The patient experience of Raynaud's phenomenon in systemic sclerosis. (12th March 2018)

• Record Type: Journal Article
• Authors: Pauling, John D; Saketkoo, Lesley Ann; Matucci-Cerinic, Marco; Ingegnoli, Francesca; Khanna, Dinesh
• Is Part Of: Rheumatology. Volume 58:Number 1(2019)
• Page Start: 18
• Page End: 26
• Publication Date: 2018-03-12
• Subjects: systemic sclerosis -- Raynaud's phenomenon -- patient experience -- health-related quality of life -- disability -- function -- impact; Rheumatism -- Periodicals; Rheumatology -- Periodicals; 616.723005
• DOI: 10.1093/rheumatology/key026
• Languages: English
• ISSNs: 1462-0324

Abstract

Abstract: RP is the most common manifestation of SSc and a major cause of disease-related morbidity. This review provides a detailed appraisal of the patient experience of SSc-RP and potential implications for disease classification, patient-reported outcome instrument development and SSc-RP clinical trial design. The review explores the clinical features of SSc-RP, the severity and burden of SSc-RP symptoms and the impact of SSc-RP on function, work and social participation, body image dissatisfaction and health-related quality of life in SSc. Where management of SSc-RP is concerned, the review focuses on the 'patient experience' of interventions for SSc-RP, examining geographic variation in clinical practice and potential barriers to the adoption of treatment recommendations concerning best-practice management of SSc-RP. Knowledge gaps are highlighted that could form the focus of future research. A more thorough understanding of the patient experience could support the development of novel reported outcome instruments for assessing SSc-RP.