Improving diagnosis and care

Clinical care guidelines

Guidelines are guidance documents to support healthcare professionals with the investigation, management and prevention of diseases and conditions. They should represent a consensus of best practice based on the available evidence at the time of preparation. PSC Support is an active contributor to the development of guidelines to ensure that they cover aspects of diseases important to patients and of course, to ensure that PSC is always considered. This is important because PSC is a rare and complex disease, and must not be overlooked in favour of the more common liver diseases.

PSC Management Guidelines

PSC Support is working with leading hepatologists and UK PSC to develop new management guidelines based on the most current evidence.

Current European guidelines for PSC management were published in 2009.

Up to date guidelines are important because patients need to know what to expect in their care and clinicians need to know how to manage PSC, and critically, the optimum time for referral to a PSC specialist. There is variation in clinical care; not only between countries around the world, but between hospitals within the UK. PSC is a rare condition, and it is important to patients that there are clear, evidence-based recommendations in place for their care and monitoring. These new guidelines are for healthcare professionals led by the British Society of Gastroenterology and UKPSC.

Abnormal Liver Blood Test Guidelines

Updated guidelines on the management of abnormal liver blood tests, commissioned by the Clinical Services and Standards Committee (CSSC) of the British Society of Gastroenterology (BSG) have now been published. The original Guidelines, which the document supersedes, were written in 2000 and have undergone extensive revision by members of the guidelines Development Group (GDG). PSC Support Chair of Trustees, Martine Walmsley, was an active contributor to the GDG.

Martine said, 'As these new BSG Guidelines will be used by GPs who are often the first port of call for an undiagnosed PSC patient, we worked hard to raise the profile of PSC. This comes at a time when the emphasis is on the early detection of more common liver diseases such as fatty liver disease, which can be prevented through simple lifestyle changes.

There is no diagnostic blood test for PSC, and making a diagnosis can sometimes be a case of putting pieces of a puzzle together. The pattern of abnormality in the blood tests is an important clue, and the guidelines show what to consider when a cholestatic pattern of abnormality is found. GPs will now also look at the context of the patient, such as their clinical history including Inflammatory Bowel Disease and/or other autoimmune diseases. In an ideal world, we would want all such patients to be sent immediately for an MRCP; in the real world they should at least be referred for specialist management/tests.

PSC might be rare, but it is one of the leading indications for liver transplantation. Earlier diagnosis is not only critical for starting regular symptom management and surveillance due to the increased cancer risks associated with PSC, but also for patients with early stage disease to be able to access clinical trials and research studies.'

European Reference Network Outcomes, Pathways & Guidelines Working Group

European Reference Networks (ERNs)  are virtual networks involving healthcare providers across Europe. They aim to tackle complex or rare diseases and conditions that require highly specialised treatment, knowledge and resources. The first 24 ERNs (including an ERN for rare liver diseases like PSC) were launched in 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 Member States. PSC Support is working with EURORDIS to develop ways to integrate patient views into the development of care guidelines and improvement of care pathways and outcomes, across all 24 ERNs. Martine Walmsley is a member of the Management Board of the Rare-Liver ERN.

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