Blood cancers: improving outcomes and efficiency

Transcription

1 Blood cancers: improving outcomes and efficiency An analysis of the personal, social and economic costs of blood cancers in England and recommendations for how outcomes can be improved

2 Blood cancers: improving outcomes and efficiency An analysis of the personal, social and economic costs of blood cancers in England and recommendations for how outcomes can be improved Blood Cancers Alliance 2011 This report was supported by a grant from Napp Pharmaceutical Holdings Limited and produced with the help of MHP Communications Limited. Editorial control rests exclusively with the Blood Cancers Alliance Blood cancers: improving outcomes and efficiency l 3

3 Leukaemia & Lymphoma Research is the only UK charity solely dedicated to research into blood cancers, including leukaemia, lymphoma and myeloma. Registered Charity No (England, Wales) SC (Scotland) Leukaemia CARE is committed to providing care and support to everybody whose lives have been affected by blood cancers simply supporting a quality of life for all. Registered Charity No (England, Wales) SC (Scotland) The Lymphoma Association provides emotional support and information to anyone affected by lymphatic cancer. Registered Charity No Myeloma UK informs and supports people affected by myeloma, and helps improve treatment and standards of care through research, education, campaigning and raising awareness. Registered Charity No. SC l Blood cancers: improving outcomes and efficiency

4 Contents Table of figures 6 Foreword 7 Key findings and recommendations 8 Chapter 1 Introduction 10 Chapter 2 About blood cancers 12 Chapter 3 The cost of blood cancers to the health services 20 Chapter 4 The cost of blood cancers to patients and their families 28 Chapter 5 The cost of blood cancers to the economy 30 Chapter 6 Saving costs in blood cancer 34 Chapter 7 Improving outcomes in blood cancer 39 Annex 1 World Health Organisation s Classification of Tumours of Haematopoietic and Lymphoid Tissues (2008) 44 Annex 2 Data sources 49 Annex 3 Methodology and calculations 50 Annex 4 Bibliography 56 References 58 Blood cancers: improving outcomes and efficiency l 5

5 Table of figures Figure 1 Summary of the estimated cost of blood cancers in 2007 Figure 2 Incidence of blood cancers in England Figure 3 Relative age standardised 5 year survival rates 15 Figure 4 Death registrations from blood cancers in England between Figure 5 Spend per capita on blood cancers in England by PCT, 2008/09 (unified weighted population) Figure 6 Distribution of PCT spend per capita on blood cancers 2008/09 (unified weighted population) Figure 7 Elective bed days for lymphoma per 100,000 population by PCT, 2008/09 (unified weighted population) Figure 8 Emergency bed days for lymphoma per 100,000 population by PCT, 2008/09 (unified weighted population) Figure 9 Emergency admissions for lymphoma per 100,000 population by PCT, 2008/09 (unified weighted population) Figure 10 Figure 11 Figure 12 Figure 13 Figure 14 Figure 15 Figure 16 Figure 17 Lost productivity from patients who died from or survived a diagnosis of blood cancer in 2007 who would otherwise undertake paid work Lost productivity from patients who died from or survived a diagnosis of blood cancer in 2007 who would otherwise undertake unpaid work Total costs to the economy due to the main types of blood cancer in 2007, based on 5 year survival Total projected costs to the economy due to blood cancers in 2015, based on 5 year survival Percentage of deaths that were avoidable among patients diagnosed in Great Britain during based on mean and highest European survival rates Deaths in England from blood cancer in 2007 and 2015 at current English and best European survival rates Lost productivity due to blood cancers in England at current English and best European survival rates The impact of late presentation on blood cancer outcomes Figure 18 Projected number of commissioning organisations, new diagnoses of blood cancers and expenditure on blood cancers for different population sizes in 2009/ l Blood cancers: improving outcomes and efficiency

6 Foreword by Rt Hon Sir Menzies Campbell MP When I was diagnosed with non Hodgkin lymphoma in 2002 I received excellent treatment and care. This country has world class haematologists, nurses and other healthcare professionals, treatments are becoming ever more sophisticated and effective, and for many blood cancers long term survival is better than ever before. What I did not realise is just how common they are. After breast, bowel, lung and prostate cancer, blood cancers are the fifth most frequently diagnosed cancer in the UK. However, blood cancers encompass a wide range of types, from the common to extremely rare, acute to long term, and the curable to incurable. They can affect anyone in our society from the very young to the elderly. They are also often challenging and complex to manage, requiring specialist treatment and expertise and individualised strategies tailored to each patient. Receiving a diagnosis of a blood cancer can be a terrifying experience and the emotional consequences for patients and their families cannot be overstated. Similarly the financial costs to those affected, and to the national economy, can be significant, especially where people are unable to return to work due to ill health, rigorous treatment regimens or caring for members of their family. Despite this country s leadership in the treatment of blood cancers, outcomes are still disappointing. There are many examples of success we can build on. However it is crucial not to lose sight of the fact that so much more should and could be done and that every poor outcome is not only a personal tragedy for those involved but also contributes towards inefficiency and lost productivity for the economy. The Coalition Government s proposed reforms to the NHS and the Department of Health s recently updated cancer strategy (published in early 2011) offer the ideal opportunity to address this. We can and must ensure that blood cancer treatments are appropriately commissioned, that healthcare professionals are supported in meeting the challenges of blood cancer diagnosis and treatment and, most importantly, that blood cancer patients and their families and carers receive the emotional and practical support to help cope with living with their diagnosis. This report by the Blood Cancers Alliance (Leukaemia CARE, Leukaemia and Lymphoma Research, Lymphoma Association and Myeloma UK) provides the platform to review areas of progress and understand the importance of getting it right for blood cancer patients. It clearly shows not only the personal and social costs of blood cancers in England, but the economic impact of blood cancers to our economy and the estimated 48.5 million a year that could be saved by 2015 through simple outcome improving measures. I recommend this report to my fellow members and encourage the Department of Health to implement its recommendations for improving blood cancer outcomes across England. Blood cancers: improving outcomes and efficiency l 7

7 Key findings and recommendations Over 110,000 people are living with a blood cancer today in England, and one person is diagnosed every 30 minutes A complex and heterogeneous group, blood cancers encompass 140 individual types of cancer, ranging from the relatively common to the extremely rare. They can be acute or long term conditions, curable or incurable and affect young and old alike Advances in treatment and care have led to improvements in survival rates for most blood cancers, although outcomes in England are still markedly poorer than in many other comparable countries Blood cancers have a significant financial impact on patients and families, health services and the wider economy. However, the greatest financial costs are due to lost productivity as a result of blood cancer patients leaving the workforce Figure 1. Summary of the estimated cost of blood cancers in Healthcare costs Costs to patients Lost productivity from paid work Lost productivity from unpaid work Total million 6.6 million million million 1,730.2 million There are significant opportunities to reduce the personal and economic impact of blood cancers, including: Ensuring the optimum and efficient treatment, management and care of blood cancer patients and addressing inequalities and variation across the country Enhancing the support available to patients who wish to return to work, so increasing their ability to contribute to the economy Improving blood cancer outcomes, increasing survival and reducing mortality, thereby reducing the losses to society incurred through lost wages Achieving European levels of outcomes by 2015 could result in: 1,070 lives a year saved by 2015, assuming a steady rate of improvement in outcomes 48.5 million savings to the English economy a year by 2015, again assuming a steady rate of improvement in outcomes In order to close the gap with Europe, further action will be required to improve blood cancer services across the patient pathway, encompassing earlier diagnosis, the specialist delivery of care, access to the most appropriate treatments and improving care for people living with and beyond blood cancer. These improvements will need to be underpinned by stronger commissioning, informed by expertise from across the blood cancer pathway There are a range of practical and affordable steps which can be taken to achieve these improvements, but they require concerted action 8 l Blood cancers: improving outcomes and efficiency

8 Recommendations 1. The Department of Health should work with commissioners to improve the recording of expenditure data on blood cancers. Commissioners which are significant outliers in terms of expenditure on blood cancers should assess whether their level of expenditure is appropriate 2. Commissioners should critically appraise the range in elective bed day occupation by blood cancer patients between health economies and work with providers to identify opportunities to reduce unnecessary bed use where appropriate 3. Providers should take steps to reduce emergency admissions for patients receiving treatment for a blood cancer, investigating other ways of managing side effects which are more cost effective and better for a patient s wellbeing 4. NHS providers should take steps to ensure that blood cancer patients are aware of the financial support that may be available to them and supported in applying for it as necessary 5. The Department of Health and the Department for Work and Pensions should work with employers to introduce greater support for blood cancer patients of working age, who may wish to return to the workforce 6. The Department of Health should set clear outcome goals explaining when it expects blood cancer outcomes to reach levels which are comparable with the international best 7. GPs should be supported in identifying the potential signs and symptoms of blood cancers through the development of risk based decision support tools. The Department of Health should consider incentivising earlier diagnosis through appropriate channels 8. Every blood cancer patient should have access to a clinical nurse specialist 9. Haemato oncology multidisciplinary teams should be included within the next round of the National Cancer Peer Review Programme 10.Commissioners and providers should plan the appropriate capacity that will be required to deliver blood cancer treatment. This will include investing in appropriate chemotherapy and radiotherapy facilities, and facilities to conduct bone marrow and stem cell transplants and diagnostics 11.Blood cancer services will need to be commissioned at a high population level, due to their relative rarity, as well as the high unit costs and the complexity of treatment Blood cancers: improving outcomes and efficiency l 9

9 Chapter 1: Introduction Nearly 20,000 people are diagnosed with blood cancer in England every year. That is more than one person every 30 minutes 2. In many ways, blood cancers encapsulate the key challenges facing modern health services. Incidence and prevalence are rising; advances in treatment are transforming the prospects of many patients, but come at a high cost; and there is still too much we do not know about how to prevent, diagnose and treat blood cancers. Blood cancers can be an acute or chronic disease, can be relatively common or extremely rare and can affect men and women and young and old people alike. Therefore the personal, social and economic impacts of blood cancers can be far reaching. Members of the Blood Cancers Alliance, a coalition of Myeloma UK, Lymphoma Association, Leukaemia CARE and Leukaemia and Lymphoma Research, regularly witness the full scale of the personal and health impact of blood cancers. Many patients turn to us for advice and support at what can be an extremely traumatic time for them and their family. It is also possible to quantify the financial impact of blood cancer. Although attempts have been made to assess the cost of blood cancers to the NHS 3 and the overall cost of cancers to the economy in England 4, no attempt has yet been made to quantify the overall financial impact of blood cancers to society in England. Meeting the health challenges of tomorrow requires delivering high quality and efficient services today. Patients and other taxpayers want to be assured that the services they receive make the best use of available resources. With public expenditure facing significant reductions in the short to medium term, and the economy remaining fragile, it has never been more important to assess the potential impacts of public policy and expenditure decisions. However, without an accurate analysis of the costs of a disease, it is impossible to make an informed assessment about the potential benefits of a policy. The Blood Cancers Alliance therefore decided to model the costs associated with blood cancers, as well as the potential benefits from improving outcomes. MHP Health Mandate, a specialist health policy consultancy, was commissioned to undertake the analysis. This report: Sets out our estimate of the costs associated with blood cancers, in terms of health service expenditure, financial impact on patients and their families and overall cost to the economy Examines the dynamics which will have an impact on the future costs of blood cancer Looks at the potential economic benefits of improving outcomes from blood cancers, as well as the consequences of failing to do so Assesses the extent to which savings could be realised, without compromising on the quality of care Analyses the potential impact of the Government s NHS reforms to commissioning structures on blood cancer treatment and care and makes recommendations about how the opportunities can be maximised and the potential risks mitigated A wide range of information exists on different aspects of blood cancers. However, to date this has not been brought together to create a comprehensive picture of the impact that blood cancers have on patients, the NHS and wider society. This report attempts to address this information deficit. 10 l Blood cancers: improving outcomes and efficiency

10 In developing this report we have: Collated publically available data on different aspects of blood cancer, including incidence, survival, prevalence and mortality, as well as NHS cost estimates. A full list of the data sources used is included in Annex 2 Mapped variations in NHS expenditure and activity relating to blood cancers Researched different methodologies for estimating the personal, health service and economic costs of blood cancers Conducted an analysis of the estimated costs of blood cancer to the economy, using data on incidence, survival and mortality, as well as information on earnings, employment rates and economic output Modelled the potential economic impact of changes to incidence and improvements in survival Analysed the potential impact of the NHS reforms on the delivery of services for blood cancers, and developed recommendations about how the reforms can best be applied to improving outcomes The report is based on the costs relating to England only, due to the quality of data that is available on health service costs. However the key themes will also be applicable to Scotland, Wales and Northern Ireland. The report gathers available evidence and data on blood cancers. The majority of figures and costs expressed in this report therefore relate to lymphoma (Hodgkin and non Hodgkin), leukaemia and myeloma for which data were readily available. These categories of blood cancer together account for over threequarters of total blood cancer diagnoses in England. Estimates of costs are therefore likely to be low and further work is needed to prospectively gather similar data on the other blood cancers. The report is intended to stimulate debate about the next steps in improving blood cancer outcomes. By quantifying the impact of blood cancers, we hope to focus the minds of policymakers on the economic as well as human benefits of improving treatment, services and outcomes. Blood cancers: improving outcomes and efficiency l 11

11 Chapter 2: About blood cancers Blood cancer is a generalised term for a malignancy which attacks the blood cells, bone marrow or lymphatic system. The World Health Organisation s Classification of Tumours of Haematopoietic and Lymphoid Tissues lists over 140 different types of blood cancers, ranging from the relatively common to the ultra rare. A full list of this classification of blood cancers is included in Annex 1. The main groups of blood cancers are: Leukaemia cancers of white blood cells or the stem cells found in bone marrow that will become white blood cells. Leukaemia cells occupy the bone marrow and interfere with cell development, which results in the insufficient production of white blood cells, red blood cells and platelets, leading to symptoms such as a weakened immune system, anaemia and an increased risk of bleeding. The various types of leukaemia are defined by the type of white blood cell that is involved. Lymphoid leukaemia affects lymphocytes or their precursors, while myeloid leukaemias are those involving any other type of white cell. Leukaemias can be rapidly progressing (acute) or slow to develop and progress (chronic) Lymphoma cancers of specific types of white blood cells called lymphocytes. Different lymphocytes have different functions including the production of antibodies and control of other cells of the immune system. They pass through the bloodstream and the lymphatic system which consists of a network of connected nodes, many of which are located in the armpits, neck and groin. Hodgkin lymphoma is characterised by the presence of a particular type of abnormal lymphocyte, and has two peaks of incidence between 15 and 35 years and over 50 years. With treatment, the majority of people with Hodgkin lymphoma survive beyond five years of diagnosis, especially if the cancer is diagnosed at an early stage. Non Hodgkin lymphoma (NHL) incorporates the 30 plus other types of lymphoma and can be aggressive or indolent. Aggressive NHLs often respond well to intensive, short term therapy and may be cured, whereas indolent types are rarely cured but rather go into long term remission with treatment followed by relapse. Patients may experience several cycles of remission and relapse Myeloma cancer of plasma cells, which multiply in the bone marrow or more rarely in other parts of the body. This leads to the suppression of the production of red and white blood cells and platelets, and the production of large quantities of an abnormal antibody like protein, called paraprotein, and reduced levels of normal antibodies. Symptoms include bone fracture, anaemia and kidney damage. Myeloma normally occurs in older people, and remains incurable despite recent advances in its treatment Rarer forms of blood cancer as well as the more prevalent forms of disease, blood cancers encompass a wide range of extremely rare cancers. Due to limited data availability on these rarer forms of blood cancer, they have not been included in the calculations included in this report unless otherwise stated For the purposes of the analyses undertaken later in this report, the World Health Organisation s International Classification of Diseases (ICD) codes C81, 82 85, 90, are used (i.e. the three main groups of blood cancer) l Blood cancers: improving outcomes and efficiency

12 There over 140 different recognised types of blood cancer 6 In 2007, 19,619 people received a primary diagnosis of one of the three main types of blood cancer in England 7 Incidences range from over 9,000 people for the most common form of blood cancer to less than 200 for the rarer types In 2007, the youngest person diagnosed with blood cancer was under 1 year old, whilst the oldest was over 85 At the end of 2006, 110,000 people were living with a diagnosis of blood cancer in England 8 Around 10,000 people die each year from blood cancer in England 9 Incidence Incidence is the number of people diagnosed with a condition in a particular year. In 2007, 19,619 people were registered as diagnosed with one of the three main forms of blood cancer, representing 8% of total cancer diagnoses that year 10. Incidence is increasing. Since 1998, incidence has increased by 18%. Within blood cancer, incidence was highest in 2007 for non Hodgkin lymphoma (NHL). Affecting largely those above the age of 50, NHL is the most common type of blood cancer, amounting to 45% of all blood cancers diagnosed. Although public awareness of the condition is considerably lower than for the big four cancers (bowel, breast, lung and prostate), non Hodgkin lymphoma is the fifth most common cancer being diagnosed by clinicians in England 11. Myeloma accounts for nearly 17% of all blood cancer cases, and in 2007 over 80% of patients with myeloma were over the age of Although like all blood cancers, a large amount of research has been dedicated to finding an underlying cause, no clear evidence has yet been discovered, although there are thought to be multiple potential trigger factors. Whilst most leukaemias affect older people, they are also the most common cancers in children, with most children developing the disease between ages 2 and 4. In 2007, 1,367 cases of cancer were diagnosed in children (0 14 years), with a slightly higher incidence in boys than in girls 13. Of the total incidence of all cancers diagnosed in children almost a third was with a form of leukaemia. Blood cancers: improving outcomes and efficiency l 13

13 Figure 2. Incidence of blood cancers in England The graph shows incidence of blood cancer in England from the year 1998 to The data were taken from ONS registrations of new diagnoses of cancer in England 14. The number of registrations of all types of blood cancer in England increased by 18% between Incidence has risen most sharply for primary diagnoses of non Hodgkin lymphoma, with a 28% increase in registrations in less than 10 years. Survival Cancer survival measures the proportion of patients diagnosed with a particular cancer who are alive a certain number of years after their initial diagnosis. Cancer survival tends to be measured at one, five and ten year intervals. The challenge in measuring survival is that there is an inevitable lag in the availability of data, meaning that it is not a particularly sensitive measure of the quality of a service, or the outcomes delivered. The latest available survival data pertaining to blood cancers are available from the Northern and Yorkshire Cancer Registry and Information Service (NYCRIS), which collects survival data from four cancer networks in the North East of England 15. Blood cancers include a range of curable and incurable forms of disease. Therefore for some forms of cancer, a good outcome will be for the patient to live a longer and healthier life, whereas for others it will be to eliminate the cancer entirely. Some patients will have a blood cancer which can be manageable for a period, but the patient may suffer relapses in their condition; for certain patients this cycle may occur numerous times. 14 l Blood cancers: improving outcomes and efficiency

14 Figure 3. Relative age standardised five year survival rates Survival rates for Hodgkin lymphoma are the highest among blood cancers and significantly higher than the average for all cancer types, with 91% of patients surviving beyond a year of their diagnosis, and 79% beyond five years. Conversely, despite huge improvements in survival in myeloma over recent years, it is still incurable. Latest figures report that 66% live a year beyond diagnosis and 27% of patients live beyond five years. For patients diagnosed with non Hodgkin lymphoma, 72% will live for one year, and 52% for five years. Survival rates for leukaemia are similar, with 72% surviving one year and 50% surviving five years 16. However, there remain significant variations in survival rates between individual patients which will need to be addressed if overall outcomes are to be improved. Figure 4 shows the progress that has been made in improving survival rates between 1971 and The data are for England and Wales and cover trends in three different groups of blood cancers as data for Hodgkin lymphoma were not available 17. As can be seen, progress has been significant across all three groups of blood cancers. This was most marked in leukaemias, with the survival rate increasing nearly 1% each year over the period. This increase in survival can be attributed to a range of factors, including the delivery of more specialised care, the availability of more effective treatments and improved supportive care. Blood cancers: improving outcomes and efficiency l 15

15 Prevalence Prevalence is the number of people who are living with a diagnosis of a condition at a defined moment in time. For all blood cancers there are approximately 110,000 people in England who are living with or beyond a diagnosis of blood cancer in the last 20 years 18. This constitutes over 50,000 people living with a diagnosis of non Hodgkin lymphoma and 11,000 people with a diagnosis of myeloma 19. Mortality Mortality is the number of people who die from a condition in a particular year. Although advances in treatment have significantly improved patients survival, blood cancers remain a major killer. In 2007, 9,956 died from a form of blood cancer 20. Figure 4 below shows the number of deaths between 2001 and 2009, from the main groups of blood cancers for which data were available 21. Since 2001, the numbers of registrations of deaths for non Hodgkin lymphoma and leukaemia have converged. This is surprising given that incidence levels are markedly higher for non Hodgkin lymphoma than leukaemia. For instance in 2007, incidence for non Hodgkin lymphoma was 8,529 people whilst incidence for all leukaemia was 6,024 22, yet in that same year only 88 more people died as a result of non Hodgkin lymphoma than than leukaemia 23. This reflects the higher overall survival rates associated with non Hodgkin lymphoma in comparison to some other blood cancers. Figure 4. Death registrations from blood cancers in England between l Blood cancers: improving outcomes and efficiency

16 Treatment and care for blood cancer For most blood cancers, there is good evidence that a patient s survival chances are improved if their cancer is diagnosed at an early stage 24. Well informed primary care professionals who can detect the early stages of the diseases are vital in ensuring that patients with blood cancers are diagnosed at the earliest stage possible. However, the symptoms of many blood cancers can be non specific and this can cause significant and damaging delays in identifying the signs and symptoms of a blood cancer, leading to a potential delay in referral and diagnosis. Also, due to the complex and numerous nature of many blood cancers, specialist pathology services are required to ensure that a patient receives an accurate diagnosis and that a clinician s treatment decision is informed by the right information. They may include various biopsy, imaging and genetic analysis facilities. Developing specialist haemato pathology services has been a major challenge for the NHS and a number of cancer networks have been very slow to put in place such services 25. Different blood cancers will be treated in different ways due to the differences in biology of the diseases. Certain blood cancers receive no treatment at the time of diagnosis. The practice is variously referred to as watch and wait, watchful waiting and active monitoring. Some patients may never need treatment and die of a cause other than their blood cancer. However, the majority will require active treatment at some stage. For those patients receiving active treatment, common elements of the treatment and care package include: Licensed drug treatment Unlike for many other cancers where surgery is the main initial treatment, drugs are often used to treat blood cancers as a first option. Different forms of drug treatment include the use of cytotoxic drugs (chemotherapy) and immunotherapy in the form of modern monoclonal antibodies, which are designed to target particular receptors or proteins. Some cancer drugs can be administered in tablet form whereas others need to be given by injection or infusion. Off label treatment For extremely rare blood cancers, there may be no licensed treatments. This can be due to a number of factors, including the difficulties in conducting trials for extremely rare diseases. In these circumstances clinicians may wish to prescribe drugs which are licensed for more common forms of blood cancer which nonetheless have a similar biology of disease to the very rare form of cancer affecting the patient. This practice has been described as near label prescribing. Audits of NHS practice have found that near label prescribing is particularly prevalent in blood cancers 26. Near label prescribing creates particular challenges for the NHS and for clinicians in that it can be difficult to determine when such treatment is appropriate due to the inevitable scarcity of evidence to guide decision making. For children with blood cancers, most treatments will be off label due to the difficulties in conducting trials in younger people. Radiotherapy Some forms of blood cancer can be treated by radiation targeted at cancerous cells. It may also be used palliatively to relieve bone pain, or pain caused by an enlarged liver, spleen or lymph nodes. Radiotherapy can also be used to condition patients for bone marrow transplants. Blood cancers: improving outcomes and efficiency l 17

17 Stem cell treatment High dose chemotherapy can be effective in destroying cancerous cells in the bone marrow. However, due to its intensity, it may also destroy normal, healthy blood cells and tissue in the bone marrow. Removing and replacing stem cells from a patient, or supplying stem cells from a donor, can therefore be beneficial in retaining a patient s ability to produce healthy blood cells. The immune system cells produced by donor stem cells can also be effective in killing remaining cancer cells in a patient s body. Stem cells may be taken from a patient s own blood, or from the bone marrow, peripheral blood stem cells or umbilical cord blood of a compatible donor. These are delivered to a patient through infusion into a vein or, in a technique which is currently still in trials, directly into the marrow space within a bone. Supportive treatment This is a huge part of blood cancer patients experience. It includes managing bleeding and bruising, anaemia, bone pain and renal dysfunction, hair loss, nausea, infections, surgical procedures such as vertebroplasty and balloon kyphoplasty to repair skeletal fractures, physiotherapy, and bone strengthening drugs. While needed to varying degrees depending on the individual, these all have implications on the intensity of care. The exact forms of supportive care needed will vary between disease types and between patients. Any patient who receives active treatment is likely to receive several types of supportive care. Supportive treatment of blood cancers may cause additional complications which have to be managed. Red blood cell and platelet transfusions may be administered to a patient whose levels of healthy blood cells have decreased markedly as a result of the reduction in the production of these cells in the bone marrow; this reduction may be because of displacement of normal marrow by cancer cells or by direct suppression of normal marrow activity by cancer cells. Red cell transfusions can therefore help manage the symptoms of anaemia, and adding platelets can reduce excessive bleeding. However, because platelets are short lived in the circulation, they are normally only used as a precaution if a patient needs surgery or is otherwise at acute risk. Side effects and late effects of treatment A blood cancer diagnosis and treatment can be extremely traumatic for a patient and their family. Treatment can be debilitating, with significant side effects and toxicities. Therefore the support and care that they receive during and after their treatment is vital in enabling them to make decisions about treatments which are appropriate to them, and in helping them manage the effects of treatment and, once it has ended, recover to lead as healthy and active a life as possible. For some patients with incurable forms of blood cancer, such as myeloma, treatment is unlikely to end. Even for those patients where active treatment has finished, follow up and monitoring for recurrence and the late effects of treatment will be necessary. Personalised treatment As knowledge of blood cancers increases it is becoming clear that there are many different genetic subtypes of cancer, even within more common forms of blood cancer such as non Hodgkin lymphoma and myeloma. Treatments will be increasingly tailored to different genetic subtypes and clinicians will need to be able to adopt flexible approaches to designing treatment regimens. 18 l Blood cancers: improving outcomes and efficiency

18 Cross specialist care Clinical nurse specialists can play a significant role in supporting patients, including advising on treatment options, signposting patients to support on issues such as nutrition, benefits advice and counselling. Evidence suggests that patients value the support of clinical nurse specialists very highly and that they have a significant impact on the quality of their treatment and care 27. Other specialists also play an important role in managing a blood cancer patient s condition, including dieticians and those involved in other support services. Information It is also important that patients receive high quality written information at every stage of their cancer journey. Where possible, this should be tailored to their own particular needs and circumstances. Blood cancer charities provide a range of expert and tailored information to support patients and their carers with the difficult decisions surrounding treatment and care options. The Department of Health s cancer information prescriptions programme is also radically improving the quality and personalisation of information available to patients 28. However, information pathways for some blood cancers have only recently been developed. For some forms of blood cancer, pathways have yet to be established. Therefore only a small minority of blood cancer patients currently receive information prescriptions. Blood cancers: improving outcomes and efficiency l 19

19 Chapter 3: The cost of blood cancers to the health services The costs of blood cancers to the health services are the costs involved in the care and treatment of patients. Information on NHS expenditure on blood cancers is recorded in programme category 02i 29. This includes costs associated with treatment, inpatient care, as well as care delivered in the community for people with a prior diagnosis of blood cancer. However, category 02i does not include the costs of investigations prior to diagnosis. This is likely to increase the costs associated with blood cancer care significantly. This is particularly significant for certain forms of blood cancer where in a small number of cases relatively prevalent precursor conditions may progress into blood cancer. For example it is estimated that 1 2% of the population has monoclonal gammopathy of unknown significance (MGUS), which itself requires no treatment; however a very small proportion of MGUS diagnoses will progress into myeloma 30. It is important to note the programme budget data are subject to accurate coding by NHS organisations. Without accurate coding, expenditure may be recorded under a different category to 02i. As noted in a recent report from the National Audit Office 31, there is evidence to suggest that NHS organisations do not code blood cancer activity accurately, including: PCT level expenditure often fluctuates year on year, and this fluctuation cannot be explained by variations in incidence or activity Commissioners with similar health profiles record markedly different levels of expenditure, and over half of these differences cannot be explained by variations in incidence, activity, market factors or budget allocation Nonetheless, programme budget data remain the best estimates available on the overall cost of blood cancers. For the purpose of the overall cost analysis in this report, data on expenditure for 2007/08 has been used as this aligns with the latest available incidence data. Data showing geographical variations in expenditure and activity used below are the latest available. The cost of blood cancer to the NHS Overall, the NHS spent 550 million on all types of blood cancers in 2007/08 32, 33 This represents 11% of total expenditure on cancer and 0.6% of total NHS expenditure in 2007/08 Hospices spent an estimated additional 26.3 million on the three main types of blood cancers in 2007/08 Recorded expenditure on all types of blood cancers at PCT level in 2008/09 varied from 2.59 to per capita nearly a 10 fold variation Variations in expenditure Figure 5 shows the variation in expenditure on all types of blood cancer according to commissioner. The data are based on the residential location of a patient. The data were calculated using the expenditure on blood cancer by each PCT divided by the unified weighted population. Weighted population estimates adjust for variations in the demographic profile of a population. The quartiles represent the total number of PCTs divided into four groups based on their level of expenditure per capita. The fourth quartile is the highest spending group of PCTs. 20 l Blood cancers: improving outcomes and efficiency

20 Figure 5. Spend per capita on blood cancers by PCT, 2008/09 (unified weighted population) Spend per capita First quartile Second quartile Third quartile Fourth quartile The national average expenditure per capita on blood cancers at PCT level was for 2008/ The range of expenditure varied from 2.59 to per capita nearly a 10 fold variation, although over 75% of PCTs kept expenditure within one standard deviation of the average. Figure 6 shows the distribution of expenditure; the graph indicates a small number of PCTs with unusually high expenditure per capita. Blood cancers: improving outcomes and efficiency l 21

21 Figure 6. Distribution of PCT spend per capita on blood cancers, 2008/09 (unified weighted population) Variations in activity Although there are problems with the recording of expenditure on blood cancers, data on activity, which are key drivers of cost, appear to be more accurate. The Cancer Reform Strategy noted that major drivers of cost in cancer care include 36 : Inpatient care, measured by bed days per capita for people with a diagnosis of blood cancer Unplanned care, measured by the number of emergency admissions per capita for people with a diagnosis of blood cancer The Cancer Reform Strategy also noted that blood cancers incur a disproportionately high number of elective and emergency bed days compared to incidence. This is explained by the nature and biology of blood cancers, as well as the intensity of treatments 37. It does not, however, explain variations in activity. In analysing variations in NHS activity, lymphoma is used as an illustrative example as the Department of Health was only able to provide the relevant data with regard to this type of blood cancer. Figure 7 shows the number of elective bed days by PCT per 100,000 population for 2008/09, where the admission was planned in advance for a person with a primary diagnosis of lymphoma 38. The fourth quartile represents those PCTs with the highest number of elective bed days per 100,000 population. 22 l Blood cancers: improving outcomes and efficiency

22 Figure 7. Elective bed days for lymphoma per 100,000 population by PCT, 2008/09 (unified weighted population) Elective bed days First quartile Second quartile Third quartile Fourth quartile The average number of elective bed days per 100,000 population was 413. However, this figure ranges across England from 106 bed days to 2,239 for the same year, representing a 21 fold variation. A high number of elective bed days may suggest that a PCT does not have the availability of technologies to deliver care in the home or in a community setting. It may also suggest that treatment is being received as an inpatient rather than on a day ward, which has become common practice for many types of blood cancer. Generally, treatment delivered on a day ward or in a community setting is more favourable to patients than having to be admitted overnight. However, there will be circumstances where it is clinically necessary to admit patients or indeed where patients prefer this treatment approach. This may be true for older patients, who are more likely to live alone and without the support of family or carers. Blood cancers: improving outcomes and efficiency l 23

23 Figure 8. Emergency bed days for lymphoma per 100,000 population by PCT, 2008/09 (unified weighted population) Emergency admissions First quartile Second quartile Third quartile Fourth quartile Figure 8 above shows the number of emergency bed days by PCT per 100,000 population for the latest year available, where the primary diagnosis was lymphoma 39. The fourth quartile represents those PCTs with the highest number of emergency bed days per 100,000 population. The average rate of episodes for emergency bed days is 548 per 100,000. However the rate of emergency bed days ranges across England from 198 to 2,917, representing more than a 14 fold variation. Emergency admissions often occur when complications either due to disease progression or side effects associated with treatment have not been managed effectively. Also, for some blood cancers, such as myeloma and acute leukaemia, many patients are first diagnosed following an emergency admission 40. Emergency bed days are upsetting for patients, damaging for health outcomes and costly to the NHS. Many of the complications of blood cancer are relatively predictable and therefore should be able to be managed on a planned basis. The cost of an emergency bed day is estimated at 250 by the Impact Assessment of National Chemotherapy Advisory Group 41. If all PCTs in England achieved the rate of emergency bed days for lymphoma of the lowest quartile, approximately 22 million could be saved in costs 42. Some complications are of course not predictable and do require inpatient treatment. In these circumstances it is vital that patients are admitted and receive prompt attention from acute oncology teams which include blood cancer expertise or dedicated haematology teams. 24 l Blood cancers: improving outcomes and efficiency

24 Figure 9. Emergency admissions for lymphoma per 100,000 population by PCT, 2008/09 (unified weighted population) Emergency admissions First quartile Second quartile Third quartile Fourth quartile Figure 9 above shows the variation in emergency admissions for lymphoma per 100,000 by PCT for the latest year for 2008/09. The fourth quartile represents those PCTs with the highest number of emergency admissions per 100,000 population. The average number of episodes of emergency admissions where the primary diagnosis is lymphoma is 48 per 100,000 population by PCT, though figures ranged from 15 to Sometimes marked variation occurred in similar geographic locations; for example North Staffordshire PCT recorded 30 episodes of emergency admissions per 100,000 of its population, whilst neighbouring South Staffordshire PCT recorded 184 episodes 44. This variation cannot be explained by differences in incidence, prevalence or case mix alone 45. Blood cancers: improving outcomes and efficiency l 25

25 It is important to note that data collected on emergency admissions relates to the number of episodes rather than the number of patients. It is therefore possible and indeed likely that some patients will have been admitted as an emergency on a number of occasions, whereas others will have been successfully treated on a planned basis throughout their treatment. Nonetheless, it is notable that there is an 18 fold variation in the number of emergency admissions. Incidence or outcome alone cannot explain this. A high emergency admission rate could highlight a trend in late diagnoses, implying failures earlier in the patient pathway. There are significant cost implications of this variation in emergency admission rate 46. Hospice costs The cost of running a hospice is not fully captured in NHS programme budgeting data. This is because the majority of hospices in the UK are managed and funded by independent charitable sources. The National Audit Office end of life care data found the 2006/07 expenditure of all independent hospices in England to be 500 million % of this figure was paid by Primary Care Trusts (PCTs) 48. To estimate a figure, the remaining 74% was adjusted for inflation to produce an amount spent by non NHS hospices in the year 2007/08 as million. ONS mortality statistics show that of all hospice deaths in England and Wales, 93% are due to cancer, which is 16.9% of all cancer deaths 49. Applying this figure to blood cancer mortality data for England, it can be estimated that, in 2007, 1,684 deaths from the main types of blood cancer occurred in a hospice setting. Using the spending figures above, it is possible to calculate a realistic estimate of hospice costs for blood cancer. It is estimated that the total additional spend by hospices on blood cancer for the year 2007 was 26.3 million. Future cost pressures It is important to note that the cost pressures on blood cancer services are not static. Indeed costs can be expected to rise due to four key factors: As set out in Chapter 2, incidence of blood cancers is increasing. This is primarily a function of the ageing population. Earlier diagnosis will also increase the number of patients alive with a blood cancer. The result of this is that more patients will require treatment and care Blood cancers are increasingly treatable, often with treatments tailored to a patient s own particular biology. This will mean that patients will receive more lines of treatment in future New forms of treatment are more expensive. Developments in treatment, including new drugs and increasingly sophisticated stem cell treatment, are improving patients survival chances. However, newer treatments are often more expensive and tend to be used in combination with, or in addition to, existing interventions, adding costs into the system. Developments in stem cell treatment, such as the use of cord blood, also require investment in collection and storage Patients are increasingly living longer with blood cancer. Some patients will live for long periods on active treatment. However a patient s support needs will not begin and end with treatment. Many patients will require long term support, including follow up, management of the late effects of treatment and ongoing assistance to manage the effects of their cancer 26 l Blood cancers: improving outcomes and efficiency

26 Recommendations 1. The Department of Health should work with commissioners to improve the recording of expenditure data on blood cancers. Commissioners which are significant outliers in terms of expenditure on blood cancers should assess whether their level of expenditure is appropriate 2. Commissioners should critically appraise the range in elective bed day occupation by blood cancer patients between health economies and work with providers to identify opportunities to reduce unnecessary bed use where appropriate 3. Providers should take steps to reduce emergency admissions for patients receiving treatment for a blood cancer, investigating other ways of managing side effects which are more cost effective and better for a patient s wellbeing Blood cancers: improving outcomes and efficiency l 27

27 Chapter 4: The cost of blood cancers to patients and their families As well as blood cancers being a significant cost to health services, they also have a major impact on patients and their families. This chapter explores both the direct and indirect financial costs to patients and families. It is important to stress that as well as measurable financial costs there are immeasurable costs associated with a diagnosis of blood cancer. These include pain and suffering, emotional distress, grief and missed opportunities to participate in fulfilling and rewarding activities. Non financial costs of blood cancers Coping with symptoms and treatment The burden of coping with the numerous symptoms that can be caused by a blood cancer, and the sideeffects of the often intensive treatments used to treat the cancer, is huge. Symptoms for different blood cancers include severe pain in the bones, lymph nodes and certain organs, increased susceptibility to infection, excessive bruising and bleeding, bone fractures, constipation, breathlessness, persistent fever, anaemia, itching, weight loss, night sweats and even kidney failure. Radiotherapy can cause fatigue, skin damage and hair loss. Chemotherapy side effects include fatigue, nausea and vomiting, hair and nail damage and numbness. Exercise Exercise is an important part of many people s lives and the curtailing of this as a result of a blood cancer diagnosis can have significant psychological and physical impact. In addition to the reduction in physical capability caused by symptoms and treatment, the reduced strength of the immune system caused by some blood cancers can rule out gentle exercise such as swimming, due to the risk of infection. Relationships The diagnosis and treatment of blood cancers places great physical and mental strain on a patient, and the psychological impact of this on family and friends can be significant. In addition to the emotional aspects of the disease, practical participation in activities such as meeting friends, seeing children or being with a partner can be seriously affected. Fertility and sex life The symptoms and treatment of blood cancer can have a significant negative impact on the sex lives of a patient and their partner. Chemotherapy can also have an impact to varying degrees on both male and female fertility; some patients are advised to freeze sperm or ovum samples before embarking on intensive treatments. A diagnosis of blood cancer can also set back any plans for becoming pregnant, as this is advised against during treatment as dangerous complications can arise. This advice extends well beyond the conclusion of treatment due to the risk of relapse. Hobbies and interests Reduced capability, energy levels and physical freedom caused by blood cancer can rule out the pursuit of many fulfilling activities which a patient would otherwise undertake. Personal career A diagnosis of blood cancer can remove a patient from their normal working life for extensive periods, and many patients will never return to work as a result of their diagnosis 50. Whilst financial costs to the patient, their family and the economy exist as a result of this, the non financial cost can be great. Delayed or lost aspirations, lowered self esteem and difficult adjustments to daily life can all result from the impact of blood cancer on a person s ability to work. 28 l Blood cancers: improving outcomes and efficiency