Patient Experience of SSc-RP
Research type
Research Study
Full title
Exploring the patient experience of Raynaud’s phenomenon in systemic sclerosis
IRAS ID
213953
Contact name
John D Pauling
Contact email
Sponsor organisation
Royal United Hospitals NHS Foundation Trust
Duration of Study in the UK
0 years, 7 months, 1 days
Research summary
Raynaud's phenomenon (RP) is the term used to describe episodic narrowing of the blood vessels supplying the skin of the extremities (fingers, toes etc.) in response to cold exposure and emotional stress. Attacks of RP are associated with digital colour changes, pain, numbness and loss of function. RP is a feature of systemic sclerosis (SSc) and has been highlighted as one of the commonest and most intrusive symptoms in the disease. Little is known about the patient experience of RP in SSc. Patient reported outcome measures for RP in SSc (such as the Raynaud's Condition Score diary) have been developed by clinicians but might not accurately reflect the patient experience of RP in SSc and there is consensus within the SSc research community that additional work is needed to better understand the patient experience of RP in SSc (SSc-RP). The present study shall explore the patient experience of SSc-RP by undertaking focus groups of patients with SSc and applying qualitative research methods of transcriptions to identify themes and domains to describe the patient experience and impact of SSc-RP.
It is expected this study shall support the development of a conceptual framework for a novel PRO instrument for assessing the severity and impact of RP in SSc.
REC name
London - Hampstead Research Ethics Committee
REC reference
16/LO/1617
Date of REC Opinion
2 Sep 2016
REC opinion
Further Information Favourable Opinion