Ep 33. GUIDELINES - Ed Vital, Eve Smith & colleagues on the 2026 Lupus life course guideline

In this episode of Talking Rheumatology, Ernest Choy interviews members of the Lupus guideline working group to discuss key updates in the 2026 life course lupus guideline, including new therapies, holistic care approaches, and recommendations spanning paediatric to adult services. Hear how these evidence-based changes aim to improve outcomes for people with lupus and support clinicians in delivering high-quality lupus care.

Find the video version of this episode on the BSR YouTube channel. 

Read the full guideline and download the handy infographic and audit tool here. 

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BSR is the UK's leading specialist medical society for rheumatology and MSK health professionals. To discover how we can support you in delivering the best care for your patients, visit our website. 

Transcript

Introduction   
 You’re listening to the Talking Rheumatology podcast, brought to you by the British Society for Rheumatology. 

 Ernest Choy   0:15
 Welcome to this episode of the BSR's Rheumatology Roundtable, where I'll be speaking to the authors of the new 2026 Life Course Lupus Guideline. I'm Ernest Choy, Editor in Chief of Rheumatology, Oxford, and joining me today are members of the working group, and I'm going to ask them to introduce themselves in turn.
 So, first of all, Ed.

 Edward Vital   0:40
 Hi, my name is Ed Vital. I'm a rheumatologist and a professor of translational medicine at the University of Leeds.

 Ernest Choy   0:47
 Yuz.

 Md Yuzaiful Md Yusof   0:49
 Hello, my name is Yuzaiful Yusof. I'm an associate professor in rheumatology and consultant at Leeds Teaching Hospital, and I'm the Co-Chair of the guideline.

 Ernest Choy   1:02
 Liz.

 Liz Lightstone   1:04
 Hi, I'm Liz Lightstone. I'm Prof of Real Medicine at Imperial College London with a specialist interest in lupus nephritis.

 Ernest Choy   1:10
 Eve.

 Eve Smith   1:12
 Hi, my name's Eve Smith. I'm a consultant paediatric rheumatologist and a clinical academic based up in Glasgow, and I led the paediatric component of the guideline.

 Ernest Choy   1:21
 And last, but not least, Debbie.

 Debbie Kinsey   1:24
 Hi, my name is Debbie Kinsey. I'm the Health Information Policy and Research Manager at Lupus UK.
Ernest Choy   1:31
 Welcome everybody. So in this episode, we'll provide a summary of the key take-home messages from the updated guideline and how we can help clinicians and how it hopes to benefit patients. So let me come to Ed first. Ed, could you start by giving us an overview of the guideline? And why was an update necessary?

 Edward Vital   1:53
 Yeah, sure. So the last guideline for lupus was written in 2017, based on a literature search, I guess, a year or two before that. So we're talking about 10 years of change in lupus evidence and management. And that's been a big 10 years, I think, for the field of SLE.
 Back in the last guideline, we had one licenced biologic, belimumab, most of the other drugs unlicensed, all sorts of problems and issues in general management of people with lupus. So our first aim really was to just bring that up to date. We've had
 multiple new drugs that have been approved since then, some of which have NICE approvals, and there are multiple more in the pipeline. But there were some other issues that we perceived that, for this rather more complex disease, shall we say, that it brought some additional challenges that we thought could be addressed in a different way with our guideline. So, for example, one of the issues, so lupus nephritis, in the previous guideline, it didn't have its own literature search. A lot of what was stated was referring to other guidelines with new therapies and, especially, lots of things that relate specifically to how the UK delivers its care and what drugs are available, we thought warranted our own review of that. Then there's also the whole-life-course aspect of it. So that's something that the BSR emphasises, I think, more than other guideline-writing organisations and with young people being affected so much by lupus, we also thought that was really relevant to us. So we wanted to include that. And then there were other aspects like, I suppose, an increasing recognition in the field of lupus. A lot of the outcome isn't just about choosing the right drug or making a certain diagnostic choice on an individual patient. It's about sort of the way services are delivered and the way care is provisioned by departments and hospitals. And we wanted to write about that aspect too. So we wanted to review the whole thing and bring it in these aspects of care.

 Ernest Choy   4:15
 Fantastic. So can you highlight for some of the key recommendations people can find in the guideline, especially how they may differ from the previous versions?

 Edward Vital   4:26
 Yeah, sure. So, it's pretty big. So, the old guideline was quite long and had a big literature review and we tried not to repeat things that we thought had changed too much. So if there were areas where we thought the old guideline was okay or maybe where another guideline already covered it, we tried not to address those from scratch. But even so, we ended up with 102 recommendations. So it is a big document and there's an awful lot of literature reviewed in there. As I say, there's a whole section on how care is organised, which is something, you know, we want people to think about, which is whether the policies and processes in their departments need to change, not just what they do when they see a patient. There are big sections on non-pharmaceutical care, so things like supportive treatment, the roles of sun protection, lifestyle management, supportive services. So, things like access to clinical psychology, specialist nurses, MDT approaches, advice on how specialist clinics should be provided.
 Treat-to-target is now featuring here quite a bit, because that's just become a lot more prominent in the field of lupus. And alongside that, what you also see is more consciousness of limiting exposure to glucocorticoids and trying to keep doses lower and more rational. And there there are separate sections on cutaneous lupus and on nephritis.

 Ernest Choy   6:10
 Great, thanks. I want to come to Eve next as a paediatric rheumatologist. Why do you think it's important that this guideline was expanded to the whole life course?

 Eve Smith   6:21
 Thanks. So, the paediatric community were really, pleased that we were invited to be part of this. And really, you know, about 20% of patients will develop lupus in childhood and not having specific guidance is really, I would say, a barrier to sort of best practise and best care. And the last paediatric-specific guidelines,
 were published in 2017 with the literature reviews done around sort of 2012, 2013. So that guideline was really in drastic need of an update, really. I think, you know, for rare diseases like childhood lupus, waiting for preferred evidence can often mean accepting worse outcomes. So we really tried to be really pragmatic from a paediatric point of view, you know, acknowledge the gaps, but also be pragmatic and still be clear that lack of trials or paediatric specific evidence didn't mean that that should be a barrier to the guidelines being applied, particularly because children tend to have much more active disease, they have more damage, they have higher standardised mortality rates. I think some of the highlights for the paediatricians are really, you know, again, going back to that explicit endorsement of treat-to-target in children with lupus. So previous guidelines didn't mention that. There's been a huge effort led internationally and paediatric specific targets which are out there. So that's in the guideline. And really much stronger language around steroid minimization, you know, withdrawal, you know, setting thresholds and, again, inclusion of children within the lupus nephritis guidelines and not, you know, putting them as a sort of afterthought. And the other thing that's in the guideline is this formal recognition of transitions being a really high-risk period as well. And that we all, that's come down to all of us, you know, across the whole community to manage that properly, because this is a time where things can really fall down and they can have long lasting effects. So I would say that they are some of the main highlights really from a paediatric perspective.

 Ernest Choy   8:17
 Thanks, Eve.
 Ed mentioned the inclusion of lupus nephritis in this iteration of the guideline. Liz, as one of the renal experts in the working group, could you explain what recommendations our listeners need to be aware of in this area?

 Liz Lightstone   8:33
 So I think the key recommendation is that, if you've diagnosed lupus nephritis, and you should always be on the lookout for it and do an early biopsy, then you should start with what we call triple immunosuppression. So the combination of MMF or cyclophosphamide, and steroids, aiming to minimise the steroids, and either, depending on which combination you use, belimumab, obinutuzumab, or a CNI. And that's a real change because there's been a tendency to do a step-up, start with mycophenolate and cyclophosphamide with steroids, and then add in the biologic or the CNI. The very strong recommendation based on the evidence from trials is to start with that triple therapy and everyone should be on hydroxychloroquine as well. So I think that is a big change and something that really needs to be adopted by the community rapidly.

 Ernest Choy   9:27
 Thank you. So we've heard about some of the key recommendations in this new guideline, but, Debbie, what difference would this new guideline make for the patients?

 Debbie Kinsey   9:38
 Yeah, so I think given there's been such huge progress since the previous guideline, the update means that people can feel reassured that their care is based on the most up-to-date evidence that we have. And that's no matter where you live in the UK or whether you live close to a specialist centre, because the guidelines are available to everyone across the UK. And people can also talk to their healthcare professional about the guidelines. And that can really help to understand what they can expect from their care, to understand the kind of thought process, kind of what's going on behind that decision making, what their care and treatment should be. And that can really help with those shared decision-making conversations. And so we really hope that the updated guidelines will make a big difference in supporting everyone to have excellent evidence based care about where they live in the UK and also for lupus services to be designed based on best practise evidence with those new organisation-of-care recommendations that Ed mentioned.

 Ernest Choy   10:45
 Great. Yuz, could you explain a bit about how the guideline was developed?

 Md Yuzaiful Md Yusof   10:51
 So the guideline was developed based on the BSR guidelines protocol using the GRADE and AGREEII methodologies. So we initially formed our multidisciplinary group, consisting of paediatric, adolescent and adult rheumatologists. We also invited experts in other specialties, including nephrologists and also a dermatologist and a GP. We also expanded our team to also include pharmacists, specialist nurses and other allied healthcare professionals. And we also have a representative from Lupus UK and also Expert by Experience members.
 So following the formation of the guidelines, we are grateful to the BSR for providing us support to undertake the systematic literature reviews, which were led by three researchers from Keele University and also supported by our guideline working group members.
 Because the scope is quite broad, we divided our members, 35 of us, into six sections and all of us working in this group, we then formulated the guidelines based on 7 online meetings and then we also underwent 3 Delphi rounds to reach the final consensus. And then, following this, drafts and formulation. These guidelines then underwent peer reviews. So 3 peer reviews by the BSR Guideline Steering Group, the review by the rheumatology journal, and also from open consultation.

 Ernest Choy   12:40
 So with such a broad group of people who developed the guideline, how will the guideline be used by the wider MDT in clinical practice?

 Md Yuzaiful Md Yusof   12:50
 Yeah, so in the guidelines, because this is the first life course guideline in SLE in the UK, our scope is also broad, not just composing of the treatment, but also from the identification of suspected patients all the way through to the delivery of care. And we also include various stakeholders. So, in these guidelines, each of the stakeholders, including the patient, would have had interest in some section of the 102 recommendations that we provide for the delivery of care.

 Ernest Choy   13:31
 Right.
 Eve, are there any other tools to help listeners to implement the guideline.

 Eve Smith   13:38
 Yeah, so obviously we've got the full guideline, which is obviously a very comprehensive, you know, summary of all the evidence. So, if somebody's interested in trying to really find the evidence base around a particular topic, that's a great reference document. I think the document that people will use more sort of day-to-day and maybe even have it sort of with them to look at in clinic might be the executive summary which is really practical, easy to navigate. It's got really clear figures. So there's a flow diagram around lupus in general, and then there's also a lupus nephritis diagram, which really summarise the key pathways and care pathways and guideline really. We've also produced an audit tool which can allow services to try and think about how their practice aligns with these guidelines to audit against that and could help to support quality improvement. And I think that these resources really will be useful across the whole life course for paediatric services and for adult services and will help with that sort of joined up and smoother transition of patients as well. So there's quite a lot of resources for you to have a look at and when you've got some time.

 Ernest Choy   14:48
 Great. And finally, coming back to you, Ed, what do you want to encourage listeners to pay particular attention to in the new guideline?

 Edward Vital   14:51
 So I think now I would say that writing the guideline is just the first step. It's hard to say because, you know, we're tired. It was hard work, but we have actually got a lot more to do because a guideline won't do anything unless it's implemented and we can't think just because we write things down, that's necessarily what's going to
 happen. So to try to improve this implementation in a way that benefits patients, we're thinking of a couple of things. One is developing educational resources. For example, the BILAG group and BSR special interest group developed an educational course about lupus, which we did the first version of in January 2026. And a lot of it was based around what's in this guideline. And we hope that will be the first of many to be repeated in future to teach people how to use it. I would emphasise to clinicians that, there is an executive summary, you can just read the statements, but Lupus is complicated and the evidence is complicated and there isn't really always a straight answer to each question. And sometimes reading the narrative of the different things that we thought about when we wrote a statement is important and how to adapt it to your individual patient. And then looking to the future, you know, we've talked about how we hope that we can help to provide better services at a hospital level rather than individual patient level. But once again, just because we write something down doesn't necessarily make it happen and we need
 people in their departments to take the initiative to then try to reorganise services. And so one thing we're thinking about now is how we can support that instead of just education about the disease and the treatment, can we support people to help what they need to do to change the provision of lupus care?

 Ernest Choy   17:00
 That's wonderful. Thank you very much. I want to thank everybody who has joined me today The BSR guidelines and linked resources are available from the BSR web pages and I look forward to welcoming you all to future episodes of Rheumatology Roundtable. Thank you.

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