The first UK guideline on the care of adults with systemic lupus erythematosus (lupus) was published by the British Society of Rheumatology at the start of October 2017. The clinical guideline is accredited by the National Institute for Health and care Excellence (NICE) which recognises robust, evidence-based and critically evaluated high-quality processes applied to developing a guideline. The eagerly anticipated guideline covers diagnosis, assessment, monitoring and treatment of patients with mild, moderate and severe lupus and is mainly for health professionals in secondary care. Whilst rheumatologists and clinical nurse specialists in lupus will find it indispensable, nephrologists, immunologists, dermatologists, emergency medicine practitioners, GPs and many trainees will also use the guideline.
Lupus can affect any part of the body and may be difficult to diagnose and treat. It has a major impact on the health and activities of patients and is associated with a significant risk of dying prematurely, as it reduces average lifespan by about 25 years. Lupus is also more common than many realise, affecting nearly 1 in 1000 people in the UK.
The guideline’s recommendations address care of patients with common symptoms such as skin rashes and arthritis as well as those with less common but potentially more serious problems like kidney disease. It covers routine monitoring and treatments that may reduce steroid use and second line approaches if there is a poor response to first choice treatment. It also promotes the referral of patients with the most serious and difficult-to-control disease to specialised lupus centres with experience of new therapies and with multi-disciplinary team backup.
Caroline Gordon, lupus expert, Professor of Rheumatology and lead guideline author comments: “Once my colleagues in the UK implement this guideline, I would expect that patients will experience measurable improvements in care as a result of earlier diagnosis and more appropriate treatment; they can expect more rapid resolution of symptoms, reduction in disease flares and improvements in their quality of life, with fewer long term complications of the disease and its treatment – and, ultimately, improved survival.”
Yvonne Norton, patient representative on the Guideline Working Group said:“Since being diagnosed in 1975, I’ve spent what must amount to years in hospitals and I take a massive amount of medication. I can’t fault the doctors who’ve treated me but it would have been so much better and easier for them, and me, if there had been a guideline to show the right path for them to take.”
Elizabeth MacPhie, Consultant Rheumatologist and Chair of the British Society for Rheumatology’s Standards, Audit and Guidelines Working Group said: “Our guidelines are key to good care in rheumatological conditions. They firmly link the evidence base to clinical practice to help health professionals deliver the right care at the right time to the right patients – which might sound simple but can be a real challenge in a relapsing and remitting condition such as lupus.”
The guideline was published 6 October 2017 in the Rheumatology Journal and is available to view, along with a full suite of guidelines, at www.rheumatology.org.uk/