A study looking at why it takes longer for some people to be diagnosed with myeloma or lymphoma

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Cancer type:

Blood cancers
Lymphoma
Myeloma
Non-Hodgkin lymphoma

Status:

Results

Phase:

Other

This study was done to find out more about how and when people are diagnosed with myeloma or lymphoma. It was supported by Cancer Research UK as part of the National Awareness and Early Detection Initiative (NAEDI).

More about this trial

Researchers know that the time it takes to find out if someone has cancer can vary a lot. They wanted to know why this is. They also know that people have different experiences before they are diagnosed, and see a variety of health care professionals. They wanted to find out more about this.
 
In this study they looked at medical records and talked to people who had been told they have myeloma or lymphoma.
 
The aims of this study were to:
  • find out why it takes longer to diagnose myeloma or lymphoma in some people than others
  • find ways to speed up the time it takes to diagnose myeloma or lymphoma
  • find out more about which health care professionals people see before they are diagnosed

Summary of results

Results from different parts of this study are shown separately below.
 
Referral routes to diagnosis
The research team looked at which health care professionals people saw, and when they saw them, in the time before they were diagnosed. This is called the referral route.
 
They looked at the medical records of 441 people diagnosed with myeloma in 2012 or 2013.  They looked at things including whether:
  • people were sent to hospital by their GP because of their symptoms
  • the referral was urgent or routine
  • they went to Accident and Emergency (A&E) or not
  • the referral route affected how well people did after diagnosis
The team could find this information for 381 people. They found that 124 went to A&E or were admitted directly to a hospital ward as an emergency. Of these:
  • 79 people were sent by their GP
  • 34 decided to go themselves because of their symptoms
  • 11 were sent by another hospital department (x-ray for example)
They also found that:
  • 84 were sent to a hospital specialist urgently by their GP
  • 76 were sent using the 2 week referral guidelines because their GP suspected they may have cancer
  • 56 were referred by their GP for a routine, non-urgent appointment
  • 41 were sent by one hospital specialist doctor to another specialist 
There are 4 factors that doctors look at when they diagnose myeloma, to see how advanced it is. These are called CRAB and are:
  • an increase in blood calcium level (Calcium)
  • poor kidney function (Renal)
  • low red blood cell count (Anaemia)
  • whether myeloma has affected the bones (Bones)
The research team found that more people diagnosed after an emergency hospital visit or admission had 2 or more of these factors. But people who had different referral routes had fewer. This shows that myeloma tends to be more advanced in people who are diagnosed after an emergency hospital visit or admission.
 
This also affected how many people were living a year after being diagnosed with myeloma. The research team found that it was:
  • nearly 9 out of 10 (89%) people not diagnosed after an emergency hospital visit or admission
  • more than 7 out of 10 people (73%) who were diagnosed after an emergency hospital visit or admission
Experiences of people with myeloma in the time before diagnosis
This study recruited 20 people who had been diagnosed with myeloma, and 12 of them invited a relative to join the study with them. A member of the research team interviewed everyone taking part. They asked about things such as:
  • what symptoms they noticed, and what they decided to do about them
  • who they went to see and why
  • what they thought about how long it took to get their diagnosis
  • what was good and what could be improved
Diagnosing myeloma can be tricky because the symptoms are varied and often vague. Doctors often think the symptoms are caused by something else, especially if the patient has other medical problems.
 
The people taking part:
  • had between 1 and 10 appointments with a doctor before they were diagnosed
  • made an appointment with their GP between 1 and 7 months after first noticing something wasn’t right
  • waited between 2 weeks and 17 months from their first appointment to getting a diagnosis
  • were often encouraged to go to see the GP by a family member
The symptoms they had were varied and often quite general. They included bone pain, tiredness and shortness of breath. The GPs often didn’t recognise these as symptoms of myeloma. They diagnosed conditions such as sciatica (leg and back pain), depression or an infection. 12 out of the 20 people taking part thought it took longer than it should to be diagnosed with myeloma.
 
Some people weren’t sure when to go back to the doctor. Some were told to come back. But some had been reassured by the doctor and didn’t think they needed to see them again.
 
People thought that GPs and other health care professionals didn’t know enough about myeloma. But there are so many possible symptoms that raising awareness of symptoms may not be that helpful.
 
The research team feel that perhaps it would be better for doctors to:
  • look at all the symptoms and consider all possible causes
  • review symptoms if they don’t get better
  • recognise a change in how often people ask to see the doctor
  • recognise a change in symptoms
  • recognise if symptoms are not getting better or going away
And for patients to:
  • make sure they know what is normal for them
  • make an appointment to see a doctor if they notice a change
  • go back and see the doctor again if things don’t improve
The research team concluded that myeloma can be difficult to diagnose because there are so many possible symptoms. They suggest people and their doctors make sure they know what’s normal for them, and investigate any changes. This may be more useful than trying to raise awareness of all the possible symptoms.
 
Experiences of people with lymphoma in the time before diagnosis
The research team are currently analysing the results from the lymphoma study. We will update this page once the results are available.
 
We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists (peer reviewed Open a glossary item) and published in a medical journal. The figures we quote above were provided by the team who did the research. We have not analysed the data ourselves.

Recruitment start:

Recruitment end:

How to join a clinical trial

Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.

Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Chief Investigator

Dr Debra Howell

Supported by

Bloodwise
National Awareness and Early Diagnosis Initiative (NAEDI)
NIHR Clinical Research Network: Cancer
University of York
Yorkshire and Humberside Haematology Network

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Freephone 0808 800 4040

Last review date

CRUK internal database number:

9579

Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Cara took part in a clinical trial

A picture of Cara

"I am glad that taking part in a trial might help others on their own cancer journey.”

Last reviewed:

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