Journal article

Patient-reported outcome instruments for assessing Raynaud's phenomenon in systemic sclerosis: A SCTC vascular working group report

John D Pauling, Tracy M Frech, Michael Hughes, Jessica K Gordon, Robyn T Domsic, Marina E Anderson, Francesca Ingegnoli, Neil J McHugh, Sindhu R Johnson, Marie Hudson, Francesco Boini, Voon H Ong, Marco Matucci-Cerinic, Nezam Altorok, Marina Scolnik, Mandana Nikpour, Ankoor Shah, Janet E Pope, Dinesh Khanna, Ariane L Herrick

JOURNAL OF SCLERODERMA AND RELATED DISORDERS | SAGE PUBLICATIONS LTD | Published : 2018

Abstract

The episodic nature of Raynaud's phenomenon (RP) in systemic sclerosis (SSc) has led to a reliance on patient-reported outcome (PRO) instruments such as the Raynaud's Condition Score (RCS) diary. Little is known about the utilisation in routine clinical practice and health professional attitudes towards existing PRO instruments for assessing SSc-RP. Members of the Scleroderma Clinical Trials Consortium Vascular Working Group (SCTC-VWG, n=28) were invited to participate in a survey gauging attitudes towards the RCS diary and the perceived need for novel PRO instruments for assessing SSc-RP. Nineteen SCTC-VWG members (68% response rate) from academic units based in North America (n=9), Europe ..

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