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The best way to diagnose, treat and monitor myeloma – a type of blood cancer – has been set out in guidance published yesterday by the National Institute for Health and Care Excellence (NICE). The NICE clinical guideline aims to help the NHS provide consistently excellent care for people over the age of 16 in England with myeloma.

Myeloma (also called multiple myeloma) is a relatively rare type of cancer; around 4800 people are diagnosed with the disease each year in the UK making it the 17th most common type of cancer.

Myeloma is a cancer of plasma cells which are found in the body’s bone marrow. These cells normally produce antibodies which help the body to fight illnesses, but myeloma stops these antibodies from working properly. A person with myeloma is more susceptible to infections and finds it harder to recover from them. Other symptoms include pain, bone disease, kidney damage, anaemia and fatigue.

The disease can develop anywhere there is bone marrow, so it can affect many different bones including the spine, pelvis, ribs, and the long bones in the arms and legs.

There is no cure for myeloma, but there are treatments that can reduce the number of myeloma cells in the body, help with the symptoms and improve quality and length of life. Myeloma is a relapsing-remitting cancer characterised by periods when symptoms are present and require treatment followed by periods when the disease is under control.

Professor Mark Baker, clinical practice director for NICE, said: “Although there is no cure for myeloma, several novel drug treatments have been licensed in the past 10 years that have led to substantial improvements in the quality and length of time it is possible to live with the disease. However, there is still variation across the country in terms of providing a coherent and consistent approach to the management of myeloma.

“Myeloma is also a difficult condition to diagnose because many of the symptoms are non-specific. Our guideline sets out best practice care to ensure people live as normal a life as possible for as long as possible.”

The recommendations in the guideline include:

• Communication and support: Offer prompt psychological assessment and support to people with myeloma at diagnosis and, as appropriate, at the beginning and end of each treatment, whenever the disease begins to get worse despite treatment (disease progression) and when people start to require end of life care.
  • Laboratory investigations to provide prognostic information: Use the same sample for all diagnostic and prognostic tests on bone marrow, so people only have to have one bone marrow aspirate and trephine biopsy.
  • Imaging for people with suspected myeloma: Offer imaging to all people with a plasma cell disorder suspected to be myeloma. Doctors should consider whole-body MRI as the first imaging procedure.
  • Service organistion: Each hospital treating people with myeloma should provide regional access through its network to facilities for intensive inpatient chemotherapy or transplantation, renal support, spinal disease management, specialised pain management, therapeutic apheresis, radiotherapy, restorative dentistry and oral surgery, and clinical trials, in particular early phase trials.
    • Managing relapsed myeloma: Offer a second autologous stem cell transplant to people with relapsed myeloma who are suitable and who have completed re-induction therapy without disease progression and had a response duration of more than 24 months after their first transplant. A second autologous stem cell transplant should be also considered in people who have had a response duration of between 12 and 24 months after their first transplant.

Professor Curly Morris, Consultant Haematologist and Chair of the guideline committee, said: “The NICE guideline on myeloma will be of benefit to patients and provide clarity for clinicians in a number of areas where, until now, there has been uncertainty. Key recommendations include clarifying the number and timing of diagnostic tests performed on people with possible myeloma and their radiological assessment.

“While drug treatment options are largely covered by existing NICE guidance, it has been possible to make a strong recommendation in favour of second stem cell transplants for suitable patients and also for the best management of primary Plasma Cell Leukaemia, a very aggressive form of myeloma. Additionally there are important recommendations for the management of people with myeloma who have bone disease, including active interventions, management of people with renal disease, pain management and supportive care especially around thrombosis, infection and neuropathy.”

Monica Morris is a Clinical Nurse Specialist and was a member of the guideline committee. She is now Healthcare Professional Programme Manager at Myeloma UK: “This guideline is an important document for the wide range of healthcare professionals and specialists involved in the care of myeloma patients. The evidence-based recommendations not only provide clarity in aspects of myeloma treatment and management not covered by existing NICE guidance, but also guide best practice in preventing and managing complications and side effects, such as bone disease, pain, fatigue, peripheral neuropathy and infections, all of which can have a huge impact on patients’ quality of life. Importantly the guidelines also recommend the need to provide individualised information and support to patients, families and carers at all stages of the pathway, which is particularly relevant for myeloma patients, whose needs and concerns change throughout the course of their disease.”

Alan Chant, patient and carer member of the guideline committee, said: “This guideline represents an important step forward for myeloma patients. As well as reinforcing existing best practice, it makes recommendations for treatment based on evidence and the experience of leading clinicians. It should ensure that diagnosis and treatment are standardised throughout the country.

“The guideline is available in a version for patients and carers which summarises the care pathway and suggests questions that they may wish to ask their care team at each stage of their diagnosis and treatment. This is a valuable source of information.

“Of particular interest to patients and carers is the information and support that should be available to them at each stage of their diagnosis and treatment, together with details on preventing and dealing with potential side effects of the disease and treatment - such as peripheral neuropathy, infections and fatigue - which can affect their quality of life.

“Importantly this guideline achieves two objectives. It sets out best practice for clinicians for diagnosing and treating myeloma, and provides knowledge to myeloma patients and carers to understand their condition and treatment, ask relevant questions and become better engaged with their care team during the course of their treatment.”

The guideline also complements existing NICE guidance on the drug treatment of myeloma. It sets out which treatments – including stem cell transplants – should be used to manage the condition as well as those to prevent and treat bone disease and acute renal disease, which can be caused by the cancer.

NICE has also published a new guideline to help tackle local variation and improve survival rates for cancers that affect the airways of the head and neck. In the past decade, UK oral cancer incidence rates have increased by a third and the chance of a person dying has risen by around 10%. The new guideline includes recommendations on the best tests to help diagnose these types of cancers earlier, which treatments are most suitable at each stage and what information should be provided to people throughout their treatment.

For more information call the NICE press office on 0300 323 0142 or out of hours on 07775 583 813.

Notes to Editors

About the guidance

• The guideline is available at www.nice.org.uk/guidance/ng35. Embargoed copies of the guideline are available from the NICE press office on request.
• The guideline is aimed at commissioners and healthcare professionals in hospitals and other specialist settings specialist hospitals, as well as people with myeloma and their families and carers,
• Myeloma is a cancer of plasma cells which are found in the body’s bone marrow. These cells normally produce antibodies which help the body to fight illnesses, but myeloma stops these antibodies from working properly. A person with myeloma will be more susceptible to infections and is likely to experience symptoms such as pain, bone disease, kidney damage, anaemia and fatigue.

Myeloma facts and figures

• 4,039 people in England were diagnosed with myeloma during 2011.
• Data for England shows that myeloma is almost twice as common in black people as in white and Asian people.
• According to Cancer Research UK, almost 50% of people with myeloma in England and Wales will survive for at least 5 years after diagnosis and 3 in 10 people will survive for 10 years or more.

For more statistics relating to myeloma, visit the Cancer Research UK website.

About NICE

The National Institute for Health and Care Excellence (NICE) is the independent body responsible for driving improvement and excellence in the health and social care system. We develop guidance, standards and information on high-quality health and social care. We also advise on ways to promote healthy living and prevent ill health.

Our aim is to help practitioners deliver the best possible care and give people the most effective treatments, which are based on the most up-to-date evidence and provide value for money, in order to reduce inequalities and variation.

Our products and resources are produced for the NHS, local authorities, care providers, charities, and anyone who has a responsibility for commissioning or providing healthcare, public health or social care services.

To find out more about what we do, visit our website:www.nice.org.uk and follow us on Twitter: @NICEComms.