{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,21]],"date-time":"2026-09-21T01:18:52Z","timestamp":1789953532109,"version":"4.0.1"},"reference-count":10,"publisher":"BMJ","issue":"3","license":[{"start":{"date-parts":[[2018,5,24]],"date-time":"2018-05-24T00:00:00Z","timestamp":1527120000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Scleroderma and Related Disorders"],"published-print":{"date-parts":[[2018,10]]},"abstract":"<jats:p>The episodic nature of Raynaud\u2019s phenomenon in systemic sclerosis has led to a reliance on patient-reported outcome instruments such as the Raynaud\u2019s Condition Score diary. Little is known about the utilization in routine clinical practice and health professional attitudes toward existing patient-reported outcome instruments for assessing systemic sclerosis-Raynaud\u2019s phenomenon. Members of the Scleroderma Clinical Trials Consortium Vascular Working Group (n\u2009=\u200928) were invited to participate in a survey gauging attitudes toward the Raynaud\u2019s Condition Score diary and the perceived need for novel patient-reported outcome instruments for assessing patient-reported outcome. Nineteen Scleroderma Clinical Trials Consortium Vascular Working Group members (68% response rate) from academic units based in North America (n\u2009=\u20099), Europe (n\u2009=\u20098), South America (n\u2009=\u20091) and Australasia (n\u2009=\u20091) took part in the survey. There was broad consensus that Raynaud\u2019s Condition Score diary returns could be influenced by factors including seasonal variation in weather, efforts made by patients to avoid or ameliorate attacks of Raynaud\u2019s phenomenon, habituation to Raynaud\u2019s phenomenon symptoms, evolution of Raynaud\u2019s phenomenon symptom characteristics with progressive obliterative microangiopathy, patient-coping strategies, respondent burden and placebo effect. There was consensus that limitations of the Raynaud\u2019s Condition Score diary might be a barrier to drug development (79% of respondents agree\/strongly agree) and that a novel patient-reported outcome instrument for assessing systemic sclerosis-Raynaud\u2019s phenomenon should be developed with the input of both clinicians and patients (84% agree\/strongly agree). Perceived potential limitations of the Raynaud\u2019s Condition Score diary have been identified along with concerns that such factors might impede drug development programs for systemic sclerosis-Raynaud\u2019s phenomenon. There is support within the systemic sclerosis community for the development of a novel patient-reported outcome instrument for assessing systemic sclerosis-Raynaud\u2019s phenomenon.<\/jats:p>","DOI":"10.1177\/2397198318774307","type":"journal-article","created":{"date-parts":[[2018,5,24]],"date-time":"2018-05-24T05:57:01Z","timestamp":1527141421000},"page":"249-252","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":47,"title":["Patient-reported outcome instruments for assessing Raynaud\u2019s phenomenon in systemic sclerosis: A SCTC vascular working group report"],"prefix":"10.1136","volume":"3","author":[{"given":"John D","family":"Pauling","sequence":"first","affiliation":[{"name":"Royal National Hospital for Rheumatic Diseases, Bath, UK"},{"name":"Department of Pharmacy & Pharmacology, University of Bath, Bath, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tracy M","family":"Frech","sequence":"additional","affiliation":[{"name":"University of Utah and Salt Lake Regional Veterans Affair Medical Center, Salt Lake City, UT, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael","family":"Hughes","sequence":"additional","affiliation":[{"name":"Centre for Musculoskeletal Research, The University of Manchester and Salford Royal NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jessica K","family":"Gordon","sequence":"additional","affiliation":[{"name":"Hospital for Special Surgery, New York, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robyn T","family":"Domsic","sequence":"additional","affiliation":[{"name":"University of Pittsburgh Medical Center, Pittsburgh, PA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marina E","family":"Anderson","sequence":"additional","affiliation":[{"name":"Institute of Ageing and Chronic Disease, Faculty of Health and Life Science, University of Liverpool and Aintree University Hospital, Liverpool, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Francesca","family":"Ingegnoli","sequence":"additional","affiliation":[{"name":"Division of Rheumatology, Department of Clinical Sciences and Community Health, University of Milan, Milan, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Neil J","family":"McHugh","sequence":"additional","affiliation":[{"name":"Royal National Hospital for Rheumatic Diseases, Bath, UK"},{"name":"Department of Pharmacy & Pharmacology, University of Bath, Bath, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sindhu R","family":"Johnson","sequence":"additional","affiliation":[{"name":"Toronto Scleroderma Program, Toronto Western Hospital, Mount Sinai Hospital, Toronto, ON, Canada"},{"name":"Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marie","family":"Hudson","sequence":"additional","affiliation":[{"name":"Jewish General Hospital, Lady Davis Institute and McGill University, Montreal, QC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Francesco","family":"Boin","sequence":"additional","affiliation":[{"name":"UCSF Scleroderma Center, University of California San Francisco, San Francisco, CA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Voon H","family":"Ong","sequence":"additional","affiliation":[{"name":"University College London Medical School, Royal Free Hospital, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marco","family":"Matucci-Cerinic","sequence":"additional","affiliation":[{"name":"Division of Rheumatology, University of Florence, Florence, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nezam","family":"Altorok","sequence":"additional","affiliation":[{"name":"University of Toledo Medical Center, Toledo, OH, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marina","family":"Scolnik","sequence":"additional","affiliation":[{"name":"Rheumatology Section, Hospital Italiano de Buenos Aires, Buenos Aires, Argentina"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mandana","family":"Nikpour","sequence":"additional","affiliation":[{"name":"The University of Melbourne and St. Vincent\u2019s Hospital, Melbourne, VIC, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ankoor","family":"Shah","sequence":"additional","affiliation":[{"name":"Duke University Medical Center, Durham, NC, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Janet E","family":"Pope","sequence":"additional","affiliation":[{"name":"Western University, London, ON, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dinesh","family":"Khanna","sequence":"additional","affiliation":[{"name":"University of Michigan Scleroderma Program, Ann Arbor, MI, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ariane L","family":"Herrick","sequence":"additional","affiliation":[{"name":"Centre for Musculoskeletal Research, The University of Manchester and Salford Royal NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, UK"},{"name":"NIHR Manchester Musculoskeletal Biomedical Research Centre, Central Manchester NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, 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