Experts at Newcastle University have devised a pioneering app which allows their medical team to simply monitor the progress of their patients’ disease and predict suitable drug treatment.
The work with patients with Primary Biliary Cholangitis (PBC, previously known as Primary Biliary Cirrhosis) has been led by Professor Dave Jones and supported by NIHR Biomedical Research Centre at Newcastle upon Tyne Hospitals NHS Foundation Trust and Newcastle University.
George Freeman MP met with patients who with their specialists can now use the app to monitor their condition and discussed its use with Professor Jones who is using it to manage patients as far away as San Francisco, America.
As well as offering reassurance for the patient and medical team, the app is saving NHS resources, improving patient care and in a recent academic paper has been shown to be as accurate as a liver biopsy.
The app is a development that’s emerged from the unique collaboration of healthcare expertise and research excellence at the CRESTA clinic (Clinics for Research and Service in Themed Assessment). These are led and managed by the Newcastle Hospitals and bring in expertise from Newcastle University and are located on the ground floor of the Biomedical Research Building.
The CRESTA clinic provides enhanced care for patients with PBC through a 'one-stop' multidisciplinary visit to better serve the needs of a diverse patient population, ranging from young working mums to older patients with complex needs. The clinic is also geared for recruitment of such patients for participation in early phase trials - Newcastle is one of the world’s leading centres for trials of new therapy in PBC.
Mrs Karen Young, 50, from Newbiggin-by-the-Sea, Northumberland, is one of those being seen at the clinic and said: “I was diagnosed with PBC 11 years ago and recently moved to the North East, being seen at the CRESTA clinic since October.
“The access to expert healthcare meant I was re-assessed, changed medication which is now taken less frequently but at a higher dosage and this means I have better control of my condition. These are experts who understand the severity of my symptoms, when I say I am fatigued I am not just tired but like a toy with no batteries.
"I have also taken part in a clinical trial which I feel is really important because without this kind of work we’ll never find a cure or find out why PBC happens.
“Changing my medication, getting better control of my illness, of the itching in particular and new developments like the app are all important steps for patients like myself to feel that we have control of the condition and of our treatment.”
Life Sciences Minister George Freeman said: “Digital diagnostics like this are essential in giving patients information on their condition, whilst helping clinicians to monitor their progress remotely and in real time so they can provide quick and effective treatments.
"The Government’s continued investment in the £1 billion a year National Institute for Health Research, through its Biomedical Research Centres and Units across the country, is making this possible and bringing 21st Century technologies to the frontline of the NHS."
PBC (Primary Biliary Cholangitis) is a long-term, auto-immune condition which affects the liver. In simple terms, the body thinks that the bile ducts within the liver are foreign objects and tries to destroy the lining to these ducts. These bile ducts are designed to allow the flow of bile from the liver, so damage of these ducts leads to poor drainage of bile acids. The bile acids then leak from the bile ducts, damaging surrounding liver cells, which then causes inflammation and scarring in the liver.
PBC is relatively rare affecting up to 1 in 3–4,000 people and of those 9 out of 10 are women.
While there is a genetic element to PBC, it is thought to be within the auto-immune family of conditions and we do not yet know what causes PBC or what can cure it.
The diagnostic tool for PBC is the AMA blood test (antimitochondrial antibody) and it is 95% accurate.
The app was designed by Dr Gwilym Webb at NIHR BRU Birmingham and Professor Jones initially for use by clinicians. It assesses five measurements routinely taken in a standard blood test. Publishing in the academic journal Hepatology, these results were shown to be 95% accurate in predicting whether the condition is deteriorating so that the patient would need a transplant within 15 years.
Dave Jones, Professor of Liver Immunology at Newcastle University and Consultant Hepatologist at the Newcastle Hospitals, as well as NIHR Dean for Faculty Trainees, said: “Uniquely the work in the NIHR Biomedical Research Centre puts the patients at the centre of their care, joining up the expertise around them. So we asked the patients what they wanted and one of the answers was that they wanted easier access and accurate results.
“This app combined with the standard blood test gives 75% of patients the reassurances that they have no risk and they can be managed by their GP. For others, it gives their medical team an indication of whether they will need a transplant or not within a 5 to 15 year window.
“The functioning of the BRC to bring together patients, academics and medical staff has allowed us to transform the patients’ wish into a product quickly and simply.”
Professor Jones’ work is part of the Newcastle Academic Health Partners, a collaboration involving Newcastle Upon Tyne Hospitals NHS Foundation Trust, Northumberland, Tyne and Wear NHS Foundation Trust and Newcastle University. This partnership harnesses world-class expertise to ensure patients benefit sooner from new treatments, diagnostics and prevention strategies.
Symptoms of PBC
Primary biliary cirrhosis (PBC) often doesn't cause any symptoms in the early stages and many people are only diagnosed with the condition during tests carried out for another reason.
People who have symptoms of PBC may experience
Fatigue (extreme tiredness) – this is the most common symptom, and can have a significant impact on your daily activities
Itchy skin– this can be widespread or it can only affect a single area; it may be worse at night, when in contact with fabrics, when warm, or during pregnancy
|Dry eyes and mouth|
Problems sleeping at night and feeling very sleepy during the day
Pain or discomfort in the upper right corner of the tummy
Dizziness when standing up (postural or orthostatic hypotension)
Facts courtesy of NHS Choices
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