Are older people receiving cancer drugs?

Are older people receiving cancer drugs? An analysis of patterns in cancer drug delivery according to the age of patient December 2013 1

NHS England INFORMATION READER BOX Directorate Medical Operations Patients and Information Nursing Policy Commissioning Development Finance Human Resources Publications Gateway Reference: 00549 Document Purpose Resources Document Name Author Publication Date Target Audience Additional Circulation List Are older people receiving cancer drugs?an analysis of patterns in cancer drug delivery according to the age of patient NHS England December 2013 Medical Directors, Associate Directors, SCNs Programme of Care Directors for specialised services in medical directorate National Cancer Research Network clinicians National Cancer Research Initiative partners National Cancer Equality Initiative members CCG Clinical Leaders, NHS England Area Directors Description Cancer is predominantly a disease of older age, so if we wish to improve cancer outcomes, we should pay close attention to the care and treatment of older people.this report makes an important contribution to our understanding of access to chemotherapy treatment by providing baseline data on which to build further work. Cross Reference Superseded Docs (if applicable) Action Required Timing / Deadlines (if applicable) Contact Details for further information The impact of patient age on clinical decision making in oncology, DH [2012] N/A N/A N/A Robert Martin Equality and Health Inequalities NHS England 6th Floor Skipton House London SE1 6LH Document Status 0 This is a controlled document. Whilst this document may be printed, the electronic version posted on the intranet is the controlled copy. Any printed copies of this document are not controlled. As a controlled document, this document should not be saved onto local or network drives but should always be accessed from the intranet 2

Are older people receiving cancer drugs? An analysis of patterns in cancer drug delivery according to the age of patient Produced by the NHS England National Cancer Equality Initiative in partnership with the ABPI Pharmaceutical Oncology Initiative. First published: December 2013 3

Contents Table of figures... 5 Foreword... 6 Acknowledgements... 8 1. Executive summary... 9 2. Introduction... 12 3. Background... 14 4. Project methodology... 21 5. Age profile of chemotherapy in England... 26 6. Assessing the age profiles of chemotherapy patients in different trusts... 40 7. Improving support for older people with cancer... 48 References... 54 4

Table of figures Figure 1: Patient data included in the study, by cancer type... 22 Figure 2: Recording of stage of disease and performance status, by cancer type... 24 Figure 3: Diagnoses of breast cancer and courses of chemotherapy given to breast cancer patients, by age... 27 Figure 4: Absolute numbers of courses of chemotherapy for breast cancer by stage... 28 Figure 5: Proportion of courses of breast cancer chemotherapy by recorded stage. 29 Figure 6: Performance status of breast cancer patients receiving chemotherapy, by age... 30 Figure 7: Diagnoses of colorectal cancer and courses of chemotherapy given to colorectal cancer patients, by age... 32 Figure 8: Absolute numbers of courses of chemotherapy for colorectal cancer by stage... 33 Figure 9: Proportion of courses of colorectal cancer chemotherapy by recorded stage... 34 Figure 10: Performance status of colorectal cancer patients receiving chemotherapy, by age... 35 Figure 11: Deaths from lung cancer and courses of chemotherapy given to lung cancer patients, by age... 36 Figure 12: Absolute numbers of courses of chemotherapy for lung cancer by stage 37 Figure 13: Proportion of courses of lung cancer chemotherapy by recorded stage... 38 Figure 14: Performance status of lung cancer patients receiving chemotherapy, by age... 39 Figure 15: Age distribution for early stage breast cancer, by provider... 41 Figure 16: Age distribution for advanced breast cancer, by provider... 42 Figure 17: Age distribution for early stage colorectal cancer, by provider... 43 Figure 18: Age distribution for advanced colorectal cancer, by provider... 44 Figure 19: Age distribution for early stage lung cancer, by provider... 45 Figure 20: Age distribution for advanced lung cancer, by provider... 46 5

Foreword The NHS Constitution makes it clear that a core duty of the NHS is to promote equality. Cancer is predominantly a disease of older age, so if we wish to improve cancer outcomes, we should pay close attention to the care and treatment of older people. Indeed inclusive services which meet the needs of older people will undoubtedly be better able to respond to the individual needs of people of every age. This report makes an important contribution to our understanding of access to chemotherapy treatment. It uses data from the new systemic anti-cancer drug therapy (SACT) dataset and affirms its potential, as the dataset matures, to identify trends in clinical practice and to inform action to improve the quality and consistency of services. Its most striking finding is the step change in the likelihood of receiving chemotherapy for breast, lung and colorectal cancer that occurs after the age of 65. It is also clear that there are variations in the age profile of patients receiving treatment at different hospitals. The reasons for these patterns require further investigation. It is important to stress that the factors determining whether chemotherapy will be an appropriate treatment for an individual are complex. Cancer drugs can help prevent cancer recurring or, when it does, help people live longer and better lives. Yet chemotherapy can also be toxic, causing short and long term side effects. A careful balance needs to be struck between potential benefits and harms. Given the association between age, co-morbidity and frailty, there are persuasive reasons why chemotherapy rates decline with age. There are also complex relationships between clinician and patient preference and, in some cases, alternative forms of treatment are being offered. Yet this does not mean that older people cannot benefit from chemotherapy and it is important that, in assessing suitability for treatment, clinicians consider a patient s health rather than their age. This report cannot answer the question of whether treatment is appropriate or whether practice is good or bad. One important gap in our current knowledge reinforces this caution: we do not yet have access to data on the performance status of all older people regardless of whether or not they receive chemotherapy or other radical treatment. However, given the marked reduction in provision of chemotherapy that occurs after the age of 65, it is possible that treatment decisions are being overly influenced by chronological age alone. Although further investigation is required into the causes and appropriateness of the decline in chemotherapy treatment after the age of 65, this should not delay action to tailor cancer services to better meet the needs of older people. We need to find ways to embed the assessment of older people with cancer into treatment pathways and to support shared decision making: this challenges clinicians and commissioners alike to explore the quality of the service provided locally for older people. 6

This work was made possible because of collaboration between the National Cancer Equality Initiative (NCEI) and the Pharmaceutical Oncology Initiative (POI) which commissioned analysis of data collected by the SACT programme as part of the work undertaken by the National Cancer Intelligence Network (NCIN). NCEI will continue to work with the NCIN to enable the publication of accessible information on all aspects of the treatment and services offered to older people affected by cancer, including chemotherapy and to understand the relationship between access, age and deprivation. We will also continue to work with all stakeholders who have a role in improving cancer services for older people to address the issues identified in this report and make progress on the important actions it identifies. We would encourage the Chemotherapy Clinical Reference Group to ensure that the findings in this report are taken into consideration in the development of service specifications and that providers take steps to ensure they are doing all they can to offer appropriate cancer treatment and care to older people. Sean Duffy National Clinical Director for Cancer Services, NHS England Matt Kearney National Clinical Adviser, NHS England Co-chairs, National Cancer Equality Initiative 7

Acknowledgements This report is the result of a partnership between the National Cancer Equality Initiative (NCEI) and the Pharmaceutical Oncology Initiative (POI). It was only possible because of the information collected by the SACT programme under the auspices of the National Cancer Intelligence Network (NCIN). The project has been overseen by: Joanne Rule, NCEI Di Riley, NCIN Kellie Peters, SACT Programme Sue Forsey, SACT Programme Ken Lloyd, SACT Programme Jackie Holding, POI The report was drafted by Mike Birtwistle, a member of the NCEI steering group. We are indebted to the clinical advice provided by Charles Wilson, Consultant Oncologist, Cambridge University Hospitals NHS Foundation Trust and David Dodwell, Consultant Oncologist, Leeds Teaching Hospitals NHS Trust and to Macmillan Cancer Support for funding the design. About the NCEI The NCEI is an NHS England initiative to bring together key stakeholders from groups including healthcare professionals, the voluntary sector, academics, and equality champions. It works to support a co-ordinated approach to improving patient experience, clinical effectiveness and safety, driven by a clear focus on tacking inequalities and promoting equality in cancer. It advises on gaps in research and works with stakeholders to improve the evidence base. About the POI The Pharmaceutical Oncology Initiative is a group of ABPI member pharmaceutical companies, which work in collaboration with the DH, NHS and other key partners to improve the delivery of cancer services and access to medicines. The POI member companies supporting this project are Amgen, AstraZeneca, Boehringer Ingelheim, Bristol-Myers Squibb, Celgene, GlaxoSmithKline, Janssen, Lilly, Merck Serono, MSD, Napp, Novartis, Pfizer, Sanofi and Takeda. About the NCIN The National Cancer Intelligence Network (NCIN) is a UK-wide partnership operated by Public Health England. The NCIN coordinates and develops analysis and intelligence to drive improvements in prevention, standards of cancer care and clinical outcomes for cancer patients. 8

1. Executive summary 1.1 The majority of people living with cancer are diagnosed and treated over the age of 65 and more than 50% of cancer deaths occur in the over 75s. Cancer is therefore predominantly a disease of older age. Cancer services therefore need to be able to respond to and meet the needs of older people. 1.2 Yet delivering appropriate treatment and care to older people creates challenges. A series of reports have shown that too often the NHS has failed to provide the best possible services to older people. 1.3 Evidence from the field of cancer suggests that older people report a broadly positive experience of treatment and care, albeit with some areas where improvement is required. There is also evidence that cancer treatment rates decline with age. 1.4 To a certain extent this is to be expected. Cancer treatment is often invasive or associated with significant side effects. As a result of frailty or comorbidities, older people may be less well-equipped to cope with intensive treatment. Yet more intense treatment is often associated with better and longer term clinical outcomes. It is therefore important that we do all that we can to ensure that treatment is tailored to a patient s preferences, personal circumstances and wider health. Chronological age alone should not be used as a proxy for other factors. 1.5 This report focuses on the use of systemic anti-cancer drug therapy (SACT), also known as chemotherapy. Chemotherapy can play an important role in eradicating a patient s cancer, preventing it from returning, helping them live longer and improving their quality of life. However, it can also have negative consequences, causing side effects, damaging quality of life and short and long-term health, even contributing to early mortality. It is therefore important that decisions about treatment are carefully weighed and based on the best available evidence. 1.6 The information presented in this report provides the first ever comprehensive analysis of the use of chemotherapy for breast, colorectal and lung cancer in England in the context of age and performance status of the patient. It builds upon previous work by the National Cancer Equality Initiative (NCEI) and others, including the National Cancer Intelligence Network (NCIN) and the Pharmaceutical Oncology Initiative (POI). Further details of previous work can be found in Chapter 3. 1.7 The report utilises data from the SACT data set, a unique and new NHS resource which enables large scale analyses of routine chemotherapy clinical practice in England. The analysis is based on nearly 63,000 courses of chemotherapy delivered by 119 providers over a 13 month period. More details about the SACT data set and the fields used in this analysis can be found in Chapter 4. 9

1.8 It is important to stress that there is no correct level of chemotherapy treatment in older people and there may well be good reasons for some decline in chemotherapy rates with age, including co-morbidity and frailty, patient preference and, in some cases, alternative forms of treatment. This report based on the SACT dataset cannot answer the question of whether treatment is appropriate or whether practice is of high quality. But the patterns observed challenge clinicians and commissioners to explore the quality of services provided for older people. 1.9 Chapter 5 presents an analysis using England-wide data. It shows that the proportion of patients given chemotherapy declines rapidly from the age of 65 for breast, colorectal and lung cancer, when compared with the overall age profile of people with those cancers. 1.10 There appears to be a decline in the proportion of older patients who are given chemotherapy with a curative intent, i.e. as part of treatment for early stage cancer. In breast, lung and colorectal cancer there is a clear reduction in the likelihood of receiving chemotherapy, from around the age of 65. Some of this may be explained by alternative treatment options, patient choice or expectation, or because of clinicians assessment that the harms of such treatment outweigh the benefits. However, it may also be that the clinical decision about whether or not to give chemotherapy is sometimes being determined by chronological age rather than performance status of the patient. 1.11 Assessing the performance status of a patient is often a subjective process, which is part of the challenge in determining how to treat older people. However, the SACT data suggests that most patients receiving chemotherapy, irrespective of their age, have a good performance status. Unfortunately no data exist on the performance status of patients who might have been eligible for chemotherapy but did not receive it, as a result of a clinical decision or patient preference. This is an important gap in our knowledge because we cannot judge how many people with good performance status are not receiving chemotherapy. An audit of the personal characteristics of such patients would be invaluable in assessing the appropriateness of clinical decision-making for older patients. 1.12 Chapter 6 provides a high resolution analysis of a range of providers, based on records of over 20,000 courses of chemotherapy. It shows that clear variation in the age profile of chemotherapy patients occurs according to the hospital in which they are treated. 1.13 It does not seem plausible that differences in referral patterns or the age profile of populations served by hospitals could alone explain the variation. The reason for this variation requires further exploration. It seems likely that some variation at least will be caused by the use of age as a proxy for clinical factors, rather than differences in patient health status or preference. In addition, patterns of age distribution do not appear to be the same for different cancer types within the same hospital, suggesting that the approaches of different clinical teams may be a factor. 10

1.14 This study focuses on patterns in activity, rather than the intensity of treatment provided or the outcomes achieved for older people affected by cancer. As the SACT data set matures and is linked with other sources of intelligence it should also be possible to assess patterns in intensity and outcomes, including survival, quality of life and patient experience. 1.15 It is important that cancer services constantly assess whether they are delivering the best possible treatment and care to the population they serve. Increasingly, this population will be older and so it will be necessary to reengineer services to meet the needs of older people. 1.16 A joint project between the Department of Health, Macmillan Cancer Support and Age UK tested a range of approaches towards improving the support for older people and identified a series of principles which should underpin care. Ensuring that older people are offered appropriate treatment is the responsibility of multiple stakeholders. Chapter 7 describes a range of actions that different organisations may wish to consider in playing their part in ensuring older patients are offered appropriate treatment. 11

2. Introduction 2.1 Cancer incidence increases with age and, as the population ages, it will affect greater numbers of older people. Over a third (36%) of all cancers are diagnosed in people who are 75 or over and a further 17% are diagnosed in people between 65 and 74. Unsurprisingly, cancer mortality rates also increase with age and are therefore highest amongst the over 85s. Over 50% of all cancer deaths occur in patients aged over 75, amounting to an average of over 80,000 deaths per year 1. 2.2 As the population ages, these figures are set to increase. If we are to improve cancer outcomes, it is therefore important that we do all that we can to ensure that older people are able to benefit from the most appropriate treatment, care and support. 2.3 A succession of reports have highlighted that too often older people have not been offered the best possible treatment and care by the NHS. The Government and NHS England are working together to ensure that services are tailored to better meet the needs of older people. 2.4 Evidence from the Cancer Patient Experience Survey suggests that older people affected by cancer report a broadly positive experience of their care, although there are some issues such as access to clinical nurse specialists or the provision of information on side effects of treatment where further work is required. 2.5 Despite this, there is also growing evidence that older people are offered less intensive treatment. In cancer, more intense treatment is often associated with better and longer term clinical outcomes. However, it can also be associated with more significant side effects which can damage a patient s quality of life and their health. The question is therefore whether older people are given less intensive treatment for clinically appropriate reasons or whether age is sometimes used as an inappropriate proxy for other factors. 2.6 Age is often associated with other clinical factors, such as frailty and co morbidities which can reduce the ability of a patient to withstand cancer treatment - so it is perhaps unsurprising to observe the decline in the use of intensive treatment. At the same time, life expectancy continues to increase and many older people are enjoying healthy ageing, suggesting we should consider biological age and not chronological age in decision-making. 2.7 Our goal is to support the NHS in ensuring that treatment is tailored to a patient s preferences, personal circumstances and wider health. The work of the National Cancer Equality Initiative (NCEI) and its partners both through this project and others is intended to support this objective. 2.8 This report provides the first ever comprehensive analysis of the use of systemic anti-cancer drug therapy for breast, colorectal and lung cancer in England in the context of age and performance status of the patient. As well 12

as providing an England-wide overview, it provides a high resolution study of a number of chemotherapy providers, enabling an analysis of the variations that occur in the nature of caseload between different hospitals. It represents the first thematic analysis of data from the Systemic Anti-Cancer Therapy (SACT) dataset. 13

3. Background 3.1 The NHS has a statutory duty to reduce health inequalities and improve the health of those with the poorest outcomes. The NHS Constitution makes clear that a core duty of the NHS is to promote equality for all groups in society, including older people 2 : The NHS provides a comprehensive service, available to all irrespective of gender, race, disability, age, sexual orientation, religion or belief. It has a duty to each and every individual that it serves and must respect their human rights. At the same time, it has a wider social duty to promote equality through the services it provides and to pay particular attention to groups or sections of society where improvements in health and life expectancy are not keeping pace with the rest of the population. 3.2 A ban on age discrimination in NHS services was introduced in 2012, meaning that NHS services need to do everything they can to ensure that services do not unwittingly discriminate against older people. 3.3 As well as the legal and moral imperative, improving the treatment and care of older people affected by cancer can also play a significant role in improving outcomes. Tackling health inequalities and promoting equality of outcome in England is essential to achieving cancer survival rates which match the best performing countries in the world. 3.4 Cancer outcomes in older people (defined here as those over the age of 75) are poorer in the UK than they are in other comparable countries. It is estimated that if UK survival rates matched the highest performers in Western Europe for 75-84 year olds and outcomes in the USA for those aged 85 and over, then there would be 15,000 fewer cancer deaths every year 3. The reasons for this disparity are complex and are likely to include prevention issues, delays in diagnosis and treatment rates. 3.5 Given these factors, it is perhaps unsurprising that the quality of treatment offered to older people has been a significant concern for stakeholders. When the Department of Health developed Improving Outcomes: a Strategy for Cancer, over 35 submissions related directly to equality issues and a clear theme emerged that stakeholders are concerned that older people may not always be offered the most appropriate treatment. A strong desire was expressed for more to be done to explore the extent of this, the reasons for it and what could be done to support healthcare professionals in ensuring that older people are offered appropriate treatment. Since this time, the National Cancer Action Team and the DH have supported a range of projects to improve cancer care and treatment of older people. 3.6 Cancer patients may receive a range of different types of treatment. Surgery remains the primary form of treatment for most cancers and still cures more cancers than any other treatment modality. Radiotherapy cures the next 14

largest number of patients. Drug treatment the focus of this report is used to cure some forms of cancer (for example blood cancers) and can also be used to shrink tumours ahead of surgery, as an additive treatment to reduce the risk of recurrence after surgery or to help slow or reverse the progression of the disease, alleviating symptoms and extending a patient s life. 3.7 There is often a range of different drug treatment options for clinicians and patients. These may involve different drugs, different dosages or different durations of treatment. Treatment approaches may vary in their intensity, with clinicians needing to balance potential efficacy against side effects and impact on quality of life. 3.8 Intervention rates decline with age for all forms of cancer treatment. It is important to stress that there may be good reasons why older people are offered less intensive cancer treatment: Age is associated with the development of co morbidities and older people may well be less able to withstand the toxicities which can be associated with cancer treatment The evidence base for treatment in older people is also less comprehensive, with fewer older people enrolled in clinical trials Some older patients may be less willing to undergo more toxic treatment 3.9 Nonetheless, there is a concern that the use of chronological age alone is an inappropriate proxy for wider biological factors, such as co morbidity, and this may have an impact on the ability to achieve a positive outcome for a patient. This may be in part because there is no objective way of assessing biological age, when there clearly is for chronological age. 3.10 A significant focus for the National Cancer Equality Initiative (NCEI) has been to examine ways in which older people can be better supported by: Bringing together experts in the field to identify problems and areas of good practice, facilitating the spread of what works Working with other initiatives to ensure inequalities are both identified and addressed across the patient pathway Collaborating with the National Cancer Intelligence Network (NCIN) to identify areas where data collection can be improved within the NHS and ensuring that data are analysed and published to support service providers to make improvements Uncovering gaps in research and work with stakeholders and academic institutions to improve knowledge and evidence around cancer inequalities 15

3.11 A range of stakeholders have now undertaken important activity relating to cancer and older people, including the Royal College of Surgeons and Age UK 4, Breast Cancer Care 5 and Macmillan Cancer Support 6. The All Party Parliamentary Groups on Cancer and Breast Cancer have also made recommendations relating to the issue. Most recently the All Party Parliamentary Group on Breast Cancer noted that 7 : Older people are increasingly able to tolerate cancer treatments which would have been deemed too aggressive in the past, and research has shown that age alone is not a good predictor of how a patient will tolerate cancer treatment. There is evidence that many older patients are willing to accept the toxicity associated with cancer treatment if it increases their chance of survival. 3.12 The Group recommended that work should be undertaken to support the better use of data to establish the most appropriate treatment for older people with breast cancer. This report, which was commissioned as part of the implementation programme for the Government s cancer strategy, represents part of the NCEI and NCIN s contribution to achieving this. 3.13 In responding to stakeholder concern about the treatment of older people with cancer, the NCEI has already partnered with the Pharmaceutical Oncology Initiative (POI) to investigate the extent to which age is a factor in treatment decisions. The POI is a group of pharmaceutical companies, all members of the Association of the British Pharmaceutical Industry, which have joined together to work with the NHS to improve access to cancer medicines across the UK. The purpose of this partnership is to better understand treatment patterns for older people, as well as the factors which may influence these. 3.14 The results, published in The impact of patient age on clinical decisionmaking in oncology, suggest that clinicians may over rely on chronological age as a proxy for other factors which are often but not necessarily associated with age, such as comorbidities or frailty. Paradoxically, this finding is in contrast to the stated views of clinicians which are that factors such as comorbidity or frailty are more important than age itself 8. 16

3.15 The impact of age on clinical decision-making in the study is set out in Box 1 below. Box 1: Impact of healthy ageing on treatment intensity Analysis of the findings from the patient scenarios used in The impact of patient age on clinical decision-making in oncology suggests that the likelihood of a patient with advanced cancer receiving more intense cancer treatment reduces by a similar amount in the following two scenarios: The patient changes from someone in their 70s with good social support and no comorbidities to a patient in their 80s with the same characteristics (reduction of 28%) The patient changes from someone in their 70s with good social support and no comorbidities to a patient of the same age and social support but with severe comorbidity which affects their everyday life (reduction of 13%) Therefore ten years of healthy ageing has more impact on clinical decision-making than having severe co-morbidities at a younger age. The report can be accessed here. 3.16 It is important to note that a similar pattern was observed across different countries, suggesting that a concerted international effort is required to support clinicians in ensuring that the individual characteristics of each patient are considered in making recommendations about appropriate treatment. The international dimension of this issue has been supported by a study of the treatment provided to older veterans diagnosed with lung cancer in America. This concluded that older age is a much stronger negative predictor of treatment receipt amongst veterans with lung cancer than comorbidity 9. 17

3.17 The report identified a range of actions which different stakeholders might wish to consider, as set out in Box 2 below. Box 2: Potential actions identified in The impact of patient age on clinical decision-making in oncology Professional bodies should consider developing guidelines to support clinicians in offering appropriate treatment to older patients, based on a thorough assessment of their clinical characteristics Geriatricians should consider the ways in which they could support cancer clinicians in delivering the most appropriate treatment to older people Data on clinical practice including national clinical audits and datasets on surgery, radiotherapy and chemotherapy should wherever possible be published in such a way to enable analysis by age, building on the work undertaken to date by the NCIN Those hospitals that already have high quality information on chemotherapy usage, as a result of adopting e-prescribing systems, may wish to work together to examine the age profile of their chemotherapy patients Guidance on the quality of cancer services should reflect the needs of older people and the fact that active treatment rates for older patients can be a marker of wider quality Information should be provided to commissioners of cancer services in assessing the extent to which older cancer patients are being offered appropriate treatment, including publishing data on treatment rate and modality by age Providers of cancer services should consider taking steps to ensure they are offering appropriate treatment to their patients and supporting informed decision making, including the application of multi-disciplinary team (MDT) equity audits Commissioners and providers of cancer services should consider working together to improve the quality and consistency of the information on side effects of treatment which is provided to older patients as part of their efforts to improve outcomes in Domain 5 of the NHS Outcomes Framework ( Treating and caring for people in a safe environment and protecting them from avoidable harm ) A systematic review of the evidence on the efficacy and tolerability of cancer treatment in the over 70s should be conducted. The pharmaceutical industry and other medical researchers should also consider what more can be done to publish evidence on treatment efficacy and side effects in older people Given that lack of clinical trial data supporting treatment choices for older people was cited by 80% of respondents as the second highest ranking challenge of treating older people, the National Cancer Research Network (NCRN) should consider working with the principal investigators of large scale clinical trials to assess whether or not the demographics of trial participation is representative of the demographics of the wider population of people affected by cancer Cancer charities should consider the case for developing tailored information aimed at supporting older people who are either considering or undergoing treatment 18

3.18 This report marks part of the NCEI and POI s joint contribution to taking forward these actions. It provides the first comprehensive analysis of the use of chemotherapy in different age groups in England. 3.19 In addition, the NCEI and POI have commissioned the Liverpool Reviews and Implementation Group (LRIG) to conduct a literature review on the evidence base for the use of chemotherapy in older people. The aim of this is to review systematically evidence for the clinical effectiveness and tolerability of chemotherapy regimens used to treat cancer in older people with breast, colorectal, lung, renal cell, chronic myeloid leukaemia or non-hodgkin s lymphoma. For each of these cancers the group will: Systematically review and summarise the relevant evidence related to clinical effectiveness and tolerability to treatment Explore the implications of these findings for practice and service provision in order to disseminate accessible information to clinicians Inform future decisions on research priorities through the identification of gaps and weaknesses in the available evidence 3.20 The research community has already begun to take forward action to ensure that older people are included in future large scale clinical trials, addressing the disparity between median age of trial participants and wider patient populations. In metastatic bowel cancer, for example, the median age of patients in trials of palliative chemotherapy is typically 63 years, which is about 10 years younger than the median age in the population estimated from cancer registry data. In advanced stomach cancer, the difference is around 10-15 years. These disparities arise despite there being no formal upper age limit for trial entry, and reflect in part the reluctance of oncologists to offer full-dose trial treatments to older (and especially frail older) patients. 19

Box 3: Recent example of trials designed to include older people Several recent trials have specifically targeted older people by offering lowerintensity treatment arms: The FOCUS-2 advanced bowel cancer trial showed that with an appropriate design, including reduced starting doses of chemotherapy, frail older patients can participate in a randomised controlled trial. It also piloted the use of an objective geriatric assessment to help predict whether chemotherapy will have, on balance, favourable or adverse outcomes The recent AVEX trial successfully recruited patients over 70 years, using reduced-intensity treatments. Building upon these experiences, a new trial for frailer patients with advanced gastric or oesophageal cancer, GO2, is now underway. Patients with advanced cancer considered unfit for full-dose, three-drug chemotherapy will undergo a Comprehensive Health Assessment (CHA) and then receive a twodrug regimen randomly allocated to one of three dose intensities with the aim of establishing the best dose for patients at different levels of fitness. This trial will also have an optional randomisation to chemotherapy or best supportive care alone for patients where chemotherapy may be of uncertain value. 20

4. Project methodology 4.1 In the past it has been difficult to assess patterns of cancer drug delivery in England as data on usage and outcomes has not been routinely or systematically collected. Instead the Department of Health has had to rely on information supplied by manufacturers or companies such as IMS Health. Although this information has been useful in terms of assessing overall volume usage, it has been limited in that it is not accompanied by information about the characteristics of the patients who have received treatment or the outcomes achieved as a result of treatment. 4.2 In response to this weakness the Department of Health has worked with NHS England and the NCIN to develop SACT. Although it is early days for SACT and the level of submission of information is far from complete, the information produced already enables a level of scrutiny and analysis which was previously impossible. 4.3 SACT has the potential to provide unprecedented levels of detail and transparency on clinical practice in relation to chemotherapy delivery in England, including enabling: Assessments of the quality and safety of chemotherapy, as well as the outcomes delivered Identification of patterns of chemotherapy delivery Initiatives to expand access to appropriate medicines, including through monitoring the uptake of NICE guidance and administering patient access schemes Monitoring of equality issues, including variations in the characteristics of patients receiving treatment 4.4 This report presents the first thematic analysis of information from SACT. It is based on: Reports of 62,840 courses of chemotherapy delivered over a 13 month period Activity from 119 providers Intelligence on three common cancers Chemotherapy for both early stage cancer, where the treatment intent is curative, and advanced cancer, where the intent is disease modification, life extension and palliation 21

Number of treatment courses initiated 4.5 Figure 1 shows the patient data included in the study, according to cancer type. Figure 1: Patient data included in the study, by cancer type 35,000 30,000 25,000 20,000 15,000 10,000 5,000 0 Breast cancer Lung cancer Colorectal cancer 4.6 There are a range of different forms of systemic anti-cancer therapy, including cytotoxic, biological therapy, hormone therapy and immunological therapy. For the sake of consistency, any form of anticancer drug treatment is referred to as chemotherapy in this report. Where this report refers to a course of chemotherapy, this reflects data from the regimen field of the SACT data set. 4.7 Data from SACT were provided on treatment intent. Treatment intentions include neo-adjuvant (chemotherapy before surgery, usually designed to shrink tumours), adjuvant (chemotherapy after surgery, usually designed to prevent recurrence), curative (chemotherapy intended to eradicate the cancer) and palliative (treatment intended to slow or halt progression or alleviate symptoms). 4.8 For the purposes of analysis, these have been classified as treatment for: Early stage cancer ( neo-adjuvant, adjuvant and curative ) Advanced cancer ( palliative ) 4.9 When interpreting the data presented in this report, a number of caveats should be borne in mind, including: 22

The SACT programme is still in implementation phase, meaning providers are still establishing robust processes to capture and submit all data Not all providers of chemotherapy submitted data for the period of analysis (April 2012 April 2013 inclusive). It is estimated that 86% submitted data for this period Chemotherapy provided in a homecare setting is not always captured by the SACT programme The data only covers NHS activity, although private chemotherapy activity is unlikely to be a significant factor for older patients The reporting of participation in clinical trials is variable, although it is considered that fewer older patients are likely to receive treatment through trials 4.10 In addition, the SACT dataset significantly under-records the use of endocrine therapy, as this is often prescribed and dispensed in primary care and so not captured on hospital e-prescribing systems. As a result, all endocrine therapy (also known as hormones) has been excluded from this analysis. This is a common form of treatment for women with post-menopausal breast cancer and, as a result of its exclusion, overall levels of anti-cancer therapy amongst older women with breast cancer are likely to be significantly understated. 4.11 Although the data presented in this report represents the most comprehensive picture to date on the age profile of chemotherapy patients in England, information on treatment intent and the performance status of patients is far from complete. Nonetheless, the information on performance status of patients receiving chemotherapy is probably the most extensive in the world. 4.12 Figure 2 shows the recording of both stage of disease (derived from the recorded treatment intent) and performance status of patients. In terms of stage of disease, reporting is broadly consistent across cancer types and age groups, although it does increase with age for lung cancer. For performance status, it is notable that reporting for breast cancer declines significantly in older patients. This is of particular concern given the toxicities that can be associated with chemotherapy, which can be expected to have a particular impact on patients with poorer performance status. 23

Figure 2: Recording of stage of disease and performance status, by cancer type 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Stage of disease recorded - breast cancer Performance status recorded - breast cancer Stage of disease recorded - lung cancer Performance status recorded - lung cancer Stage of disease recorded - colorectal cancer Performance status recorded - colorectal cancer Note: early stage treatment is that described in the SACT data set as being neo-adjuvant, adjuvant or curative in intent. Advanced stage is that described as being palliative in intent. 4.13 If the potential of the SACT programme is to be realised in terms of evaluating clinical practice and outcomes, enabling commissioners to make decisions on the basis of quality and providers to account for their 24

performance, then it will be important that data submission is comprehensive. 4.14 In addition to the England-wide analysis, data are presented on patterns of activity for a number of selected providers. Given that the SACT programme has yet to reach maturity or complete submission, these providers have been anonymised. 4.15 Some of the numbers presented in this report relating to treatment stage or performance status differ slightly. This is because some patients may start multiple treatments with differing intent, often because their cancer recurs. In this case, it is possible that a patient s performance status may be recorded twice if it changes between treatments. An issue which is beyond the scope of this report, but which merits further investigation, is whether the number of lines of chemotherapy that patients receive varies according to the age of their diagnosis. 4.16 The report assesses volumes of patients given chemotherapy and the patterns that occur in delivery. It makes no assessment about the intensity of the treatment provided, the appropriateness or otherwise of treatment, or of the outcomes achieved as a result of it. No value assessment is made of the variations in patterns of treatment observed at either an England-wide or provider level. 4.17 It is hoped that, as the SACT dataset matures, further analyses will enable study of variations in the intensity of treatment as well as the quantity of courses of chemotherapy provided, as well as a discussion of the appropriateness of different approaches to clinical practice by enabling an assessment of the outcomes achieved. 25

5. Age profile of chemotherapy in England 5.1 As set out above, the SACT dataset enables analysis of the treatment received by very large numbers of patients. By comparing the numbers of patients receiving treatment with epidemiological data, it is possible to develop a picture of: Whether particular age groups are more or less likely to receive chemotherapy What the intent of the chemotherapy is for each age group How the performance status of patients receiving chemotherapy varies according to age and treatment intent 5.2 This chapter summarises the national picture for breast, colorectal and lung cancer patients. Breast cancer 5.3 Data on breast cancer patients receiving chemotherapy have been compared with the latest information on breast cancer incidence (for 2011). Although incidence is not an exact comparison as many patients will receive chemotherapy to treat recurrence of cancer many years after their initial diagnosis, it is considered to be a useful point of comparison. 5.4 Figure 3 shows that the pattern of provision of chemotherapy for breast cancer closely mirrors diagnoses until patients reach their mid-fifties. After this there is a divergence which becomes extremely marked by the time patients reach their seventies. There is a marked reduction in the likelihood of receiving chemotherapy from around the age of 65. 26

Figure 3: Diagnoses of breast cancer and courses of chemotherapy given to breast cancer patients, by age 6,000 5,000 4,000 3,000 2,000 1,000 0 New breast cancer registrations (ICD 10 code C50) Course of chemotherapy 5.5 Figure 4 and Figure 5 show the stage of cancer for which chemotherapy treatment was provided. It is clear that treatment for early stage cancer is the dominant form until patients reach their seventies, when the balance between early stage and advanced cancer is more even. This suggests that the reduction in early stage treatment which is intended to be curative in nature is a major reason for the overall decline in chemotherapy once people reach their seventies. 27

Figure 4: Absolute numbers of courses of chemotherapy for breast cancer by stage 3,500 3,000 2,500 2,000 1,500 1,000 500 0 Advanced stage Early stage Note: early stage treatment is that described in the SACT data set as being neo-adjuvant, adjuvant or curative in intent. Advanced stage is that described as being palliative in intent. 28

Figure 5: Proportion of courses of breast cancer chemotherapy by recorded stage 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Not recorded Palliative Curative* Note: early stage treatment is that described in the SACT data set as being neo-adjuvant, adjuvant or curative in intent. Advanced stage is that described as being palliative in intent. 5.6 It is important to acknowledge that there may well be good clinical reasons why older women are less likely to be given chemotherapy, including: Older people affected by breast cancer may be more likely to be prescribed hormonal or endocrine treatments to manage the risk of recurrence (these have been excluded from the study as capture in the SACT dataset is extremely patchy) The physical ability of older women to withstand chemotherapy may be less, meaning that more patients are not deemed eligible for treatment Older patients may choose not to proceed with chemotherapy treatment, having assessed the benefits and toxicities 5.7 However, it may also be that the clinical decision about whether or not to give chemotherapy is sometimes being determined by chronological age rather than performance status of the patient. 29

5.8 Figure 6 shows the performance status of breast cancer patients, when it as recorded in the SACT dataset. Although assessing performance status can be subjective, the SACT data show that the vast majority of patients had a good performance status (0 or 1) at all ages. However, by the time patients reach their seventies, overall performance status does decline, with less than 50% of patients receiving chemotherapy being recorded as asymptomatic. Figure 6: Performance status of breast cancer patients receiving chemotherapy, by age 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 4 - Bedbound 3 Symptomatic, >50% in bed, but not bedbound 2 Symptomatic, <50% in bed during the day 1 Symptomatic but completely ambulatory 0 - Asymptomatic 30

5.9 These findings do suggest that chemotherapy for breast cancer is predominantly given to people with a good quality of life and that this is the case for all age groups. The SACT data do not include the performance status of patients who were not treated with chemotherapy. This is an important gap in our knowledge because we cannot judge how many people with good performance status are not receiving chemotherapy. Colorectal cancer 5.10 As with breast cancer, data on diagnoses for 2011 has been compared with data on the number of patients receiving chemotherapy for colorectal cancer. Again, this is not an exact comparison, but is considered a useful proxy for health need. 5.11 Figure 7 shows that diagnoses and courses of chemotherapy closely mirror each other until patients reach their sixties, when a significant disparity emerges, which continues to grow for people over the age of seventy. As with breast cancer, there is a notable reduction in the likelihood of receiving chemotherapy from around the age of 65. 31

Figure 7: Diagnoses of colorectal cancer and courses of chemotherapy given to colorectal cancer patients, by age 6000 5000 4000 3000 2000 1000 0 New colorectal cancer registrations (ICD 10 codes C18-C20) Courses of chemotherapy 5.12 Figure 8 and Figure 9 show that there is more of a balance between early stage and advanced chemotherapy for colorectal cancer than there is for breast cancer, although early stage treatment constitutes the majority in all age groups up to seventy. For patients in their seventies and older, the spilt is broadly equal. 32

Figure 8: Absolute numbers of courses of chemotherapy for colorectal cancer by stage 2,500 2,000 1,500 1,000 500 0 Advanced stage Early stage Note: early stage treatment is that described in the SACT data set as being neo-adjuvant, adjuvant or curative in intent. Advanced stage is that described as being palliative in intent. 33

Figure 9: Proportion of courses of colorectal cancer chemotherapy by recorded stage 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% % not recorded % advanced stage % early stage Note: early stage treatment is that described in the SACT data set as being neo-adjuvant, adjuvant or curative in intent. Advanced stage is that described as being palliative in intent. 34

5.13 As with breast cancer, the performance status of the majority of patients receiving chemotherapy for colorectal cancer is good (0 or 1) for all ages, with some decline from the age of 70 onwards, as set out in Figure 10. Figure 10: Performance status of colorectal cancer patients receiving chemotherapy, by age 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 4 - Bedbound 3 Symptomatic, >50% in bed, but not bedbound 2 Symptomatic, <50% in bed during the day 1 Symptomatic but completely ambulatory 0 - Asymptomatic 35

Lung cancer 5.14 The progression of lung cancer as a disease unfortunately occurs more rapidly than it does for breast or colorectal cancer, with outcomes being significantly poorer. Therefore the number of deaths by age group has been compared with the number of patients receiving chemotherapy as it is considered a more realistic proxy for health need. 5.15 Figure 11 shows that, again, the pattern in provision of chemotherapy closely mirrors mortality until patients reach seventy, after which there is a sharp divergence. As with breast and colorectal cancer, there is a notable reduction in the likelihood of receiving chemotherapy from around the age of 65. The absolute number of courses of chemotherapy declines thereafter even though the number of deaths does not peak until the 75-79 age group. Figure 11: Deaths from lung cancer and courses of chemotherapy given to lung cancer patients, by age 6000 5000 4000 3000 2000 1000 0 Deaths from lung cancer Courses of chemotherapy 5.16 Figure 12 and Figure 13 show that unlike breast and colorectal cancer the vast majority of courses of chemotherapy are provided to lung cancer patients with advanced disease. This reflects both the use of chemotherapy in the lung cancer pathway and the fact that many lung cancers are not diagnosed until they are very advanced. 36

5.17 It is, nonetheless, notable that the proportion of lung cancer patients who are given chemotherapy with advanced disease increases with age. Figure 12: Absolute numbers of courses of chemotherapy for lung cancer by stage 3,000 2,500 2,000 1,500 1,000 500 0 Advanced stage Early stage Note: early stage treatment is that described in the SACT data set as being neo-adjuvant, adjuvant or curative in intent. Advanced stage is that described as being palliative in intent. 37

Figure 13: Proportion of courses of lung cancer chemotherapy by recorded stage 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% % not recorded % advanced stage % early stage Note: early stage treatment is that described in the SACT data set as being neo-adjuvant, adjuvant or curative in intent. Advanced stage is that described as being palliative in intent. 5.18 The performance status of the majority of lung cancer patients who receive chemotherapy is recorded as good (0 or 1). 38

Figure 14: Performance status of lung cancer patients receiving chemotherapy, by age 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 4 - Bedbound 3 Symptomatic, >50% in bed, but not bedbound 2 Symptomatic, <50% in bed during the day 1 Symptomatic but completely ambulatory 0 - Asymptomatic 39

6. Assessing the age profiles of chemotherapy patients in different trusts 6.1 As well as assessing overall patterns of chemotherapy delivery in England, the SACT programme enables us to analyse differences in delivery according to provider. This chapter profiles patterns of delivery from 12 providers. 6.2 The providers have been selected because they are considered to: Report activity for relatively large numbers of patients Supply relatively complete information Provide a good snapshot of chemotherapy activity in England 6.3 In total, the provider sample incorporates data from 21,780 patients, as set out in Table 1 below. Table 1: Patients included in provider sample Cancer type Number Advanced lung cancer 4,050 Early stage lung cancer 969 Advanced breast cancer 3,984 Early stage breast cancer 6,769 Advanced colorectal cancer 2,778 Early stage colorectal cancer 3,230 Total 21,780 6.4 Given the relatively early stage in the reporting of activity information to the SACT programme, the providers have been anonymised. However they encompass large cancer centres from a range of geographical locations in England. Breast cancer 6.5 For early stage breast cancer (Figure 15), the proportion of patients over the age of 65 varies from under 12% to 45% across the 12 providers analysed. 40

Figure 15: Age distribution for early stage breast cancer, by provider 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 75+ 65-74 50-64 20-49 Note: early stage treatment is that described in the SACT data set as being neo-adjuvant, adjuvant or curative in intent. Advanced stage is that described as being palliative in intent. Hospitals treating small numbers of patients or with data issues have been excluded. 6.6 For advanced breast cancer (Figure 16), the variation is even more striking, with the proportion of patients who are over the age of 65 ranging from 27% to just over 70%. 41

Figure 16: Age distribution for advanced breast cancer, by provider 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 75+ 65-74 50-64 20-49 Note: early stage treatment is that described in the SACT data set as being neo-adjuvant, adjuvant or curative in intent. Advanced stage is that described as being palliative in intent. Hospitals treating small numbers of patients or with data issues have been excluded. Colorectal cancer 6.7 For early stage colorectal cancer, the proportion of patients over the age of 65 ranges from 39% to over 70%, as set out in Figure 17. 42

Figure 17: Age distribution for early stage colorectal cancer, by provider 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 75+ 65-74 50-64 20-49 Note: early stage treatment is that described in the SACT data set as being neo-adjuvant, adjuvant or curative in intent. Advanced stage is that described as being palliative in intent. Hospitals treating small numbers of patients or with data issues have been excluded. 43

6.8 Figure 18 shows that, for advanced colorectal cancer, the proportion of patients over the age of 65 varies from just over 50% to nearly 68%. Figure 18: Age distribution for advanced colorectal cancer, by provider 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 75+ 65-74 50-64 20-49 Note: early stage treatment is that described in the SACT data set as being neo-adjuvant, adjuvant or curative in intent. Advanced stage is that described as being palliative in intent. Hospitals treating small numbers of patients or with data issues have been excluded. 44

Lung cancer 6.9 For early stage lung cancer, Figure 19 shows the proportion of patients over the age of 65 varies from 50% to just over 80%. Figure 19: Age distribution for early stage lung cancer, by provider 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 75+ 65-74 50-64 20-49 Note: early stage treatment is that described in the SACT data set as being neo-adjuvant, adjuvant or curative in intent. Advanced stage is that described as being palliative in intent. Hospitals treating small numbers of patients or with data issues have been excluded. 45

6.10 For advanced lung cancer patients, Figure 20 shows that the proportion of patients over 65 ranges from 56% to 68%. Figure 20: Age distribution for advanced lung cancer, by provider 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 75+ 65-74 50-64 20-49 Note: early stage treatment is that described in the SACT data set as being neo-adjuvant, adjuvant or curative in intent. Advanced stage is that described as being palliative in intent. Hospitals treating small numbers of patients or with data issues have been excluded. Variation between and within hospitals 6.11 As with the all-england analysis, variations in the age profile of chemotherapy delivery occur according to the type and stage of cancer. In the high resolution provider group the following patterns are observed: At younger ages a higher proportion of treatment is for early stage disease For breast cancer, a higher proportion of chemotherapy treatment occurs at a younger age than it does for other cancers 46

6.12 It is also clear that there is variation in the age distribution of chemotherapy patients between different providers. There may be good reasons for this variation, for example: Hospitals may serve populations with different age profiles Some hospitals may have a recognised expertise in the treatment of unusual cases (which may explain a higher proportion of comparatively young patients) or of patients with complex comorbidities (which may explain a higher proportion of older patients) Referral practices are complex and will differ according to geography Not all hospitals have submitted data on patients involved in clinical trials, so these patients may be under represented (although given the age profile of recruitment to trials, it is unlikely that older patients will be understated) 6.13 Data on the age profile, stage and performance status of those patients who did not receive chemotherapy would be required to draw definitive conclusions on variations in clinical practice. 6.14 However, given the marked differences observed and the reduction in treatment that occurs around the age of 65, it seems unlikely that these factors can explain the extent of the variation. 6.15 This suggests that at least some of the variation is unwarranted. Unwarranted variation occurs where access to treatment is not determined by the condition, the evidence base or patient choice but by the willingness or ability of the clinician to offer the treatment 10. At this stage, the SACT data cannot tell us how much of the variation is unwarranted, but in responding to the questions raised by these data, clinicians and commissioners will want to examine how their local services are delivered to assure themselves that treatment decisions are being based on holistic assessment of the patient and not just chronological age. 6.16 It is also notable that different teams within the same hospitals appear to have a different age distribution of chemotherapy patients. The reasons for these differences might include differences in cancer pathways and referral patterns, as well as different approaches to treating older people. These will require further investigation as complete SACT data becomes fully available for every provider. 47

7. Improving support for older people with cancer 7.1 Although further work is required to understand the reasons for and impact of the reduction in the use chemotherapy in older cancer patients, key themes can be identified. This chapter: Discusses key themes and learning from the SACT analysis Highlights the evidence for tailored interventions to support older people Sets out a series of actions which could be taken to improve the treatment and support provided to older people Key themes and learning from the SACT analysis 7.2 It is clear from the analysis presented in Chapter 5 that the proportion of patients given chemotherapy declines rapidly from the age of 65 for breast, colorectal and lung cancer, when compared with the overall burden of illness in those age groups. This supports the findings of previous studies which have suggested that older people are less likely to be prescribed chemotherapy, irrespective of other factors such as co-morbidities. 7.3 There appears to be a decline in the proportion of older patients who are given chemotherapy as part of treatment for early stage cancer. This may be because of alternative treatment options or it may be because clinicians believe that the harms of such treatment could outweigh the benefits. 7.4 The decline could also be because of some complex issues about patient choice and expectation. Staff involved in older persons cancer care pilots have reported that many older people underestimated their own life expectancy and often overestimated the side effects of treatment. Many patients are also not aware of the support services available to them. As a result, older people may be declining treatment without being given the relevant information to make an informed choice 11. 7.5 Chapter 6 shows that there are significant variations in the age profile of chemotherapy patients according to the hospital in which they are treated. It does not seem plausible that these could be explained by differences in the age profile of local populations alone. This is particularly the case because patterns of age do not appear to be the same for different cancer types within the same hospital, suggesting that the approaches of different clinical teams, as well as established hospital referral practices, may be a factor. 7.6 An analysis of recorded performance status suggests that most patients receiving chemotherapy, irrespective of their age, have a good performance status. Unfortunately no data exist on the performance status of patients who might have been eligible for chemotherapy but did not receive it, either as a result of a clinical decision or patient preference. An audit of the personal characteristics of such patients would be invaluable in assessing the appropriateness of clinical decision-making for older patients. 48

7.7 It is not the purpose of this study to assess whether or not the amount and nature of chemotherapy that is provided to older patients is appropriate, or indeed the extent to which the intensity of treatment varies according to age. Nor, at this stage, is it possible to assess the outcomes, both in terms of survival, quality of life and patient experience, achieved for older people who were given chemotherapy, or indeed those who were not. Both of these tasks should be possible as the SACT programme develops and improvements in wider cancer intelligence enable the linkage of different datasets. 7.8 Chemotherapy can play an important role in eradicating a patient s cancer, preventing it from returning, helping them live longer and improving their quality of life. However, it can also have negative consequences, causing side effects, damaging quality of life and short and long-term health, even contributing to early mortality. It is therefore important that decisions about treatment are carefully weighed and based on the best available evidence. 7.9 The SACT data do not yet allow us to answer the question as to whether older people are given less intensive treatment for clinically appropriate reasons or whether age is sometimes used as an inappropriate proxy for other factors, such as frailty or co-morbidities. This study does, however, identify patterns of variation that at least raise questions about the basis of treatment decisions. Clearly more detailed analysis is required of fuller data, but clinicians and commissioners will want to examine how their local services are delivered to assure themselves that treatment decisions are being based on holistic assessment of the patient and not on chronological age alone. Tailored interventions to support older people 7.10 A joint project between the Department of Health, Macmillan Cancer Support and Age UK tested the hypothesis that improved assessment methods of older cancer patients would result in improved access to appropriate cancer treatment. It also examined whether action to address the needs identified during the assessment could improve the scope for older people to benefit from treatment. The findings were published in Cancer Services Coming of Age: Learning from the Improving Cancer Treatment 12. 49

7.11 The report identified a series of principles which should underpin age-friendly cancer services, as set out in Box 4. Box 4: Key principles for age-friendly cancer services Engage elderly care specialists as an active part of the cancer care team and adopt a multidisciplinary approach to the assessment and management of all patients Ensure an early and appropriate assessment of an older person is undertaken. The assessment should not only inform a dialogue about cancer treatment, but should identify and address unmet physical, psychological and social support needs. Follow up assessments should be undertaken at defined points throughout the treatment journey, to identify and address changes in need Ensure everyone gets the maximum benefit from cancer treatment and associated supporting therapies by effectively managing other health conditions and incorporating reasonable adjustments into care planning to address additional needs Establish services and clear referral pathways for both outpatients and inpatients to address needs identified by assessment. This includes establishing clear links with voluntary sector agencies, social services, and specialist teams such as falls prevention teams, continence specialists and dementia specialists Ensure effective communication systems are in place to facilitate coordinated care and informed decision making Ensure all clinical and non-clinical staff are supported with the training and access to resources required to conduct appropriate assessment and follow up care of all patients. In order to do this, it is vital that systems allow sufficient clinic time to undertake this work in day-to-day practice The full report is available here. 7.12 Work undertaken in five pilot sites reaffirmed that many older people are relatively fit, with minimal support needs. Others have complex requirements, which if not addressed may present a barrier to cancer treatment. In striking a balance between undertreating and overtreating patients, effective assessment and care planning is vital. Such an approach can also help ensure that treatment approaches take into account a patient s own goals and preferences. 50

Actions to improve support for older people 7.13 It is important that cancer services constantly assess whether they are delivering the best possible treatment and care to the population they serve. Increasingly, this population will be older and so it will be necessary to reengineer services to meet the needs of older people. 7.14 A key challenge is to ensure that older people are diagnosed and referred at a stage when treatment of whatever modality can be most effective. Clinicians and charities have told us that low levels of awareness and late diagnosis are particular problems for older patients. It is therefore welcome news that Public Health England is to run a national campaign to raise awareness of breast cancer in women over the age of 70, following successful local and regional pilots 13. 7.15 Ensuring that older people are offered appropriate treatment is the responsibility of multiple stakeholders. There are a range of actions that different organisations should consider. 7.16 Providers should: Assess their own protocols and practices, considering whether patients may be inappropriately excluded from chemotherapy as a result of age being used as a proxy for other factors; or indeed whether patients have been given chemotherapy where this may have been inappropriate. A model for achieving this is through MDT equity audits where the team reflects on the treatment and care of particular groups of patients. National Cancer Peer Review asks teams whether they know how many patients by equality characteristic were diagnosed and/or treated in the previous year. Having good patient data makes it possible to reflect on practice Ensure prompt, accurate and comprehensive submission to the SACT dataset so that assessments of the outcomes achieved in the treatment of older people can be fully assessed and used to inform guidance on the issue Engage elderly care specialists in both the planning and delivery of cancer services for older patients, ensuring that pathways allow for and support an appropriate assessment prior to a treatment decision being made Take steps to ensure that staff are trained in the assessment of older people and are able to interpret, act on and communicate to relevant personnel the findings of these assessments Establish referral pathways to voluntary sector organisations who are able to offer practical support to older patients 51

7.17 NHS England, as the commissioner of chemotherapy services, should: Use the SACT programme to conduct regular equity audits of chemotherapy services as part of fulfilling its statutory duties to reduce inequalities and promote equality Further investigate providers who may be outliers in terms of clinical practice, particularly if there is a concern that patients may be being inappropriately denied treatment or, alternatively, given treatment which may be harmful to them Establish mortality patterns following chemotherapy as a key safety indicator for hospitals and publish data, disaggregated by equality group, on performance against this measure Encourage the assessment, recording and reporting of the performance status of cancer patients, irrespective of whether they go on to receive chemotherapy or indeed any other treatment Draw on evidence from the SACT dataset in developing protocols for prescribing and delivering chemotherapy to older people Work with clinical commissioning groups to develop the role of primary care professionals in supporting cancer patients both in contributing to multidisciplinary assessment of performance status and in ensuring that identified needs are documented in care plans and acted upon. Ensure that the capacity is available for providers to deliver enhanced support for older patients when this is necessary 7.18 The research community should: Take forward plans to increase the number of older people involved in trials, building on the models of good practice identified in The impact of patient age on clinical decision-making in oncology 14 Consider how more research can be conducted into options for people who might not otherwise have access to standard treatments, including frail older people or those with co-morbidities Publicise findings from this study about the good performance status of large numbers of older patients who receive chemotherapy and use this intelligence to redouble their efforts to involve older people in clinical research Continue to validate more streamlined assessment methods, ensuring they are sensitive enough to effectively identify any particular needs older people may have 52

Evaluate the cost-effectiveness and cost impact of efforts to improve the assessment of older people ahead of cancer treatment decisions being made Work with international partners such as the International Society for Geriatric Oncology (SIOG) to develop a consensus statement on the treatment of older people Develop proposals to gain insight into beliefs, perceptions, attitudes of older people that may influence choice of treatment 7.19 For its part, the NCEI will: Continue its partnership with the POI in publishing a literature review of the evidence relating to treating older people with modern cancer drugs Work with the NCIN to encourage the publication of accessible information on all aspects of the treatment and services offered to older people affected by cancer, including chemotherapy. Information should wherever possible include performance status and outcomes Repeat and extend this analysis in early 2015, examining treatment for more forms of cancer, including blood cancers, and conducting an atlas of variationstyle investigation into different age patterns for treatment Support commissioners and providers of cancer treatment in critically assessing the appropriateness of treatment for older people and identifying areas for improvement Provide leadership and support to NHS England and to CCGs, in reducing inequalities in cancer outcomes and promoting equality in all aspects of its work, including the commissioning of specialised services such as chemotherapy 7.20 Finally, this project reaffirms the potential of the SACT dataset to identify trends in clinical practice and inform action to improve the quality and consistency of services. It will be important to continue to invest in the SACT programme and to empower the team to work in partnership with others to identify and address issues, such as the treatment of older people, as part of wider efforts to improve cancer outcomes in England. 53

References 1 Cancer Research UK, Cancer mortality by age. Accessed 1 August 2013. Available here. 2 Department of Health, NHS Constitution for England, March 2013. Available here. 3 Moller H, et al. High cancer mortality rates in the elderly in the UK, Cancer Epidemiology (2011), DOI:10.1016/j.canep.2011.05.015. 4 Age UK & Royal College of Surgeons, Access all ages: Assessing the impact of age on access to surgical treatment, October 2012. Available here. 5 Breast Cancer Care, The outcomes and experiences of older women with breast cancer: driving progress in the new NHS, May 2013. Available here. 6 Macmillan Cancer Support, The Age Old Excuse: the under treatment of older cancer patients, March 2012. Available here. 7 All Party Parliamentary Group on Breast Cancer, Age is just a number: the report of the parliamentary inquiry into older age and breast cancer, July 2013. Available here. 8 Department of Health, The impact of patient age on clinical decision-making in oncology, February 2012. Available here. 9 Wang et al, impact of age and co-morbidity on Non-Small-Cell Lung Cancer Treatment in Older Veterans, Journal of Clinical Oncology, Vol 30 No 13, May 2012 10 Wennberg J, Tracking Medicine: A Researcher s Quest to Understand Health Care. Oxford University Press, 2010. 11 Age UK, Department of Health, Macmillan Cancer Support, Cancer services coming of age: learning from the Improving Cancer Treatment Assessment and Support for Older People Project, December 2012. Available here. 12 Age UK, Department of Health, Macmillan Cancer Support, Cancer services coming of age: learning from the Improving Cancer Treatment Assessment and Support for Older People Project, December 2012. Available here. 13 Public Health England, Be Clear on Cancer: next campaigns announced, September 2013. Available here. 14 Department of Health, The impact of patient age on clinical decision-making in oncology, February 2012. Available here. 54