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 article

10 Citations (Scopus)
16 Downloads (Pure)

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.

Original languageEnglish
Article numberkey026
Pages (from-to)18-26
Number of pages9
JournalRheumatology
Volume58
Issue number1
Early online date12 Mar 2018
DOIs
Publication statusPublished - 1 Jan 2019

Fingerprint

Raynaud Disease
Systemic Scleroderma
Social Participation
Body Image
Practice Management
Practice Guidelines
Quality of Life
Clinical Trials
Morbidity
Therapeutics

Keywords

  • 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

Cite this

Pauling, J. D., Saketkoo, L. A., Matucci-Cerinic, M., Ingegnoli, F., & Khanna, D. (2019). The patient experience of Raynaud's phenomenon in systemic sclerosis. Rheumatology, 58(1), 18-26. [key026]. https://doi.org/10.1093/rheumatology/key026

The patient experience of Raynaud's phenomenon in systemic sclerosis. / Pauling, John D; Saketkoo, Lesley Ann; Matucci-Cerinic, Marco; Ingegnoli, Francesca; Khanna, Dinesh.

In: Rheumatology, Vol. 58, No. 1, key026, 01.01.2019, p. 18-26.

Research output: Contribution to journalReview article

Pauling, JD, Saketkoo, LA, Matucci-Cerinic, M, Ingegnoli, F & Khanna, D 2019, 'The patient experience of Raynaud's phenomenon in systemic sclerosis', Rheumatology, vol. 58, no. 1, key026, pp. 18-26. https://doi.org/10.1093/rheumatology/key026
Pauling JD, Saketkoo LA, Matucci-Cerinic M, Ingegnoli F, Khanna D. The patient experience of Raynaud's phenomenon in systemic sclerosis. Rheumatology. 2019 Jan 1;58(1):18-26. key026. https://doi.org/10.1093/rheumatology/key026
Pauling, John D ; Saketkoo, Lesley Ann ; Matucci-Cerinic, Marco ; Ingegnoli, Francesca ; Khanna, Dinesh. / The patient experience of Raynaud's phenomenon in systemic sclerosis. In: Rheumatology. 2019 ; Vol. 58, No. 1. pp. 18-26.
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