Research Spotlight

Time-to-diagnosis and symptoms of myeloma, lymphomas and leukaemias

April 2014

Dr Debra Howell

Research Fellow
Epidemiology & Cancer Statistics Group, University of York

Related publications

Time-to-diagnosis and symptoms of myeloma, lymphomas and leukaemias: a report from the Haematological Malignancy Research Network

Debra A. Howell, Alexandra G. Smith, Andrew Jack, Russell Patmore, Una Macleod, Emma Mironska, Eve Roman

BMC Hematology 2013, 13:9

Compared to other cancers, the pathway to diagnosis of haematological malignancies can be difficult and prolonged. Although experiences are variable, research in the UK has already identified that some patients may have to visit their GP a number of times before they are referred to hospital and then they are not always referred directly to a haematologist, despite Referral Guidelines being available to facilitate this process. Many people, particularly those with myeloma, are only diagnosed after emergency presentation at hospital. These views have been confirmed during discussions with HMRN patients as part of our Partnership activities.

As a result, we carried out a study to examine the symptoms of haematological malignancies and the time taken to diagnose these diseases. Between 2004 and 2011, over three thousand HMRN patients returned a survey to us about these issues. We used this information to calculate the duration of time between onset of symptoms, help-seeking and diagnosis; compare symptoms reported to those in the Referral Guidelines; and look for patterns by disease sub-type.

We found that around a third of patients did not have any symptoms at all, and these people were usually diagnosed from a routine blood test. Generally, more aggressive diseases (such as acute myeloid leukaemia) were diagnosed soonest, at around 6 weeks; diffuse large B cell lymphoma took around 9 weeks and myeloma 6 months. Many symptoms corresponded to the Referral Guidelines but others were rarely reported; and conversely some symptoms were absent but frequently reported by patients, as shown in the image below (blue bars are those symptoms listed in the UK referral guidelines, red lines are those which are not).

Symptoms frequency chart

Some symptoms were common across diagnostic groups (tiredness and pain) whereas others were specific to particular subtypes:

Common symptoms by diagnostic group chart

Overall, our findings show that time-to-diagnosis can be unacceptably prolonged. Existing Referral Guidelines could be refined, incorporating differences between individual diseases. A public education campaign would be useful to highlight the symptoms of these diseases. We are currently exploring routes to diagnosis in greater detail, and this includes examining pathway data in medical records, as well as speaking to patients about factors influencing them when they seek medical help for symptoms.

Percent reporting symptoms by diagnosis
Top five symptoms by diagnosis

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