Brussels, 27 September 2022 – For some European myeloma patients, their diagnosis can take over 5 months, require more than 4 medical consultations and involve visits to at least 3 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 (haematologist) experiences of 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. The results were presented today during the first-ever European Myeloma Day in an online event. You can access the full report on the research findings here: Myeloma Diagnosis Across Europe – The Diagnosis Experiences of European Myeloma Patients and Perspectives from European Haematologists.
Kate Morgan, Head of Policy and Access at MPE, commented:
“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. Whilst general practitioners do an amazing job, the rarity of myeloma and the non-specificity of symptoms (such as back pain and fatigue) 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.”
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 5 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). Whilst not the predominant place of diagnosis, 11% of patients responded that they were diagnosed in an emergency setting.
Séverine Wollenschneider, myeloma patient, explained:
“It took me seven months to get a myeloma diagnosis. I had deep fatigue and severe back pain which means I couldn’t walk or move properly. I finally got diagnosed after 15 medical appointments with several doctors”.
Most patients completing the survey saw up to 3 different medical specialists before receiving a diagnosis and 21% of patients saw more than 3. In addition, 45% of patients had more than 3 medical consultations and 22% had more than 6.
Haematologists broadly aligned with patients stating that from their experience 14% of patients saw more than 3 specialists. 38% of haematologists also reported that patients would have around 3 medical consultations and 31% stated they would have 4 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 general practitioner (GP) in the first place and make it difficult for GPs to diagnosis in a consultation.
The results also showed that myeloma patients are often slow in seeking help from GPs in primary care. Whilst many patients sought help within 3 months, 51% of patients waited 3 months or more before seeking medical help. 14% of respondents waited longer than one year. The most common reason raised by patients was the non-specific symptoms associated with myeloma, such as back pain and fatigue, which are correlated to symptoms of general ageing and routine activities. This prevented them from linking these symptoms to a more severe illness.
The main barriers to early diagnosis highlighted by haematologists in the survey were the lack of specificity of symptoms (69%), their overlap with more common signs of frailty/ageing (57%) and lack of GP awareness of myeloma (65%). These were corroborated by both haematologists and patients in the focus groups and interviews.
Charlotte Pawlyn, Haematology Consultant, Royal Marsden Hospital, London, and member of the MPE Medical Advisory Committee explained:
“One of the main barriers to diagnosing myeloma is that patients can have non-specific symptoms. The main symptoms, such as back pain or fatigue, are common and myeloma is a rare disease. Most GPs will only see a few cases of myeloma in their career, making it very difficult for them to suspect it.”
Based on the survey results and focus group discussions, MPE developed several recommendations to help improve diagnosis, which are summarised below:
- Awareness initiatives and decision-making aides for primary care to ensure doctors suspect myeloma and conduct the relevant tests and investigations, as appropriate. MPE has 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
- European and national referral guidelines for myeloma should be developed (where they don’t already exist) and disseminated.
- Exploration and development of predictive risk algorithms to help estimate the risk of a patient having myeloma.
- Development of an online learning programme for GPs on myeloma and related conditions like AL amyloidosis, with continuous professional development points.
- Government funded public health campaigns which promote GP attendance if health changes and general symptom awareness of the signs of cancer.
- Expansion of a diagnosis pathway campaign to other healthcare specialists.
- Hospital specific, cross-speciality training to remind clinicians about the signs, symptoms and complications of different diseases.
- Haematologists to consider providing feedback during “teachable moments” where patients have experienced significant diagnosis delays that could have been avoided.
- Explore targeted screening approaches so patients are identified before becoming seriously unwell.
- Exploratory studies on the viability of screening tests or how the community better monitors MGUS and identifies high-risk patients before it progresses to myeloma.
- Monitor variations in diagnosis times and access to tests by national registries and health systems, and through initiatives in Europe’s Beating Cancer Plan.
- Integration of comprehensive strategies to improve the diagnosis of myeloma, and other rare and difficult to diagnose cancers, in European and national cancer plans.
First-ever European Myeloma Day
To raise awareness of the most important issues for European myeloma patients, as well as generate data and discuss solutions, today MPE is launching the first-ever European Myeloma Day as part of the Blood Cancer Awareness Month. It will take place every year on 27th September.
European Myeloma Day 2022 will mark the end of the MPE Year of Action on Diagnosis which explored the barriers to early diagnosis, gathered real-world evidence, and developed strategies to improve diagnosis and improve lives.
During a webinar involving patients, caregivers, pharmaceutical industry representatives, haematologists and other important stakeholders, MPE will present the findings of the Early Diagnosis research and launch a Europe wide GP awareness campaign on myeloma.
Chief Operating Officer (COO) at MPE, Katie Joyner, commented:
“There are many moments in the year when different organisations raise awareness about myeloma, but MPE decided to launch European Myeloma Day to provide a platform for the patient community to address challenges at a European level, such as diagnosis. MPE represents 48 member organisations based in 31 countries, and even though each country has their own barriers, we all have a common goal: improving the quality of life of myeloma patients”.
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. Patients who are eligible may also receive a stem cell transplant. Survival rates of myeloma patients have significantly improved over the last decade with the development of new and emerging treatments.
About Myeloma Patients Europe (MPE)
Myeloma Patients Europe (MPE) is an umbrella organisation of myeloma and AL amyloidosis patient groups across Europe. MPE currently has 48 members based in 31 countries. The mission of the organisation is to provide education, information, and support to member groups and to advocate at European, national, and local levels for the best possible research and equal access to treatment and care. To achieve its aims, MPE works directly with members, healthcare professionals, reimbursement authorities, regulators, politicians, pharmaceutical companies, and the media to ensure all stakeholders collaborate to improve patient outcomes and reduce inequalities across Europe.