26 January 2023

With significant advances in the understanding of the underlying disease mechanisms of Sjögren’s syndrome (SS), plus new treatments and products now available, the British Society for Rheumatology is currently developing updated guidelines to provide a pragmatic guide that any non-specialist rheumatologist can pick up and use.

Chair of the guideline working group (GWG), Dr Elizabeth Price, consultant rheumatologist at Great Western Hospital NHS Foundation Trust, explained that the new guidelines, “will advise on best practice standard of care within the UK and cover the patient journey from initial presentation to diagnosis and long-term management, taking into account specifics such as UK access to drugs.”

The most recent BSR guidelines on SS were published in 2017. Since then, the monitoring guidelines on hydroxychloroquine have changed, new eye drops have come to the market and research into the underlying mechanisms of disease has progressed, with new treatments being trialled.

The updated guidelines feature an expanded scope to include children and young people. GWG member, Dr. Coziana Ciurtin, said, “It is particularly hard to spot SS in children and younger adults who may not exhibit dry eyes and dry mouth symptoms due to secretory reserve. A pragmatic and knowledgeable approach is required by the clinician to investigate these cases further despite the lack of sicca symptoms.”

SS is a chronic, auto-immune disease of unknown aetiology for which there is no known curative treatment and it has a significant impact on the quality of life of affected patients. Successful management requires health professionals to personalise the care to the individual. 

Lay member of the GWG, Bridget Crampton, explained what the updated guidance will mean for patients, “SS has such a profound impact on quality of life for patients. It is vital to have this guidance fully up to date so that diagnosis and treatment can be informed by the latest evidence and to help patients, their families and carers to access relevant, age-tailored information, education and support.”

For more detail on what the guideline will cover, read the full scope here. The updated guideline will be published in Spring-Summer 2023.

All BSR guidelines are published in Rheumatology under an ‘open access’ licence and available for free via the British Society for Rheumatology website.

NICE accredits our clinical guideline process; this is valid until December 2023.