{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,25]],"date-time":"2026-08-25T19:47:20Z","timestamp":1787687240604,"version":"build-2784847793"},"reference-count":34,"publisher":"Wiley","issue":"9","license":[{"start":{"date-parts":[[2018,8,16]],"date-time":"2018-08-16T00:00:00Z","timestamp":1534377600000},"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","award":["K24 AR 063120"],"award-info":[{"award-number":["K24 AR 063120"]}],"id":[{"id":"10.13039\/100000069","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":[[2018,9]]},"abstract":"Objective<\/jats:title>Raynaud's phenomenon (RP<\/jats:styled-content>) is the most common manifestation of systemic sclerosis (SS<\/jats:styled-content>c). RP<\/jats:styled-content> is an episodic phenomenon, not easily assessed in the clinic, leading to reliance on self\u2010report. A thorough understanding of the patient experience of SS<\/jats:styled-content>c\u2010RP<\/jats:styled-content> is essential to ensuring that patient\u2010reported outcome (PRO<\/jats:styled-content>) instruments capture domains important to the target patient population. We report the findings of an international qualitative research study investigating the patient experience of SS<\/jats:styled-content>c\u2010RP<\/jats:styled-content>.<\/jats:p><\/jats:sec>Methods<\/jats:title>Focus groups of SS<\/jats:styled-content>c patients were conducted across 3 scleroderma centers in the US<\/jats:styled-content> and UK<\/jats:styled-content>, using a topic guide and a priori purposive sampling framework devised by qualitative researchers, SS<\/jats:styled-content>c patients, and SS<\/jats:styled-content>c experts. Focus groups were audio recorded, transcribed, anonymized, and analyzed using inductive thematic analysis. Focus groups were conducted until thematic saturation was achieved.<\/jats:p><\/jats:sec>Results<\/jats:title>Forty SS<\/jats:styled-content>c patients participated in 6 focus groups conducted in Bath (UK<\/jats:styled-content>), New Orleans (Louisiana), and Pittsburgh (Pennsylvania). Seven major themes were identified that encapsulate the patient experience of SS<\/jats:styled-content>c\u2010RP<\/jats:styled-content>: physical symptoms, emotional impact, triggers and exacerbating factors, constant vigilance and self\u2010management, impact on daily life, uncertainty, and adaptation. The interrelationship of the 7 constituent themes can be arranged within a conceptual map of SS<\/jats:styled-content>c\u2010RP<\/jats:styled-content>.<\/jats:p><\/jats:sec>Conclusion<\/jats:title>We have explored the patient experience of SS<\/jats:styled-content>c\u2010RP<\/jats:styled-content> in a diverse and representative SS<\/jats:styled-content>c cohort and identified a complex interplay of experiences that result in significant impact. Work to develop a novel PRO<\/jats:styled-content> instrument for assessing the severity and impact of SS<\/jats:styled-content>c\u2010RP<\/jats:styled-content>, comprising domains\/items grounded in the patient experiences of SS<\/jats:styled-content>c\u2010RP<\/jats:styled-content> identified in this study, is underway.<\/jats:p><\/jats:sec>","DOI":"10.1002\/acr.23475","type":"journal-article","created":{"date-parts":[[2017,11,21]],"date-time":"2017-11-21T15:42:37Z","timestamp":1511278957000},"page":"1373-1384","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":73,"title":["Multinational Qualitative Research Study Exploring the Patient Experience of Raynaud's Phenomenon in Systemic Sclerosis"],"prefix":"10.1002","volume":"70","author":[{"given":"John D.","family":"Pauling","sequence":"first","affiliation":[{"name":"Royal National Hospital for Rheumatic Diseases (at Royal United Hospitals), and University of Bath Bath 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