New UK guidelines for diagnosing, treating, and supporting people with lupus

There are lots of different guidelines for lupus across the world. It’s important that there are UK-specific guidelines, because healthcare systems and available treatments can be different in different countries.

The first UK-based guidelines for systemic lupus were published in 2017. They needed to be updated because:

• There are lots of new treatments and approaches.
• The 2017 guidelines did not include children or young people.
• People were sometimes receiving different care depending on where they lived, so it is important to make it more consistent.

The guidelines were updated by a team of experts called a “working group”. This included people living with lupus, doctors, GPs, pharmacists, and specialist nurses. Lupus UK also took part in the working group.

The team looked at all the latest research about lupus and considered how good it is, what it says about effective treatment, any risks, and how the healthcare system works. They discussed and agreed recommendations based on this evidence. Other experts not involved in the update also review the recommendations to give feedback. If there was not enough research in an important area, the expert group made recommendations based on their experience.

Lupus is a complex condition, so the guidelines are very long! There are 102 recommendations, split into sections including:

• Diagnosis
• Monitoring (check-ups and assessments)
• Non-medicine treatment & management (called “non-pharmacological approaches”). This includes things like mental health care and sun protection.
• Treatment with medicines
• Treating lupus of the skin
• Treating lupus of the kidneys (lupus nephritis)
• How healthcare services should be organised for people with lupus

The guidelines don’t include specific information about what treatments are best to use in pregnancy and family planning. However, there is another BSR guideline which has lots of detail about this.

Over the next few months, Lupus UK will create information resources on particular sections, like what check-ups you should expect for your lupus.

There are three important updates from the old guidelines:

1. Treatments

New treatments have been included, but also new ways of approaching treatment. For example, using less steroids and more combination therapy, which is when different medications are used together.

2. Children and young people

Children and young people have been included in the guidelines for the first time. This is really important because 1 in 20 cases of lupus begin in childhood, and it is vital that there is good understanding of the best way of managing lupus in children.

3. Organisation of care

For the first time there are recommendations about how healthcare services should work for people with lupus, like getting quick access to advice if you are having a flare or a medicine side effect.

The guidelines are written mainly for doctors and other healthcare professionals, so they are written in medical language. But they are available for everyone to read, and you can read them here: https://academic.oup.com/rheumatology/article-lookup/doi/10.1093/rheumatology/keag223

There are lots of ways you might find the guidelines helpful. The guidelines may help you to:

• Understand what you can expect from your care and how doctors and nurses are thinking about treatment decisions.
• Talk to your doctor and make shared decisions. You can ask them about the guidelines and what they mean for you as an individual.

Over the next few months, Lupus UK will also create information resources on particular sections, like what monitoring you should expect for your lupus, in non-medical language. We hope this will help you to understand the guidelines and what they mean for you.

Lupus UK are really pleased that the guidelines have been updated and published. We will also use them in our work:

• We will create some new information resources based on the guidelines. For example, on how often you should get check-ups for your lupus and what those check-ups should include.
• We will also update our current information if there are any changes to recommended care.
• They will be used as a resource to help us with educating healthcare professionals about lupus diagnosis and treatment.
• When we are trying to make change in the healthcare system, we will use the guidelines to help us show what people need as recommended care.

It will take some time for any changes in the guidelines to have an impact, especially recommendations about how healthcare services should be organised. Guidelines are “best practice”, but they are not a rule that everyone must follow like a law. This means some of the guidelines, like having a short wait time for diagnosis, will take different organisations working together to make change.