Today is European Myeloma Day, a date to raise awareness about the most important issues for European myeloma patients. The findings of a recent report developed by Myeloma Patients Europe (MPE) are the driving reason for early diagnosis to be the focus of European Myeloma Day this year. By raising awareness of myeloma and disseminating an important tool called Myeloma Diagnosis Pathway, the myeloma patient community aims to improve early diagnosis and therefore patients’ lives. Myeloma is a rare and incurable blood cancer and accounts for approximately 1% of all cancers.
Early diagnosis of myeloma has been shown to minimise disease complications and improve quality of life. However, recent MPE research highlighted early diagnosis is still a major barrier that needs to be addressed to improve patient experience and outcomes.
The non-specific symptoms of myeloma (such as bone pain and back pain) were highlighted in the report as a central reason for delayed diagnosis. In particular, they act as a barrier to patients presenting to a general practitioner (GP) in the first place and make it difficult for GPs to diagnosis in a consultation. To help overcome this, MPE developed a Myeloma Diagnosis Pathway outlining the main signs and symptoms of myeloma and the tests and investigations that should be undertaken if myeloma is suspected. The Pathway is now translated into several European languages which are being disseminated by MPE members to GPs in each country.
Kate Morgan, Co-Chief Executive Officer (CEO) at MPE, explained:
“Myeloma is a very difficult cancer to diagnose due to non-specific symptoms and rarity. The MPE Myeloma Diagnosis Pathway outlines the main signs of myeloma and the GP tests and investigations that should be undertaken if myeloma is suspected. By distributing the Pathway among GPs, we hope this will help patients get diagnosed faster.”
Ana Paula Rocha, a myeloma patient from Portugal, stated:
“My diagnosis was tough. My doctors didn’t take my pain into account. I stopped walking and moving on my right side. I went to the hospital as a matter of urgency and the diagnosis finally came. It took seven months.”
View the Myeloma Diagnosis Pathway and the available translations here.
Myeloma Diagnosis Across Europe
To find out the main reasons of the delay in myeloma diagnosis, MPE ran a survey, and several focus groups and interviews, in which more than 600 myeloma patients and 80 haematologists across Europe participated. According to findings, myeloma diagnosis can take over five months, require more than four medical consultations and involve visits to at least three different medical specialists.
You can access the full research report here: Myeloma Diagnosis Across Europe – The Diagnosis Experiences of European Myeloma Patients and Perspectives from European Haematologists
Lise-Lott Eriksson, president of MPE, said:
“Early diagnosis is still a challenge in myeloma. MPE’s research showed that 22% of patients had more than six medical consultations before getting a diagnosis. This can have long term impacts on quality of life. MPE is working with our members to raise awareness, educate clinicians and help reduce delays.”
Vince Claus, a myeloma patient from Belgium, explained:
“When I was diagnosed, I was preparing myself to run a marathon. I went through some tests to confirm everything was ok and instead of that, I was diagnosed with myeloma. I had no symptoms at that time and I was diagnosed within two months. I think it is quite important to be diagnosed so early in the process to ensure quality of life. Now, it has been four years since the diagnosis and I’m still living perfectly.”
The research specifically found that whilst 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 more than five 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).
Co-Chief Executive Officer (CEO) at MPE, Katie Joyner, commented:
“Our study showed that approximately 24% of patients waited five months or more to get a myeloma diagnosis. We can do better. Our aim this European Myeloma Day is to raise awareness of the diagnosis challenges and work on solutions, like translating and disseminating the Myeloma Diagnosis Pathway.”
European Myeloma Day
During Blood Cancer Awareness Month, which takes place every September, MPE holds European Myeloma Day on 27 September to raise awareness about the most important issues for European myeloma patients, as well as generate data and discuss solutions.
This year’s campaign focuses on early diagnosis as one of the most important challenges to address in Europe. European Myeloma Day also gives a voice to patients and a platform to share their diagnosis experience, highlighting the importance of a timely diagnosis and the consequences and the impact of delays in detecting myeloma on time.
Myeloma is a rare and incurable cancer of the bone marrow and accounts for approximately 1% of cancers. Approximately 50,000 people in Europe are diagnosed each year with myeloma. Myeloma is a relapsing-remitting cancer: patients will start treatment and may enter a period of remission before reappearance of symptoms. During remission phases, patients will either continue on the treatment that is keeping their myeloma at bay, they may receive a single drug maintenance treatment or undergo observation. Relapses can occur several times during the course of myeloma, when it is again necessary to start or change treatment. The treatment landscape of myeloma is very complex and can include a stem cell transplant and combinations of three to four drugs at a time, such as chemotherapy, immunotherapy, and steroids. Survival rates of myeloma patients have significantly improved over the last decade with the development of new and emerging treatments.