NEW PIONEERING APP TO HELP CATCH BLOOD CANCER EARLY

Myeloma UK has joined forces with a national research team to pilot a pioneering £2.2 million app to catch myeloma early and improve the lives of thousands of patients. 

The first of its kind, the AscelusTMin app will be used to monitor seven long-term blood disorders affecting more than a million people nationwide, including monoclonal gammopathy of undetermined significance (MGUS) and smouldering myeloma, and could save the NHS up to £16 million a year. 

The £2.2million project will see 4,560 patients at four hospitals in London and Sheffield switch to remote consultations and send updates to their existing healthcare team via a 'symptom checker'.  

The data will then be reviewed alongside their blood tests. Any relevant advice, information on medication and appointments as well as blood-test results will be pinged directly to patients’ smartphone or device.  

The digital health platform was grant-funded as part of a joint venture with the National Institute of Health Research, blood cancer charities Myeloma UK, Leukaemia Care, CLL Support and the Sickle Cell Disease Society and a range of other research partners.  

It will be piloted for three years, with quarterly updates. 

Myeloma UK Health Services Research Manager, Dr Sandra Quinn, said: “We’re delighted to be a part of this truly unique project. It is fantastic to see the inclusion of charities like ours in this space as this is key to ensuring patients inform the progress of this work. It takes us even closer to our goals of diagnosing myeloma earlier, influencing positive changes in care and transforming the patient experience. 

“Projects like this one could transform the way we treat the patients of the future. Remote monitoring is challenging but increasingly necessary in this newly emerging and uncertain healthcare landscape.”   

More than 500,000 people in the UK are currently living with MGUS, a benign condition that doesn’t cause any symptoms but needs to be monitored through regular testing and hospital appointments. 

While most people with MGUS will notice no effect on their general health, a small number will go on to develop myeloma.  

Smouldering myeloma, also known as asymptomatic myeloma, is an early form of blood cancer that usually progresses to active myeloma. 

Currently, patients with MGUS and smouldering myeloma are routinely monitored for signs of progression to active myeloma by either their GP or a haematologist. There is no definitive way to predict exactly who will develop active myeloma, therefore patients simply need to watch and wait. 

Myeloma occurs in the bone marrow and currently affects over 24,000 people in the UK.  

Despite being the third most common type of blood cancer, it is especially difficult to detect as symptoms, including back pain, easily broken bones, fatigue and recurring infection, are often linked to general ageing or minor conditions.

While it is incurable, myeloma is treatable in the majority of cases. Treatment is aimed at controlling the disease, relieving the complications and symptoms it causes, and extending and improving patients’ quality of life.

More than half of patients face a wait of over five months to receive the right diagnosis and around a third are diagnosed through an emergency route. By that point, many of them are experiencing severe or life-threatening symptoms.

The digital health platform, which was developed by Itecho Health, will not only offer vulnerable patients a faster, safer and more convenient way to manage their condition but relieve pressure on the NHS, which is already struggling to clear its growing backlog in the wake of the COVID-19 crisis, and free up consultant time to focus on more complex cases. 

Going forward, it is believed the app could save the NHS £16 million each year, even if as few as 25 per cent of MGUS patients used it.  

The app will also allow the research team to gather much-needed data on the benefits of remote monitoring in a post-COVID world. 

Dr Quinn added: “COVID-19 has shifted our focus from one where patients are seen face-to-face in a clinical setting to remote consultations. Whilst this has happened in response to a global pandemic, there is limited evidence to show whether remote monitoring is better for patient outcomes compared to face-to-face appointments. This app provides a unique opportunity to develop that evidence alongside patients.” 

For more information about myeloma or to get in touch with Myeloma UK go to www.myeloma.org.uk. Myeloma UK runs an Infoline on 0800 980 3332. 

WHAT IS MYELOMA? 

• Myeloma is an incurable blood cancer that occurs in the bone marrow and currently affects more than 24,000 people in the UK 
• On average 16 people are diagnosed with myeloma every day in the UK 
• Despite being the third most common type of blood cancer, myeloma is especially difficult to detect as symptoms, chief among them pain, easily broken bones, fatigue and recurring infection, are often linked to general ageing or minor conditions 
• While it is incurable, myeloma is treatable in the majority of cases 
• Treatment aims to control the disease, relieve the complications and symptoms it causes, increase patients’ life expectancy and improve their quality of life. It generally leads to periods of remission, but patients inevitably relapse requiring further treatment 
• Myeloma is the 19th most common type of cancer 
• Myeloma mostly affects people aged 65 and over but it has been diagnosed in people as young as 20 

10 KEY STATISTICS 

• Around 5,800 people are diagnosed with myeloma every year 
• Eight people die from myeloma every day 
• More than 3,000 people die from myeloma every year 
• 74% of people diagnosed with myeloma every year are over 65 
• Half of all myeloma patients will survive their disease for five years or more 
• Around one third of myeloma patients will survive their disease for ten years or more 
• Half of patients face a wait of over five months to receive the right diagnosis and around a third are diagnosed through an emergency route 
• A third of myeloma patients visit their GP at least three times before getting a diagnosis 
• Myeloma is the third most common type of blood cancer 
• Myeloma makes up 2% of all new cancer cases diagnosed ever year 

10 MYELOMA RED-FLAG SYMPTOMS 

• Persistent or unexplained pain for more than 4–6 weeks, particularly in the back or ribs  
• Spontaneous fractures, including osteoporotic vertebral fractures  
• Hypercalcaemia (high calcium levels in the blood)  
• Reduction in kidney function 
• Recurrent or persistent infections  
• Unexplained anaemia  
• Nosebleeds or unexplained bleeding  
• Unexplained breathlessness  
• Feeling generally unwell – fatigue, weight loss, suspicion of underlying cancer  
• Unexplained peripheral neuropathy, that is damage to the nerves that make up the peripheral nervous system. In myeloma the nerves that are most commonly affected are those of the hands and feet 

ABOUT MYELOMA UK 

• Myeloma UK is the only organisation in the UK exclusively dedicated to myeloma and related conditions 
• We receive no core Government funding and rely almost entirely on voluntary donations and fundraising 
• Our ultimate goal is to find a cure and make myeloma history. Until then, our mission is to help every patient live well with myeloma for as long as possible 
• We are committed to diagnosing myeloma earlier, discovering and sharing knowledge, transforming the patient experience and influencing positive change in care 
• We provide a range of crucial information and support services for patients, their family and friends 
• Our free Myeloma Infoline is available on 0800 980 3332, Monday-Friday 9am-5pm (closed weekends and some public holidays)  
• To find out more about myeloma and the work of Myeloma UK, visit www.myeloma.org.uk or follow us on Twitter @MyelomaUK and Facebook, facebook.com/myelomauk/