07 December 2023
Publication of the scope for the update to our Systemic lupus erythematosus (SLE) guideline demonstrates a major expansion to take a whole life course approach, from childhood to adulthood.
Our previous SLE guideline was published in 2017 and since then there have been rapid advances in the diagnosis, assessment, and therapeutic management of SLE, warranting this update.
Guideline working group (GWG) chair, Ed Vital, said, “There is a need for a consistent approach to the diagnosis and treatment of SLE across the UK to address various issues including inconsistency in diagnostics and access to treatment and how these result in inequity for people with SLE.”
A plain language summary accompanies the scope, particularly aimed at people with SLE. This offers a concise, plain English overview of what this guideline update will mean for patients. Paul Howard, Chief Executive, LUPUS UK and GWG member said:
“SLE is a life-long condition in which the immune system damages the body’s tissues, causing various symptoms including rashes, hair loss, mouth ulcers, joint pain, and overwhelming tiredness. SLE is an uncommon, complex, and poorly understood disease meaning there is often a delay in referral and diagnosis which can lead to greater healthcare utilisation and flares. People living with SLE typically have a significant role in managing and coordinating their healthcare, which can be shared between multiple specialties. This revised guideline will provide new tools to help patients understand what they should expect from their monitoring and treatment, providing additional confidence to ask important questions of their healthcare professionals. I very much welcome this guideline update and am pleased to be supporting its development.”
Eve Smith, Paediatric Rheumatology Consultant leading the paediatric and adolescent sections of the guideline development said:
“Juvenile-onset SLE (JSLE) tends to have a more aggressive presentation and disease course compared with adult-onset. Although SLE and JSLE are uncommon, they have substantial unmet needs since mortality is increased by about 18-fold in JSLE, and 3-fold in adult-onset SLE compared to the general population. I’m delighted that the BSR are extending the scope of this guideline to take a whole-life approach and the update will be welcomed by healthcare professionals, people with SLE, and young people living with JSLE alike.”
The guideline will be developed using the methods and processes outlined in the Creating Clinical Guidelines: British Society for Rheumatology Protocol.
The full scope can be accessed now in the BSR open-access journal, Rheumatology Advances In Practice, here.
Access all the BSR guidelines via the guidelines homepage.