The patient experience of Raynaud's phenomenon in systemic sclerosis

John D Pauling, Lesley Ann Saketkoo, Marco Matucci-Cerinic, Francesca Ingegnoli, Dinesh Khanna

Research output: Contribution to journalReview articlepeer-review

33 Citations (SciVal)
62 Downloads (Pure)


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.

Original languageEnglish
Article numberkey026
Pages (from-to)18-26
Number of pages9
Issue number1
Early online date12 Mar 2018
Publication statusPublished - 1 Jan 2019


  • Disability
  • Function
  • Health-related quality of life
  • Impact
  • Patient experience
  • Raynaud's phenomenon
  • Systemic sclerosis
  • Humans
  • Male
  • Social Participation/psychology
  • Body Image/psychology
  • Quality of Life
  • Adult
  • Female
  • Scleroderma, Systemic/complications
  • Raynaud Disease/etiology

ASJC Scopus subject areas

  • Pharmacology (medical)
  • Rheumatology


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