New guidelines for systemic sclerosis and Behçets

This article has been kindly written by Lindsay Turner, Clinical Guidelines Programme Manager, British Society for Rheumatology.

In this article we delve into two new British Society for Rheumatology (BSR) guidelines to learn about the overarching management principles, as well as the importance of psychological care.

Systemic sclerosis

The update to the BSR systemic sclerosis guideline, which now includes paediatric and adolescent patients, as well as adults, demonstrates major progress in management of systemic sclerosis since the previous 2016 version. There are better opportunities to diagnose the disease early and areas such as interstitial lung disease, pulmonary hypertension, hypertension and digital ulcer management have seen particular advancement.

Professor Christopher Denton, who led the guideline development, said: “Systemic sclerosis is a severe, complex multi-system disease, and quite uncommon, so the guideline is particularly important and focuses on management within the structures of the NHS”.

To accompany the guideline, two figures make up a summary sheet to demonstrate both the overarching management principles and the organ-specific treatment considerations, available as a handy downloadable pdf.

Professor Ernest Choy, Editor in Chief of Rheumatology, commented on the summary sheet: “The organ-specific way of looking at how best to manage patients is really wonderful and a fantastic help.”

Behçets

For the first time ever, BSR have also published a living guideline, co-published with the British Association of Dermatologists, for the management of people with Behçets. Also covering the whole life course, this comprehensive guideline emphasises the multi-system nature of this complex, chronic, inflammatory condition.

The guideline is accompanied by a plain English summary and an updated patient information leaflet.

The living guideline nature of this publication ensures that it will be kept up-to-date to account for the rapidly emerging evidence in management of Behçets.

Guideline lead, Ruth Murphy, explains:

“It's actually a very difficult diagnosis to make and we emphasise that in this guideline. There isn't a blood test, there isn't a genetic test it. We're looking for a constellation of clinical features, which accrue over time… we hope that these guidelines actually make it clear that we're trying to help the whole of the healthcare workforce understand more about this disorder”.

Co-lead, Robert Moots also adds:

“I'd like these guidelines to be raising awareness. It's you, in primary care, in other specialties, who sees a patient, thinks of the diagnosis and can then be aware of the sorts of things that can be done; the specialists around that can help you, because that's really the crucial thing.  Within the guidelines there's plenty of advice about relatively easy and straightforward ways to manage symptoms. Ulcers in the mouth, skin problems, genital ulcers. Just by thinking of the disease, just by being aware and providing simple treatments, that can provide a lot of help to patients.”

A key recommendation, relevant to the point of diagnosis for Behçets, states:

• Provide people with Behçets, at the time of diagnosis, with a patient information leaflet (e.g. from the British Association of Dermatologists: www.skinhealthinfo.org.uk/a-z-conditions-treatments) and engage people with Behçets, throughout their treatment pathway, in conversation about their condition to ensure shared decision making.

Find more about diagnosis of Behçets in section 5.5 of the full guideline.

Psychological care

Both of these new guidelines place an emphasis on providing appropriate psychological care for people with these conditions. In systemic sclerosis, initiatives to support self-management as well as structured psychological assessment and intervention were highlighted as being relevant when considering the disease impact on everyday life and function.

In the Behçets living guideline, the psychological difficulties for people with Behçets are discussed, and there are four recommendations specifically related to psychological care. A psychological management algorithm is also included, providing a stepped-care model for providing psychological care for people with Behçets.

Find out more

You can now listen to episodes of the BSR Talking Rheumatology podcast to hear interviews with the guidelines’ authors and their key take-home messages. These interviews are also available in video format on the BSR YouTube channel.