%0 Journal Article
%T Patient
%A Ankoor Shah
%A Ariane L Herrick
%A Dinesh Khanna
%A Francesca Ingegnoli
%A Francesco Boin
%A Janet E Pope
%A Jessica K Gordon
%A John D Pauling
%A Mandana Nikpour
%A Marco Matucci-Cerinic
%A Marie Hudson
%A Marina E Anderson
%A Marina Scolnik
%A Michael Hughes
%A Neil J McHugh
%A Nezam Altorok
%A Robyn T Domsic
%A Sindhu R Johnson
%A Tracy M Frech
%A Voon H Ong
%J Journal of Scleroderma and Related Disorders
%@ 2397-1991
%D 2018
%R 10.1177/2397198318774307
%X The episodic nature of Raynaud¡¯s phenomenon in systemic sclerosis has led to a reliance on patient-reported outcome instruments such as the Raynaud¡¯s 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¡¯s phenomenon. Members of the Scleroderma Clinical Trials Consortium Vascular Working Group (n£¿=£¿28) were invited to participate in a survey gauging attitudes toward the Raynaud¡¯s 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£¿=£¿9), Europe (n£¿=£¿8), South America (n£¿=£¿1) and Australasia (n£¿=£¿1) took part in the survey. There was broad consensus that Raynaud¡¯s 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¡¯s phenomenon, habituation to Raynaud¡¯s phenomenon symptoms, evolution of Raynaud¡¯s phenomenon symptom characteristics with progressive obliterative microangiopathy, patient-coping strategies, respondent burden and placebo effect. There was consensus that limitations of the Raynaud¡¯s 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¡¯s phenomenon should be developed with the input of both clinicians and patients (84% agree/strongly agree). Perceived potential limitations of the Raynaud¡¯s Condition Score diary have been identified along with concerns that such factors might impede drug development programs for systemic sclerosis-Raynaud¡¯s phenomenon. There is support within the systemic sclerosis community for the development of a novel patient-reported outcome instrument for assessing systemic sclerosis-Raynaud¡¯s phenomenon
%K Patient-reported outcomes
%K Raynaud¡¯s phenomenon
%K scleroderma
%K survey
%K systemic sclerosis
%U https://journals.sagepub.com/doi/full/10.1177/2397198318774307