Presenting our unmet and emerging needs research at ASH 2023

As Myeloma UK gears up to unveil game-changing research at the prestigious ASH conference, lead researcher Dr Sandra Quinn unpacks why this work could pave the way for earlier diagnosis and how none of it would have been possible without the unflagging support of patients and their families.  

This week I had the honour of presenting our research at the American Society of Haematology’s annual meeting. This is a global gathering of haematology experts and I was delighted to be a part of it.   

By presenting this research to international experts at ASH we have a huge opportunity to drive change and help more patients get diagnosed earlier, not only in the UK but across the world. 

World-class research into myeloma diagnosis 

It is well known that myeloma is difficult to diagnose and has one of the longest times to diagnosis of any cancer in the UK. Part of the challenge is that patients often present with a wide range of non-specific symptoms that look like many other conditions. However, not all patients experience delays, leading to the question, why are some people diagnosed late?  

Our research aimed to unravel this problem and investigate whether the symptoms patients experience leading up to their diagnosis are truly non-specific or whether there are patterns to be found. And, where these patterns exist, whether we might be able to explain why some patients receive a delayed diagnosis while others do not. 

We based this research on two surveys, which had 636 and 514 respondents respectively. These surveys sought to identify whether patients had a delayed or timely diagnosis, to measure the symptoms they experienced in the lead-up to their diagnosis and the order in which those symptoms arose.  

We also wanted to know more about the impact of myeloma on patients’ quality of life. Our key questions were: do the symptoms in the lead-up to a diagnosis present differently in myeloma patients with a timely or delayed diagnosis? Does a delayed diagnosis lead to poorer quality of life in the long term? 

Pinpointing key symptoms of myeloma 

On average, patients with a timely diagnosis experienced three symptoms in the lead-up to their diagnosis, while patients with a delayed diagnosis experienced five symptoms.  

Our research also showed those patients with a delayed diagnosis presented with a slightly poorer quality of life than those with a timely diagnosis.  

The first five symptoms experienced by people with a timely diagnosis tended to be pain and fatigue followed by spinal fractures, recurrent infections and a general decline in health. 

While the first two symptoms experienced by people with a delayed diagnosed were the same, that is pain and fatigue, the subsequent three – a general decline in health, depression and shortness of breath – were far more vague.  

This suggests to us that people with a timely diagnosis fit the profile of a ‘typical’ myeloma patient while those with a delayed diagnosis don’t, so their vague symptoms don’t get picked up. 

The next stage of this research 

This research could be a game-changer for patients and help us to understand why delays in diagnosis take place in myeloma. 

Delving into the data with our small team of three has been a real journey for us and incredibly revealing. Dr Lauren Kelly, Dr Tom Lewis and I have a strong sense of the magnitude of the challenge patients face and we are determined to harness our collective research skills to improve their lives. 

The next stage is to unpack why myeloma patients’ symptoms unfold in the way they do and to uncover what the underlying issues might be, which will help our research move forward and bring us closer to a time when myeloma can be diagnosed earlier.  

We don’t have all the answers yet, but we are really excited about the findings so far. This research gives us a framework to draw upon and we will use the patterns we have identified to solve the next part of the puzzle. 

Thank you to our supporters 

None of this work would have been possible without the support of our amazing patients and their families. My team and I are eternally grateful to them for taking the time, while they may have been unwell or on treatment, to fill out our questionnaires. Patients and their families are such a huge inspiration to us and each one of them has taken us a step closer to improving diagnosis and the lives of people with myeloma. 

It’s patients and their families and all their efforts to support us that enable us to invest in our research programmes, commit to a much larger scale project like this one and tackle key issues and questions. 

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