New tool to tackle gaps in public’s knowledge of blood cancer symptoms

Around 32,200 people are diagnosed with a type of blood cancer – leukaemia, lymphoma, or myeloma – each year in the UK.* 

However, many people are diagnosed at a late stage, and emergency presentation is a common route to diagnosis. Researchers suggest this may be due in part to a lack of awareness of symptoms associated with blood cancers, which are often vague and non-specific. For instance, some people feel like they have the flu and experience symptoms like weakness, fatigue, a high temperature or unexplained weight loss.  

These signs and symptoms are usually caused by something less serious than cancer – but if it is cancer, spotting it early can make a real difference. 

Now, hoping to diagnose more of these cancers at an early stage, researchers from the University of Surrey and Queen Mary University of London have developed the Blood Cancer Awareness Measure (Blood CAM) tool. 

Blood Cancer UK, which funded the tool’s development, says it is a “significant step” towards identifying and increasing the public’s knowledge of blood cancers.  

The power to save lives

The Blood CAM – which works as an online questionnaire – has been designed to quantify public knowledge of symptoms which can indicate leukaemia, lymphoma, and myeloma. 

Rincy George, Policy Officer at Blood Cancer UK, said: “This new tool is a significant step towards understanding the gaps in public awareness of blood cancer symptoms. 

“By identifying these knowledge gaps, it can help shape impactful awareness campaigns that have the potential to save lives.” 

She warns, “timely diagnosis is crucial for those facing a blood cancer diagnosis.” 

A lack of knowledge

When researchers put the tool to use, they found that around 69% of people were not aware that night sweats can be a symptom of blood cancers. Similarly, 56% of people did not recognise rashes/itchy skin as a possible indicator of these diseases.   

Unexplained weight loss (69%) and unexplained bleeding (65%) were the most recognised possible symptoms of blood cancers.   

Men had lower knowledge of some potential symptoms of blood cancers than women, who were more than twice as likely to recognise bruising as a possible sign of the diseases.   

As part of continued work into blood cancers, the research team also investigated the role of patient enablement for those experiencing potential blood cancer symptoms.  

Patient enablement is defined as a patient’s ability to understand and cope with illness and life after a consultation with a doctor.   

When surveying 434 people, researchers found that 52% had experienced at least one potential symptom of a blood cancer.  

Following a series of questions to determine levels of patient enablement, researchers were surprised to find that those who scored highly on patient enablement were less likely to seek medical help for potential symptoms of blood cancers.  

However, enablement was important when it came to people returning to their doctor for another appointment (e.g. when symptoms didn’t go away), which is vital when experiencing potential symptoms of blood cancers. Although in most cases these symptoms won’t be a sign of cancer, people know their own bodies, and what’s normal for them, best. So if people experience something that’s unusual, hard to explain or that won’t go away, it’s important that they talk to their doctor again.     

Professor Katriina Whitaker, Lead for Cancer Care at the University of Surrey, said: “Tools such as these are vital to help improve earlier diagnosis of cancer. Assessing public awareness of cancer symptoms helps us identify knowledge gaps within the population and recommend remedies [for these gaps].” 

“Spotting cancer at an early stage saves lives.”

This article was updated on 08/08/2023 to reflect Cancer Research UK’s information on the different types of blood cancer.

*Based on the average annual number of new cases of Hodgkin Lymphoma, Non-Hodgkin Lymphoma, Leukaemia and Myeloma (ICD10 C81-C86, C90-95) in the UK between 2017-2019.