The patient experience of Raynaud's phenomenon in systemic sclerosis

Rheumatology (Oxford). 2019 Jan 1;58(1):18-26. doi: 10.1093/rheumatology/key026.

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.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't
  • Review

MeSH terms

  • Adult
  • Body Image / psychology
  • Female
  • Humans
  • Male
  • Quality of Life
  • Raynaud Disease / etiology
  • Raynaud Disease / psychology*
  • Scleroderma, Systemic / complications*
  • Social Participation / psychology