British Society of Rheumatology announce plans for new revision of Systemic Sclerosis Guideline

What is the BSR guideline and why is it needed?

Systemic Sclerosis is a life-limiting condition that can negatively affect the quality of life of patients, which has the highest mortality of any of the autoimmune rheumatic diseases. BSR guidelines set best practices in clinical care within individual rheumatological conditions, and provide a practical roadmap for the management of systemic sclerosis, encompassing areas such as diagnosis, treatments and when patients should be referred to other specialities.  

The guidelines are accredited by the National Institute for Health and Care Excellence (NICE), which embeds them within the NICE recommendations for clinical care. This means that they not only provide healthcare professionals with accessible and practical guidance on how they should manage the condition, but they also set the expectations for care that patients should expect to receive.

Why is the guideline being updated? What will it mean for patients?

The current BSR SSc guideline was published in 2016, providing a roadmap for the diagnosis and treatment of people with SSc. Since 2016 there have been many clinical trials giving rise to new treatments licensed and approved for use in scleroderma, changes in NHS England prescribing policies, and new knowledge relating to outcomes in those living the condition. This means that the guideline must be reviewed and refreshed to provide healthcare professionals with the most up-to-date information and ensure that patients of all ages continue to receive the safest, most effective treatments and best standard of care possible.

Who is responsible for updating the guideline? 

A Guideline Working Group has been formed to review the most recent guideline, as well as the areas that the updated guideline should focus on. This group is made up of Rheumatologists (including paediatric Rheumatologists) with a specialist interest in scleroderma, along with specialists from related clinical areas, patients, and patient organisations (SRUK). Initial work by this group has identified the areas that the updated guideline will focus on.

What areas will the guideline cover?

The new guideline will focus on defining best practice in all care settings where patients of all ages (including children and young people) with scleroderma are seen. The general organisation and delivery of services within England and the devolved nations will be considered in order to ensure standardised, high quality and equitable care across the UK.

The guideline aims to outline best practices in the following areas:

• The best approach to timely identification and diagnosis of systemic sclerosis, and specialist referral.
• The classification of patients with systemic sclerosis, for stratified medicine and management.
• The best treatments for diffuse cutaneous systemic sclerosis.
• The drug and non-drug treatment of organ-based complications of systemic sclerosis, to help ensure that patients are provided the safest and most effective treatments for complications related to the condition.
• Screening for other malignant diseases in individuals living with systemic sclerosis.
• Approaches to non-pharmacological care and treatment, including vitamins, supplements, massage (manual lymph drainage), and psychological support after diagnosis and during established disease.

It is hoped that the new guideline will help to harmonise care and overcome current challenges in the management of SSc, whilst clearly defining best practices to ensure all people with SSc receive effective care and treatment.

Find out more

The full scope for the updated BSR SSc guideline can be accessed now in the BSR open-access journal, Rheumatology Advances In Practice here, and you can read more about the revised guideline on the BSR website here.