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Research reveals chaotic schedule for myeloma patients

Myeloma diagnosis can take over five months, requiring several medical consultations.

For some European myeloma patients, their diagnosis can take over five months, require four medical consultations and involve visits to at least three different medical specialists.

These are some of the findings of pan-European research conducted by Myeloma Patients Europe (MPE) with the aim of exploring patient and doctor experiences of a myeloma diagnosis. MPE ran a survey, several focus groups and interviews, in which more than 600 myeloma patients and 80 haematologists across Europe participated.

The research specifically found that while many patients often have a good diagnosis experience, 34% told MPE that their diagnosis was delayed. Exploring these delays further, patients and haematologists reported that diagnosis can sometimes take several months and patients often have confusing pathways to diagnosis involving frequent medical consultations and seeing a variety of medical specialists – such as renal or orthopaedic specialities.

Although not the predominant place of diagnosis, 11% of patients also responded that they were diagnosed in an emergency setting.

Most patients completing the survey saw up to three different medical specialists before receiving a diagnosis and 21% of patients saw more than three. In addition, 45% of patients had more than three medical consultations and, most notably, 22% had more than six.

Haematologists broadly aligned with patients stated that, from their experience, 14% of patients saw more than three specialists. Furthermore, 38% of haematologists also reported that patients would have around three medical consultations and 31% stated they would have four or more.

As well as convoluted diagnosis pathways, the non-specific symptoms of myeloma – such as bone pain and back pain – were highlighted as a central reason for delayed diagnosis. In particular, they act as a barrier to patients presenting to a GP in the first place and make it difficult for GPs to diagnose in a consultation.

Kate Morgan, head of policy and access at MPE, explained: “MPE routinely hears from myeloma patients that have been misdiagnosed with more common conditions, before finally being referred to a haematology department and having a diagnosis confirmed. Early diagnosis of myeloma is very important as long delays can have a negative impact on quality of life.”

“While general practitioners do an amazing job, the rarity of myeloma and the non-specificity of symptoms mean it is a very difficult cancer to diagnose. During this first-ever European Myeloma Day, MPE will raise awareness about diagnosis experiences and discuss potential solutions to improve patient outcomes,” she added.