinguished hopes, alone and powerless, invisibility of illness), insecurity of care (unrecognized disease, ambiguity around diagnosis and cause, information insufficiency, resigning to treatment limitations, seeking reassurance<jats:italic>,<\/jats:italic> fear of progression), avoiding the sick role (evading thoughts of sickness, protecting family, favorable comparison), and perseverance and hope (positive stoicism, optimism about treatment and monitoring, taking control of own health, pursuing alternative treatments, transcending illness through support).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p><jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c inflicts major bodily and social restrictions that crush patients\u2019 identity and self\u2010image. Uncertainties about the cause, diagnosis, and prognosis can undermine confidence in care, leading to anxiety and therapeutic nihilism. Access to psychosocial care to support the patients\u2019 role and functioning capacity, as well as communication and education that explicitly address their concerns regarding management may potentially improve treatment satisfaction, self\u2010efficacy, adherence, and outcomes in patients with <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c.<\/jats:p><\/jats:sec>","DOI":"10.1002\/acr.23207","type":"journal-article","created":{"date-parts":[[2017,1,27]],"date-time":"2017-01-27T15:26:58Z","timestamp":1485530818000},"page":"1733-1742","source":"Crossref","is-referenced-by-count":42,"title":["\u201cIt's Not Me, It's Not Really Me.\u201d Insights From Patients on Living With Systemic Sclerosis: An Interview Study"],"prefix":"10.1002","volume":"69","author":[{"given":"Daniel","family":"Sumpton","sequence":"first","affiliation":[{"name":"University of Sydney Sydney, The Children's Hospital at Westmead, Westmead, Liverpool Hospital and Ingham Institute for Applied 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