A Scleroderma and Raynaud’s UK (SRUK) national survey to explore rheumatologists’ awareness, approaches to diagnosis and management and training needs within systemic sclerosis

Abstract

Lay Summary: What does this mean for patients? Systemic sclerosis (SSc)/scleroderma is a rare, complex and life-limiting long-term health condition affecting the skin and multiple internal organs. Rheumatologists manage the care of people living with SSc; however, given the rarity of the condition, it is likely that individual rheumatologist’s knowledge and experience is variable. Scleroderma and Raynaud’s UK (SRUK) is familiar with the experiences and needs of those living with SSc but has limited information on rheumatologists’ views of the condition. SRUK wished to explore the knowledge, awareness and experiences of SSc among rheumatologists along with their approach to managing and coordinating care and the need for education and training in SSc. To establish this, SRUK surveyed 150 UK rheumatologists. A total of 64% reported being unsure about SSc’s signs and symptoms, ≈2% had not heard of SSc and 19% did not fully understand what it does to the body. Most (87%) rheumatologists said they would value further training in SSc care. Our findings reveal a gap in the awareness and knowledge of SSc among some UK rheumatologists, which could affect patient diagnosis and care. There was an appetite for further education and training as part of continued professional development.