National Audit of Cancer Diagnosis in Primary Care

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1 National Audit of Cancer Diagnosis in Primary Care Clinical Innovation and Research Centre 2011

2 National Audit of Cancer Diagnosis in Primary Care This report was prepared by: Royal College of General Practitioners: Greg Rubin, Professor of General Practice and Primary Care National Cancer Intelligence Network: Sean McPhail, Senior Analyst National Cancer Action Team: Kathy Elliott, National Lead for prevention, early diagnosis and inequalities Please note that the views expressed within this report are the authors own and do not necessarily reflect the view of the Department of Health or its policies in this area. Department of Health Gateway approval: Acknowledgements The introduction of a National Audit of Cancer Diagnosis in Primary Care was a vision shared by Professor Sir Mike Richards, Director of Cancer Services, and Professor Mayur Lakhani, Chairman of the Royal College of General Practitioners (RCGP) at the time of the publication of the Cancer Reform Strategy. It could not have been realised without the support of the RCGP and the National Cancer Action Team (NCAT). The Department of Health Cancer Policy Team and the National Cancer Intelligence Network (NCIN) have played critical roles in enabling this national report to be produced. Our thanks go to the many Cancer Networks that participated, for supporting practices as they completed the audit and collating data for the NCIN. Lastly, this audit would not have happened without the enthusiastic participation of the English general practice community. Together their efforts have produced a result that few thought could be achieved. ii

3 Acknowledgements ii Foreword 5 Executive summary 6 1. Introduction Background Diagnosis of cancer in primary care Audit of cancer diagnosis in primary care Previous audits of cancer care Aims of the audit 8 2 Audit methods Design of the audit Conduct of the audit in 2009/ Ethics and Information Governance Local and national analysis Data collection, cleaning and categorisation Stage Number of times patient attended surgery Investigations Ordered Symptoms at presentation Intervals along the patient pathway Statistical Methods of Analysis Tools 11 3 Participation and case ascertainment Participation Case ascertainment 12 4 Data Quality Data completeness Comparison to other data By cancer type By age and sex Commentary 15 5 Patient characteristics Demographic features Cancer site Commentary 18 6 Diagnostic pathway Place of presentation By cancer site Association with demographics GP consultations By cancer type Association with demographics 21 iii

4 6.3 Presenting symptom Use of Investigations Tumour type Association with presenting symptom Change in management Routes to diagnosis Demographic features Tumour type Presenting symptom Commentary 32 7 Intervals in the diagnostic pathway Patient interval Demographic features Tumour type Presenting symptoms Referral route Primary care interval Demographic features Tumour type Presenting symptom Referral route Referral interval Demographic features Tumour type Presenting symptom Referral route Commentary 44 8 Cancer stage at diagnosis Demographic factors Tumour type Presenting symptom Presentation route Commentary 50 9 Conclusions Suggestions for improvement 52 Appendix 1: Audit Steering Group 53 Appendix 2: Data Security and Data Transfer 54 Appendix 3: Notes accompanying audit template 57 Appendix 4: Participation 59 References 61 iv

5 Foreword I would like to thank all the General Practitioners and practice teams who have contributed to the collection of audit data that will help to shape our thoughts on the primary care diagnosis of cancer. The success around the methodology of this audit has been dependent not only on the excellent leadership shown by the project lead, Professor Greg Rubin and the steering group, but also the cancer network GP leads who have helped to facilitate the collection of the data presented in this report. The data show we do well in General Practice in identifying our patients who have cancer. There are, of course, groups of patients where we do have difficulty for various reasons in making a rapid diagnosis of cancer. Sometimes these are patient, practitioner or system factors. However, the foundations that will enable us to continue to provide a quality service are the attributes of quality General Practice - continuity of care; patient centredness and shared decision making; clinical acumen and sound diagnostic skills. We must also be prepared to evaluate what we do and this audit is an excellent example of how such evaluation can provide rich messages for the future care of our patients. Dr Clare Gerada, Chair of Council, RCGP 5

6 The National Awareness and Early Diagnosis Initiative (NAEDI) is intended to better understand and address the reasons for later diagnosis of cancer in England. An audit of cancer diagnosis in primary care was undertaken in 2009/10 as part of this initiative. An audit template was developed and piloted by an expert group of academic and service GPs, utilising experience in earlier local audits of cancer diagnosis. Information was collected on patient demographics and the nature of the assessment process in primary care, including the time taken from first presentation to referral. Participating cancer networks identified GP leads for the initiative, who also validated practice returns before acceptance. In addition to the local analyses undertaken by these networks, the data were collated into a single database by the NCIN. The collated data form the basis of this report. Data were collected on patients by 1170 practices in 20 cancer networks. Data quality was high with most categorical fields (including stage) being close to or over 90% complete. Comparison with cancer registry data demonstrated that the dataset was representative in respect of age, sex and distribution by cancer site. The duration of the primary care and referral intervals showed considerable variation by cancer site. Emergency presentation, usually associated with worse outcomes, occurred in 12.9% of all cases but ranged from 3.7% (breast) to 39.3% (brain). In 6.0% of cases the GP believed that better access to investigations would have reduced delay in diagnosis. This also varied considerably by site, being much greater for brain, ovary, pancreas and kidney. This is the largest and most comprehensive study to date of the primary care pathway to cancer diagnosis. It provides detailed insights into current clinical practice that can direct initiatives to reduce the time to diagnosis for cancer, as well as raising important questions for future research. It has raised awareness among GPs of their contribution to timely diagnosis of cancer and has stimulated professional and practice development. Many individual practices have expressed their intention to use the audit tool to regularly monitor their performance for the future. Networks have used their involvement as a springboard to wider engagement with primary care, taking advantage of the other quality improvement approaches that have been developed alongside this audit. We recommend: 1. That these findings could inform quality improvement initiatives that address the pathway to cancer diagnosis. 2. That the findings of this report are used to inform plans to improve access to diagnostics as outlined in Improving Outcomes: a Strategy for Cancer. 3. The Cancer Diagnosis Audit Tool could be a useful tool for practices, Cancer Networks and Clinical Commissioning Groups to identify local areas for improvement and to monitor the impact of service improvements. 4. That the audit of cancer diagnosis could be used systematically at a national level in order to monitor the impact on primary care outcomes of policy in the area of early diagnosis. 5. That primary care audit could be combined with other data, from secondary care audit or from the Association of Public Health Observatories Practice Profiles, for example, to generate more detailed understanding of factors influencing the pathway to diagnosis. 6

7 1.1 Background Diagnosis of cancer in primary care Over 90% of all patient contacts with health care in the UK occur in primary care. It is the setting in which symptoms are usually first evaluated and where those people who need further evaluation are identified and referred to specialist care. There are an estimated 300 million consultations in general practice in England annually, 1 and they represent a major challenge in the sifting of often undifferentiated symptoms in order to identify those patients with significant disease. For those patients with suspected cancer, clinical guidance for GPs was produced by Department of Health in 2000 and then revised by NICE in This provided information on symptoms and signs that merited urgent referral for further assessment. It was supported by a referral pathway for suspected cancer that would ensure patients were assessed within two weeks of referral. The Cancer Reform Strategy (2007) marked a new direction for improving cancer outcomes in England. A central theme was that of achieving earlier diagnosis, predicated on the belief that delay in the period leading up to diagnosis and subsequent treatment contributed significantly to the poor outcomes that were apparent from the EUROCARE studies. This emphasis on the importance of early diagnosis has been maintained in Improving Outcomes: a Strategy for Cancer (2011). A programme of activities spanning the cancer pathway from first suspicion of bodily change to confirmation of cancer diagnosis, the NAEDI, was launched in 2008 to better understand and address reasons for late diagnosis in England. One strand of the NAEDI work programme was a national audit of cancer diagnosis in primary care. This was intended to inform decisions about how best to provide more support to primary care professionals to ensure the earliest possible diagnosis of cancer and was to be undertaken in collaboration with the RCGP. Lessons from the audit could inform the education and training of GPs, including through continuous professional development and appraisal. The audit could also assist in the development of decision aids to support healthcare professionals in assessing symptoms and making decisions about further investigation or referral Audit of cancer diagnosis in primary care Audit is the review of clinical care, using objective measures, against explicit criteria for good clinical practice. There are no specific criteria that currently apply to primary care in respect of cancer diagnosis. The NICE referral guidelines for suspected cancer contain three suggestions for audit, all of which could present operational challenges. They relate to the provision of information about the likely diagnosis and the investigation or referral at first consultation of patients with classical features of cancer. Nevertheless, some groups have designed audits of cancer diagnosis in primary care Previous audits of cancer care National annual audits are well established for lung, colorectal, head and neck cancer and oesophago-gastric cancer. These have been managed by the NHS Information Centre. In all cases the audit has focussed on the secondary care pathway, for many aspects of which, criteria had previously been developed. The objective in each case has been to obtain data on all patients diagnosed with the cancer in question for a specified period and from as many participant specialist units as possible. After several rounds, high participation rates have been achieved. For example, 169/172 Hospital Trusts participated in the 2009 lung cancer audit and 94% of all cases presenting to secondary care were included. 3 Large scale audit of cancer diagnosis in primary care has previously been undertaken by the Scottish Primary Care Cancer Group 4 and in three English areas. These audits had primarily focussed on use of the two week 7

8 referral pathway but collected additional information about the diagnostic process. In Scotland, where two rounds of audit were completed, it was possible to discern some consequential changes, notably in relative use of referral pathways. The experience in these pilot sites provided valuable information about the feasibility of undertaking such an audit, participation and completion rates. 1.2 Aims of the audit The aim of this audit was to define current practice in primary care cancer diagnosis and to develop criteria for best practice, in order to improve future cancer outcomes. The objectives were to generate insights into the diagnostic pathway in general practice that could inform professional and practice development, as well as the commissioning process for services that support the cancer diagnosis pathway. Within cancer networks the findings were intended to stimulate clinical and service improvement and to provide a benchmark. This audit has important differences from the site-specific audits of secondary care practice that have been published. We chose to examine current practice for all cancers. To do this in all 8100 practices in England would have presented very considerable logistical and resource challenges. Instead, the ability of practices to participate depended on the priorities of Cancer Networks and the resources available to them. 8

9 2.1 Design of the audit The audit has been a collaboration between the following partners: Department of Health Cancer Policy Team National Cancer Action Team National Cancer Intelligence Network Clinical Innovation and Research Centre at the Royal College of General Practitioners. An audit development group was established to develop a model audit template, drawing on the experience of those involved in the Scottish audit and in the pilot audits in SE London, Manchester and Avon, Somerset and Wiltshire. The group comprised individuals responsible for these earlier audits, academic GPs active in cancer diagnosis, primary care leads from cancer networks and other stakeholders (Appendix 1). A model audit template was piloted by members of the development group before being made openly available. 5 A number of complementary actions were undertaken concurrently with this audit. These included a study of the interval from first presentation to diagnosis for 15 cancers, using the General Practice Research Database, large-scale significant event audit by general practices of their most recent cases of specified cancers 6, and the development of a support structure for this programme of activity within the RCGP. 2.2 Conduct of the audit in 2009/10 In 2009 the Department of Health announced a Local Awareness and Early Diagnosis Initiative (LAEDI), directed at the 28 Cancer Networks in England and led by NCAT. Cancer Networks were asked to develop local programmes of work which could include bringing together data to assess the needs related to early diagnosis of cancer; local strategies, governance and business cases; and implementation of evidence based awareness raising or primary care service change programmes. One option offered to networks as they formulated their LAEDI proposals was to participate in the Primary Care Cancer Audit. If this option was chosen, Networks were required to ensure that there was a GP Lead to provide clinical leadership for the audit. Participation in primary care cancer audit was included in 20 English Cancer Networks plans for a LAEDI and approved for funding from the NCAT and the Department of Health. Participating practices were required to complete the audit template from their practice clinical records and hospital correspondence. Participation was underpinned by a Local Enhanced Service agreement, which included the requirement that the practice team met and reviewed the completed audit prior to its submission. Networks identified audit leads whose responsibility it would be to support participating practices and to review their audit data for completeness. Additional technical support was provided by the Evaluation, Research and Development Unit (ERDU) at Durham University and by the SE London Cancer Network. Co-ordination of the overall initiative was undertaken by ERDU, on behalf of the RCGP Ethics and Information Governance Participating networks were required to gain local approval for this audit. No patient identifiable data were collected. All data submitted to the National Cancer Intelligence Network (NCIN) for analysis were held on the same IT system and under the same information governance arrangements as apply to cancer registries. 9

10 2.2.2 Local and national analysis A major purpose of the audit was to contribute to the development of local awareness and early diagnosis initiatives within the Cancer Networks of England during 2009/10. Participating networks undertook to analyse and report their local data. The National Cancer Action Team produced an overview report of this LAEDI programme and on the priorities for sharing learning in 2010/11, which included GP engagement. 7 The value of undertaking an analysis of combined data from participating networks was recognised from the outset, in terms of more robust understandings, particularly of less common pathways and rarer cancers. It also provides a benchmark against which local findings can be compared as well as an opportunity to set criteria for clinical care. 2.3 Data collection, cleaning and categorisation Returns from participating practices were aggregated at network level. With detailed guidance to networks from NCIN they were then submitted and imported into a single dataset for analysis by NCIN (Appendix 3) Stage Stage at diagnosis was simplified. We used a three stage grouping, based on the grouped staging which has previously been employed by cancer registries and which is described by SEER. Thus, stage was described as confined to organ, local (regional) spread, or distant (metastatic) spread. 8,9 These equate to SEER stages two to four, carcinoma in situ (stage one) being excluded from the audit. Stage was determined by the practitioner completing the template, based on information available in the practice records, including hospital correspondence Number of times patient attended surgery A lookup table was generated and different expressions of frequency of attendance were given a single numerical value (for example mapping 1, once and one to the numeric value 1). Values which failed to match were examined and the lookup table refined until for 95.6% of patients a numeric value for the number of times that the patient attended surgery prior to diagnosis was extracted Investigations Ordered Pattern matching was done within each free text item. For example, it was recorded that the GP ordered blood tests if any of the patterns bloods, b/t, PSA, or blood test (plus others) were contained in the data field. The resulting matches were examined without finding any that appeared inappropriately matched Symptoms at presentation Where multiple symptoms were listed, the first was taken as the primary symptom. Descriptions of symptoms were aggregated into cognate groups which naturally fitted the responses, by individual cancer type. For example breast lump and lump were grouped for breast cancer. These natural groups were then reviewed by a clinician and further aggregated along clinically relevant lines. 10

11 2.3.5 Intervals along the patient pathway The patient interval was defined as the date of onset of symptoms to the first consultation. The primary care interval was the date of first presentation to the date of referral. The referral interval was defined as the date of referral to the date the patient first attended for specialist assessment in secondary care. As well as the actual length of these intervals, they were categorised into those over 31 days, and those of 31 days and less. This cut off was considered to be the generally accepted time period within which GP assessment and referral should be completed. 2.4 Statistical Methods of Analysis Tools Data were imported and analysed within the Stata 11 software package. 11

12 3.1 Participation In total 20 Cancer Networks participated in the audit. Two networks invited practices from selected localities within their area, in both cases on the basis of socio-economic deprivation. In a third network five out of the seven PCTs exercised a selection process for practices wishing to participate. In the remaining networks all practices were invited to participate and no selection process was applied (Appendix 4). The audit was conducted between April 2009 and April Most networks applied a specified time frame for the selection of cases, which in most cases was 12 months. Participants were required to include all cases with a date of diagnosis within that period. However, one network applied a quota to the number of cases a practice was required to submit and in another, the practices were asked to focus on the four most common cancers (breast, bowel, lung, prostate). In total 1170 practices from 20 cancer networks participated. This represents 14% of all practices in England, drawn from nearly three-quarters of the 28 cancer networks. 3.2 Case ascertainment The audit only included confirmed malignancies. It excluded screen-detected cancers, in-situ carcinomas and non-melanotic carcinomas of the skin. 12

13 The completeness of data in the final audit is displayed in table For categorical fields the percentage of valid entries is shown, along with the percentage of responses that were Not known (or equivalent), where this was a possible response. For free text fields where validation is not easily possible the percentage of cases were the field had at least some text present is given. Most categorical fields had a completion with a valid response of close to or above 90%. Fields for which the response is conditional have a lower percentage completion, as might be expected. 4.1 Data completeness Field Valid Not known Complete Age 98.0% - - Gender 99.7% - - Ethnicity 98.3% 10.1% - Where is this patient's country of birth? 96.6% 22.6% - Does this patient have any problems communicating? 98.7% 1.3% - Is this patient housebound? 98.7% 2.4% - Diagnosis 99.6% 0.1% - Please enter further details of the diagnosis % What was the stage at diagnosis? 96.0% 7.4% - If known, enter date patient first noted symptoms or signs of cancer (dd/mm/yy) 74.3% - - Where did the patient first present? 98.4% 0.9% - Date patient reported symptom or sign to Primary Care (dd/mm/yy) 88.3% - - How many times did patient attend surgery before they were referred? % What was the main presenting symptom? % Did the GP organise any investigations before referring? 96.3% 1.4% - If yes, please list investigations ordered % Would rapid access to investigations have altered your management of this case? 91.5% - - If yes, which investigation would have been most useful? 6.2% - - Date Referral Sent (dd/mm/yy) 89.4% - - Which speciality was the referral sent to? % Type of referral 95.9% 2.5% - Which Trust was the patient referred to? % Date first seen or investigated by specialist (dd/mm/yy) 95.1% - - Were there any delays informing the practice of the diagnosis? 97.0% 2.2% - Were there any avoidable delays to this patient's journey? 95.6% - - If Yes or unsure, please comment % If patient deceased, enter Date of Death (dd/mm/yy) 16.9% - - Table 4.1-1, Data completeness by field. 13

14 4.2 Comparison to other data The dataset was comparable to that of the cancer registries in respect of age and sex, and by distribution by cancer site with some exceptions. Lung was under-represented in the audit, while prostate was over represented By cancer type 18% 16% 14% Audit Registry Fraction of cases 12% 10% 8% 6% 4% 2% 0% Bladder Brain Breast Cervical Colorectal Endometrial Gallbladder Laryngeal Leukaemia Liver Lung Lymphoma Melanoma Mesothelioma Myeloma Oesophageal Oropharyngeal Ovarian Pancreatic Prostate Renal Sarcoma Small Intestine Stomach Testicular Thyroid Vulval Other Unknown Primary No Information Figure 4.2-1, representation of cancers in the audit by cancer type, compared to those in cancer registry data. Data source: Office of National Statistics. 95% confidence intervals are shown for the proportion of cancers in the audit dataset By age and sex Fraction of cases 18% 16% 14% 12% 10% 8% 6% 4% 2% 0% Female Fraction of cases 18% 16% 14% 12% 10% 8% 6% 4% 2% 0% Male Audit Registry Figure 4.2-2, representation of cancers in the audit by age and sex, compared to those in cancer registry data. Breast cancer cases are excluded. Data source: Office of National Statistics. 14

15 4.3 Commentary There was very high data completeness, close to or in excess of 90% for nearly all categorical fields. The recording of dates in the patient pathway is also close to 90%, except for the date that the patient first noted signs or symptoms of cancer, which is close to 75%. The fraction of free text fields which were interpretable is high. For example, it is over 95% for the number of times attending surgery and main presenting symptom. 15

16 Patients included in this audit were typically aged over 65 years, men comprised 52% of the total, women 48% and 0.2% were unknown. A communication difficulty was recorded for 6.0% of the total, while 6.9% of all patients were housebound. 78% of those included were identified as White British. White other was the second largest identified ethnic group (3.2%) and 12% were unknown. We were not able to identify socio-economic status at the level of the individual, since this would have necessitated the collection of patient-identifiable data. 5.1 Demographic features Number of persons Male Female Figure 5.1-1, number of cases in the audit by age and sex. Age band 16,000 14,000 14,644 Number of persons 12,000 10,000 8,000 6,000 4,000 2, ,239 Ethnicity 16 Figure 5.1-2, number of cases in the audit by ethnicity.

17 18,000 16,876 16,000 14,000 Number of persons 12,000 10,000 8,000 6,000 4,000 2,000 1, Not housebound Housebound Not Known Figure 5.1-3, number of cases in the audit by housebound status. 20,000 18,000 17,252 16,000 Number of persons 14,000 12,000 10,000 8,000 6,000 4,000 2, Figure 5.1-4, number of cases in the audit by the presence of communication difficulties. 17

18 5.2 Cancer site Number of persons Bladder Brain Breast Cervical Colorectal Endometrial Gallbladder Laryngeal Leukaemia Liver Lung Lymphoma Melanoma Mesothelioma Myeloma Oesophageal Oropharyngeal Ovarian Pancreatic Prostate Renal Sarcoma Small Intestine Stomach Testicular Thyroid Vulval Other Unknown Primary No Information Figure 5.2-1, number of cases in the audit by cancer type. 5.3 Commentary Substantial numbers of cases were included for each cancer site, with over 2000 for each of the four main cancers. Even the very rare cancers (gallbladder, small intestine, vulva) were represented by over 50 cases, giving a unique opportunity to gain insights into their pathway to diagnosis. The demographic information collected is useful for understanding inequalities. The audit development group believed that some features had a particular potential to impact on the diagnostic process in primary care and are also commonly evident in the GP record. These included being housebound and having a communication difficulty. However, it was recognised by the group that these are not customary measures of inequality, and that those used by the National Cancer Equality Initiative are not all routinely recorded in GP records. There were over 1000 cases in each of our categories, enabling some conclusions to be drawn about the quality of care provided to them. 18

19 6.1 Place of presentation Most patients first presented to their GP with symptoms, though small numbers attended A&E or outpatients. There were some notable variations; a significant minority of those with brain, lung, stomach, and kidney cancer attended A&E in the first instance, the same being true for liver and thyroid cancers in respect of outpatient clinics. Over 10% of housebound patients attended A&E in the first instance with their symptoms By cancer site Practice Out patients A&E Walk-in centre Other Not Known Total n All persons 82.1% 4.1% 4.6% 0.7% 6.3% 2.3% 100% 920 Brain 66.7% 2.1% 20.1% 0.0% 7.7% 3.4% 100% 234 Breast 87.1% 2.7% 0.6% 0.1% 7.4% 2.2% 100% 3046 Cervical 88.2% 2.0% 1.3% 0.7% 5.3% 2.6% 100% 152 Colorectal 84.6% 3.4% 5.4% 0.3% 4.3% 1.9% 100% 2566 Endometrial 90.6% 1.4% 3.2% 0.2% 3.0% 1.6% 100% 435 Gallbladder 81.4% 5.7% 8.6% 0.0% 4.3% 0.0% 100% 70 Laryngeal 89.9% 3.9% 0.0% 0.8% 3.9% 1.6% 100% 129 Leukaemia 78.2% 6.3% 4.5% 0.3% 7.3% 3.3% 100% 574 Liver 69.2% 12.3% 5.4% 0.8% 8.5% 3.8% 100% 130 Lung 75.7% 4.8% 9.5% 0.1% 7.8% 2.0% 100% 2014 Lymphoma 82.9% 4.6% 5.0% 0.5% 4.5% 2.5% 100% 760 Melanoma 90.9% 3.6% 0.6% 0.0% 3.6% 1.3% 100% 878 Mesothelioma 87.3% 2.5% 6.3% 0.0% 3.8% 0.0% 100% 79 Myeloma 75.0% 7.1% 8.3% 0.0% 6.0% 3.6% 100% 252 Oesophageal 89.8% 2.7% 4.0% 0.0% 2.0% 1.5% 100% 596 Oropharyngeal 79.5% 4.8% 3.1% 0.4% 9.6% 2.6% 100% 229 Ovarian 84.8% 1.4% 7.8% 0.0% 4.7% 1.2% 100% 422 Pancreatic 85.9% 2.3% 6.4% 0.5% 3.6% 1.3% 100% 390 Prostate 86.3% 4.7% 2.1% 0.2% 4.5% 2.3% 100% 2912 Renal 71.4% 6.5% 10.1% 0.8% 9.3% 2.0% 100% 398 Sarcoma 79.8% 4.2% 3.4% 0.8% 9.2% 2.5% 100% 119 Small Intestine 82.5% 1.8% 5.3% 0.0% 8.8% 1.8% 100% 57 Stomach 79.6% 2.2% 10.7% 1.3% 4.1% 2.2% 100% 319 Testicular 83.7% 2.4% 3.6% 0.0% 7.8% 2.4% 100% 166 Thyroid 79.4% 10.3% 0.8% 0.8% 7.1% 1.6% 100% 126 Vulval 88.2% 2.6% 1.3% 0.0% 6.6% 1.3% 100% 76 Other 79.5% 4.6% 4.9% 0.2% 7.6% 3.2% 100% 567 Unknown Primary 81.5% 1.1% 11.1% 0.0% 4.2% 2.1% 100% 189 No Information 29.7% 4.1% 0.0% 0.0% 2.7% 63.5% 100% 74 Total 83.3% 3.9% 4.5% 0.3% 5.7% 2.4% 100% Table 6.1-1, place of first presentation by cancer type Association with demographics Sex Practice Out patients A&E Walk-in centre Other Not Known Total n Male 82.4% 4.6% 4.9% 0.3% 5.3% 2.3% 100% 9759 Female 84.3% 3.1% 4.0% 0.2% 6.1% 2.3% 100% 9066 Not Known 59.3% 1.9% 9.3% 0.0% 5.6% 24.1% 100% 54 Total 83.3% 3.9% 4.5% 0.3% 5.7% 2.4% 100% Table 6.1-2, place of first presentation by sex. 19

20 Males, by ageband Practice Out patients A&E Walk-in centre Other Not Known Total n % 2.8% 8.3% 1.9% 9.3% 4.6% 100% % 1.6% 1.6% 0.0% 6.3% 4.8% 100% % 3.2% 6.4% 1.1% 4.3% 3.2% 100% % 1.6% 6.2% 0.0% 3.9% 1.6% 100% % 3.6% 7.1% 0.0% 6.1% 2.0% 100% % 1.5% 6.6% 0.4% 5.5% 1.5% 100% % 2.9% 5.9% 0.7% 4.2% 2.6% 100% % 3.6% 3.7% 0.9% 5.3% 2.3% 100% % 4.8% 3.0% 0.4% 5.8% 2.4% 100% % 5.3% 3.8% 0.3% 5.0% 1.8% 100% % 4.8% 4.6% 0.2% 4.6% 1.3% 100% % 5.6% 4.1% 0.2% 4.4% 3.0% 100% % 5.8% 6.6% 0.3% 5.7% 3.1% 100% % 3.9% 7.3% 0.1% 7.8% 2.9% 100% 793 All males 82.5% 4.6% 4.8% 0.3% 5.3% 2.3% 100% 9,571 Table 6.1-3, place of first presentation by age band, for males. Females, by ageband Practice Out patients A&E Walk-in centre Other Not Known Total n % 1.1% 6.7% 3.3% 1.1% 5.6% 100% % 1.5% 4.6% 0.0% 4.6% 4.6% 100% % 1.8% 0.9% 0.0% 2.8% 0.9% 100% % 2.5% 2.1% 0.0% 5.3% 2.1% 100% % 1.2% 2.4% 0.0% 3.3% 2.4% 100% % 2.2% 1.9% 0.2% 2.7% 1.6% 100% % 3.2% 3.2% 0.0% 7.8% 1.9% 100% % 3.3% 2.3% 0.5% 7.0% 1.0% 100% % 3.3% 3.2% 0.1% 6.7% 2.9% 100% % 2.6% 3.0% 0.1% 7.5% 3.1% 100% % 4.1% 4.9% 0.1% 3.6% 1.8% 100% % 3.1% 4.9% 0.2% 4.6% 2.0% 100% % 3.9% 5.6% 0.1% 8.1% 2.7% 100% % 2.8% 6.7% 0.1% 10.3% 2.4% 100% 955 All females 84.3% 3.1% 4.0% 0.2% 6.2% 2.2% 100% 8889 Table 6.1-4, place of first presentation by age band, for females. Communication difficulty? Practice Out patients A&E Walk-in centre Other Not Known Total n None 84.3% 3.8% 4.3% 0.2% 5.4% 1.9% 100% Communication difficulty 74.0% 4.8% 6.9% 0.4% 10.4% 3.5% 100% 1142 Not known 69.1% 4.1% 4.9% 0.2% 5.8% 15.9% 100% 485 Total 83.3% 3.9% 4.5% 0.3% 5.7% 2.4% 100% Table 6.1-5, place of first presentation by presence of communication difficulty. Housebound? Practice Out patients A&E Walk-in centre Other Not Known Total n No 84.9% 3.9% 3.9% 0.3% 5.1% 1.9% 100% Yes 68.4% 3.9% 10.9% 0.2% 13.1% 3.5% 100% 1298 Not Known 71.5% 4.7% 6.5% 0.0% 6.0% 11.3% 100% 705 Total 83.3% 3.9% 4.5% 0.3% 5.7% 2.4% 100% Table 6.1-6, place of first presentation by housebound status. 20

21 6.2 GP consultations Concerns have been expressed about the number of times patients consult with symptoms of cancer before being referred for specialist assessment. 10 Participating practices were asked to count all consultations relating to the presenting problem that was associated with the patient s cancer. Most patients (66%) included in the audit consulted their GP one or two times before referral. However 4% consulted five or more times, and 9.5% did not consult at all. Those cancer sites where more than 20% of patients had three or more consultations included lung (including mesothelioma), lymphoma, myeloma, ovary, pancreas and stomach. This was also the case for males aged By cancer type Cancer type Not known Total n Bladder 9.0% 47.0% 22.6% 6.8% 2.1% 3.6% 8.9% 100% 920 Brain 14.1% 38.5% 16.2% 7.3% 3.8% 5.6% 14.5% 100% 234 Breast 11.7% 72.2% 5.3% 1.4% 0.6% 0.5% 8.4% 100% 3046 Cervical 5.9% 52.6% 17.8% 9.2% 3.3% 4.6% 6.6% 100% 152 Colorectal 9.1% 42.4% 22.5% 9.7% 3.7% 4.8% 7.8% 100% 2566 Endometrial 9.0% 61.8% 15.2% 6.0% 0.9% 1.4% 5.7% 100% 435 Gallbladder 7.1% 30.0% 22.9% 10.0% 4.3% 4.3% 21.4% 100% 70 Laryngeal 8.5% 41.9% 23.3% 12.4% 1.6% 3.9% 8.5% 100% 129 Leukaemia 9.8% 42.7% 20.0% 7.1% 3.7% 3.3% 13.4% 100% 574 Liver 13.1% 33.8% 19.2% 6.9% 4.6% 4.6% 17.7% 100% 130 Lung 11.3% 28.9% 24.1% 11.0% 6.2% 7.3% 11.1% 100% 2014 Lymphoma 8.4% 40.0% 21.2% 9.6% 4.2% 8.0% 8.6% 100% 760 Melanoma 7.9% 68.5% 13.1% 2.8% 0.7% 1.4% 5.7% 100% 878 Mesothelioma 10.1% 32.9% 26.6% 15.2% 2.5% 7.6% 5.1% 100% 79 Myeloma 6.7% 24.6% 20.2% 8.7% 9.9% 14.3% 15.5% 100% 252 Oesophageal 7.2% 44.6% 23.5% 10.9% 5.2% 3.2% 5.4% 100% 596 Oropharyngeal 8.7% 43.2% 20.5% 11.8% 2.6% 3.1% 10.0% 100% 229 Ovarian 9.7% 37.0% 22.5% 11.8% 4.7% 5.7% 8.5% 100% 422 Pancreatic 8.5% 32.6% 24.6% 10.5% 6.4% 9.2% 8.2% 100% 390 Prostate 6.8% 40.5% 30.6% 7.7% 2.7% 2.5% 9.1% 100% 2912 Renal 11.8% 35.2% 21.9% 8.3% 3.3% 5.3% 14.3% 100% 398 Sarcoma 9.2% 37.0% 23.5% 11.8% 4.2% 4.2% 10.1% 100% 119 Small Intestine 10.5% 36.8% 28.1% 7.0% 8.8% 3.5% 5.3% 100% 57 Stomach 8.8% 34.2% 19.1% 11.3% 6.3% 8.2% 12.2% 100% 319 Testicular 8.4% 60.8% 18.1% 3.6% 1.2% 0.0% 7.8% 100% 166 Thyroid 7.1% 43.7% 26.2% 5.6% 2.4% 0.8% 14.3% 100% 126 Vulval 7.9% 57.9% 15.8% 1.3% 1.3% 2.6% 13.2% 100% 76 Other 12.0% 43.4% 17.8% 7.6% 3.2% 3.7% 12.3% 100% 567 Unknown Primary 11.1% 31.2% 14.3% 13.2% 6.3% 13.2% 10.6% 100% 189 No Information 5.4% 8.1% 13.5% 2.7% 1.4% 1.4% 67.6% 100% 74 Total 9.4% 46.3% 20.0% 7.5% 3.2% 4.0% 9.5% 100% Table 6.2-1, number of attendances at GP by cancer type Association with demographics Sex Not known Total n Male 9.2% 41.8% 23.9% 8.2% 3.3% 4.1% 9.5% 100% 9759 Female 9.7% 51.2% 15.7% 6.8% 3.2% 3.9% 9.4% 100% 9066 Not Known 9.3% 42.6% 13.0% 0.0% 1.9% 5.6% 27.8% 100% 54 Total 9.4% 46.3% 20.0% 7.5% 3.2% 4.0% 9.5% 100% Table 6.2-2, number of attendances at GP by sex. 21

22 Males, by ageband Not known Total n % 50.9% 21.3% 5.6% 2.8% 3.7% 9.3% 100% % 52.4% 9.5% 12.7% 6.3% 3.2% 12.7% 100% % 46.8% 25.5% 8.5% 0.0% 1.1% 11.7% 100% % 49.6% 23.3% 7.8% 3.1% 3.1% 7.8% 100% % 48.7% 19.8% 8.1% 2.0% 1.5% 10.2% 100% % 45.6% 21.0% 7.7% 3.7% 4.4% 8.1% 100% % 39.6% 24.8% 9.2% 2.2% 4.0% 10.1% 100% % 43.7% 25.5% 7.9% 2.0% 3.9% 8.7% 100% % 42.5% 23.9% 8.7% 3.6% 3.6% 8.3% 100% % 39.8% 26.3% 9.1% 3.6% 3.7% 8.9% 100% % 41.3% 26.2% 7.5% 3.7% 4.4% 8.9% 100% % 42.6% 21.6% 8.1% 3.4% 5.2% 10.4% 100% % 38.6% 24.6% 7.1% 3.5% 4.5% 10.1% 100% % 41.1% 19.9% 10.1% 3.2% 3.9% 11.6% 100% 793 All males 9.1% 41.8% 23.9% 8.3% 3.3% 4.1% 9.5% 100% 9571 Table 6.2-3, number of attendances at GP by age band, for males. Females, by ageband Not known Total n % 36.7% 26.7% 11.1% 3.3% 4.4% 10.0% 100% % 52.3% 16.9% 6.2% 1.5% 7.7% 9.2% 100% % 51.4% 19.3% 8.3% 0.9% 2.8% 9.2% 100% % 58.8% 15.6% 6.2% 2.5% 5.3% 5.8% 100% % 61.3% 13.9% 5.2% 2.4% 2.4% 7.1% 100% % 61.4% 12.5% 6.9% 2.7% 2.4% 6.2% 100% % 56.5% 13.3% 4.4% 3.6% 3.4% 9.1% 100% % 54.2% 16.3% 6.1% 2.0% 3.5% 8.4% 100% % 50.3% 15.7% 6.3% 3.5% 4.5% 8.8% 100% % 49.4% 15.6% 6.9% 4.5% 4.7% 8.7% 100% % 47.2% 19.5% 6.8% 3.1% 4.1% 9.3% 100% % 47.0% 17.5% 8.1% 4.5% 4.3% 9.9% 100% % 51.7% 14.3% 6.7% 3.0% 3.9% 9.1% 100% % 45.3% 13.2% 7.7% 2.6% 3.8% 15.5% 100% 955 All females 9.8% 51.3% 15.7% 6.8% 3.2% 3.9% 9.4% 100% 8889 Table 6.2-4, number of attendances at GP by age band, for females. Communication difficulty Not known Total n None 9.3% 47.1% 20.2% 7.4% 3.3% 3.9% 8.8% 100% Communication difficulty 11.9% 40.5% 18.0% 8.0% 3.1% 4.9% 13.6% 100% 1142 Not known 9.7% 33.6% 14.6% 9.3% 3.3% 4.3% 25.2% 100% 485 Total 9.4% 46.3% 20.0% 7.5% 3.2% 4.0% 9.5% 100% Table 6.2-5, number of attendances at GP by presence of communication difficulty. Housebound? Not known Total n No 9.0% 47.7% 20.4% 7.5% 3.3% 3.9% 8.3% 100% Yes 13.6% 37.0% 15.6% 7.4% 3.2% 4.9% 18.4% 100% 1298 Not Known 12.1% 31.8% 16.6% 9.1% 3.0% 5.0% 22.6% 100% 705 Total 9.4% 46.3% 20.0% 7.5% 3.2% 4.0% 9.5% 100% Table 6.2-6, number of attendances at GP by housebound status. Ethnic category Not known Total n White British 9.1% 46.4% 20.1% 7.6% 3.3% 4.1% 9.3% 100% White other 11.7% 47.0% 20.0% 5.6% 3.0% 3.8% 9.0% 100% 837 Nonwhite 9.5% 46.2% 18.6% 8.7% 3.0% 3.9% 10.1% 100% 1159 Not Known 10.5% 45.9% 19.5% 6.8% 3.0% 3.5% 10.7% 100% 2239 Total 9.4% 46.3% 20.0% 7.5% 3.2% 4.0% 9.5% 100% Table 6.2-7, number of attendances at GP by ethnic category. 22

23 6.3 Presenting symptom Participants were asked to record the primary symptom with which the patient presented. The following tables contain data on the frequency of symptoms for the four most common cancers. Some inconsistencies exist in the completion of this field; for example, the meaning of asymptomatic probably mean that the cancer was an incidental finding but a raised PSA implies some pre-existing symptom that prompted this test to be done. Breast cancer Symptom % n asymptomatic 5.0% 152 breast abscess 0.3% 8 breast pain 4.4% 134 change to breast appearance 3.7% 114 change to nipple appearance 2.9% 87 fatigue 0.3% 8 lump in breast 74.0% 2254 neck pain 0.1% 2 nipple discharge 2.1% 63 not known 3.3% 100 other 3.6% 109 shortness of breath 0.3% 8 weight loss 0.2% 7 Total 100.0% 3046 Table 6.3-1, fraction of presentations by symptom group, for breast cancer. Colorectal cancer Symptom % n abdominal pain 14.8% 381 anaemia 9.0% 232 asymptomatic 3.0% 77 bowel obstruction 1.5% 38 change in bowel habit 26.4% 678 epigastric pain 0.4% 10 fatigue 4.6% 118 nausea 0.5% 13 not known 2.2% 56 other 6.6% 170 rectal hemorrhage 24.6% 632 rectal pain 1.2% 30 shortness of breath 1.8% 47 weight loss 3.3% 84 Total 100.0% 2566 Table 6.3-2, fraction of presentations by symptom group, for colorectal cancer. 23

24 Lung cancer Symptom % n abdominal pain 1.5% 30 asymptomatic 6.3% 126 chest infection 5.2% 104 chest pain 6.6% 132 chronic bronchitis, emphysema 2.0% 40 cough 25.2% 507 fatigue 6.5% 130 haemoptysis 7.4% 149 hoarse voice 1.3% 27 lymphadenopathy 1.3% 27 musculoskeletal pain 5.1% 102 not known 3.3% 67 other 8.7% 176 shortness of breath 15.0% 303 weight loss 4.7% 94 Total 100.0% 2014 Table 6.3-3, fraction of presentations by symptom group, for lung cancer. Prostate cancer 24 Symptom % n asymptomatic 6.9% 200 blood in the semen 0.5% 14 blood in the urine 5.5% 160 bone pain 1.4% 40 change in bowel habit 0.9% 26 enlargement of the prostate 8.4% 246 erectile dysfunction 1.7% 50 fatigue 1.6% 46 genitourinary tract pain 1.8% 51 incontinence 0.6% 18 lower urinary tract symptoms 32.0% 931 not known 3.1% 89 other 10.6% 309 painful urination 2.0% 59 raised psa 17.4% 508 urine retention 4.2% 121 weight loss 1.5% 44 Total 100.0% 2912 Table 6.3-4, fraction of presentations by symptom group, for prostate cancer.

25 6.4 Use of Investigations GPs often use diagnostic services to investigate suspected cancer. In some cases this is advocated as a first step by NICE guidance, as for some lung symptoms. In others they allow the risk of cancer as the underlying cause of symptoms to be clarified. Access to investigations varies widely by PCT and Improving Outcomes: a Strategy for Cancer (2011) contains a commitment to improve access to chest X-ray, non-obstetric ultrasound, GI endoscopy and brain MRI. In this audit we found that blood tests, chest X-ray and ultrasound examination were the most commonly used diagnostic tests. As might be expected, these varied according to cancer site, but also according to presenting symptom. Rapid access to investigations would have altered the GP s management of the patient in 6% of cases. Some cancer patients, however, were more likely to have benefited from better access to diagnostics. These included patients with brain, ovary, pancreas, liver and kidney cancer Tumour type All Breast Colorectal Lung Prostate Haematology Other Blood Test 33.1% 2.0% 41.5% 24.6% 74.0% 52.3% 24.4% CT 1.1% 0.2% 0.8% 4.0% 0.2% 0.7% 1.2% CXR 10.3% 1.7% 2.5% 61.0% 3.0% 14.8% 4.1% Endoscopy 1.1% 0.0% 3.5% 0.4% 0.1% 0.5% 1.4% MRI 0.2% 0.1% 0.0% 0.3% 0.2% 0.6% 0.3% USS 6.7% 0.5% 5.4% 2.2% 3.2% 6.1% 12.9% Table 6.4-1, fraction of cases of specified cancer type with an investigation ordered by the GP, by investigation type (i.e., 74.0% of prostate cancer patients have a blood test). Multiple investigations of different types in a single patient will be counted more than once Association with presenting symptom Breast cancer Symptom Chest X-ray Ultrasound MRI Blood test CT Endoscopy n asymptomatic 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% 152 breast abscess 0.0% 0.0% 0.0% 12.5% 0.0% 0.0% 8 breast pain 0.7% 0.0% 0.0% 2.2% 0.0% 0.0% 134 change to breast appearance 0.0% 1.8% 0.0% 3.5% 0.0% 0.0% 114 change to nipple appearance 1.1% 1.1% 0.0% 0.0% 0.0% 0.0% 87 fatigue 0.0% 0.0% 0.0% 25.0% 0.0% 0.0% 8 lump in breast 0.2% 0.1% 0.0% 0.6% 0.0% 0.0% 2254 neck pain 0.0% 0.0% 50.0% 0.0% 0.0% 0.0% 2 nipple discharge 0.0% 0.0% 0.0% 3.2% 0.0% 0.0% 63 not known 0.0% 0.0% 0.0% 2.0% 0.0% 0.0% 100 other 35.8% 8.3% 2.8% 27.5% 2.8% 0.0% 109 shortness of breath 50.0% 0.0% 0.0% 12.5% 12.5% 0.0% 8 weight loss 28.6% 14.3% 0.0% 42.9% 0.0% 0.0% 7 Total 1.7% 0.5% 0.1% 2.0% 0.2% 0.0% 3046 Table 6.4-2, percentage of cases presenting with symptom groups by type of investigation undertaken, for breast cancer. 25

26 Colorectal cancer Symptom Chest X-ray Ultrasound MRI Blood test CT Endoscopy n abdominal pain 2.1% 16.3% 0.0% 39.9% 1.3% 2.4% 381 anaemia 1.3% 2.2% 0.0% 64.2% 0.9% 4.7% 232 asymptomatic 1.3% 2.6% 0.0% 33.8% 1.3% 3.9% 77 bowel obstruction 2.6% 0.0% 0.0% 5.3% 0.0% 2.6% 38 change in bowel habit 1.3% 1.8% 0.0% 42.3% 1.0% 3.5% 678 epigastric pain 10.0% 20.0% 0.0% 60.0% 0.0% 10.0% 10 fatigue 5.1% 9.3% 0.0% 82.2% 0.8% 2.5% 118 nausea 7.7% 38.5% 0.0% 76.9% 0.0% 0.0% 13 not known 0.0% 0.0% 0.0% 8.9% 0.0% 1.8% 56 other 10.6% 12.4% 0.0% 43.5% 1.8% 2.9% 170 rectal hemorrhage 0.3% 0.9% 0.2% 26.4% 0.0% 4.7% 632 rectal pain 0.0% 6.7% 0.0% 20.0% 0.0% 0.0% 30 shortness of breath 19.1% 4.3% 0.0% 80.9% 0.0% 0.0% 47 weight loss 7.1% 10.7% 0.0% 57.1% 2.4% 1.2% 84 Total 2.5% 5.4% 0.0% 41.6% 0.8% 3.5% 2566 Table 6.4-3, percentage of cases presenting with symptom groups by type of investigation undertaken, for colorectal cancer. Lung cancer Symptom Chest X-ray Ultrasound MRI Blood test CT Endoscopy n abdominal pain 30.0% 23.3% 0.0% 50.0% 3.3% 0.0% 30 asymptomatic 14.3% 0.8% 0.0% 9.5% 0.8% 0.0% 126 chest infection 58.7% 1.0% 0.0% 12.5% 5.8% 0.0% 104 chest pain 60.6% 2.3% 1.5% 24.2% 6.1% 0.0% 132 chronic bronchitis, emphysema 40.0% 0.0% 0.0% 10.0% 2.5% 0.0% 40 cough 85.2% 0.2% 0.2% 21.1% 4.3% 0.4% 507 fatigue 32.3% 0.8% 0.8% 46.2% 3.1% 0.8% 130 haemoptysis 78.5% 0.0% 0.0% 11.4% 3.4% 0.0% 149 hoarse voice 48.1% 0.0% 0.0% 14.8% 0.0% 0.0% 27 lymphadenopathy 51.9% 14.8% 0.0% 55.6% 0.0% 0.0% 27 musculoskeletal pain 61.8% 4.9% 2.0% 34.3% 2.9% 1.0% 102 not known 13.4% 3.0% 0.0% 3.0% 0.0% 0.0% 67 other 30.1% 4.0% 0.0% 24.4% 5.7% 0.6% 176 shortness of breath 60.7% 1.0% 0.0% 19.5% 4.6% 0.3% 303 weight loss 69.1% 7.4% 0.0% 57.4% 4.3% 2.1% 94 Total 58.4% 2.1% 0.3% 23.4% 3.9% 0.4% 2014 Table 6.4-4, percentage of cases presenting with symptom groups by type of investigation undertaken, for lung cancer. Prostate cancer 26 Symptom Chest X-ray Ultrasound MRI Blood test CT Endoscopy n asymptomatic 0.5% 1.0% 0.0% 73.5% 0.0% 0.5% 200 blood in the semen 0.0% 7.1% 0.0% 71.4% 0.0% 0.0% 14 blood in the urine 0.0% 6.3% 0.0% 50.0% 0.0% 0.6% 160 bone pain 45.0% 0.0% 0.0% 67.5% 0.0% 0.0% 40 change in bowel habit 3.8% 7.7% 0.0% 88.5% 0.0% 0.0% 26 enlargement of the prostate glan 0.8% 3.3% 0.0% 87.4% 0.0% 0.0% 246 erectile dysfunction 0.0% 0.0% 0.0% 86.0% 0.0% 0.0% 50 fatigue 6.5% 4.3% 0.0% 76.1% 0.0% 0.0% 46 genitourinary tract pain 11.8% 17.6% 3.9% 78.4% 0.0% 0.0% 51 incontinence 0.0% 0.0% 0.0% 72.2% 0.0% 0.0% 18 lower urinary tract symptoms 0.4% 2.6% 0.0% 87.9% 0.0% 0.0% 931 not known 0.0% 0.0% 0.0% 22.5% 0.0% 0.0% 89 other 12.0% 5.5% 0.6% 74.1% 1.0% 0.3% 309 painful urination 0.0% 1.7% 0.0% 81.4% 0.0% 0.0% 59 raised psa 1.0% 2.2% 0.2% 66.9% 0.4% 0.0% 508 urine retention 0.0% 1.7% 0.0% 23.1% 0.0% 0.0% 121 weight loss 22.7% 9.1% 0.0% 90.9% 0.0% 0.0% 44 Total 3.0% 3.2% 0.2% 74.0% 0.2% 0.1% 2912 Table 6.4-5, percentage of cases presenting with symptom groups by type of investigation undertaken, for prostate cancer.

27 6.4.3 Change in management 30.0% 25.0% Fraction of all cases 20.0% 15.0% 10.0% 5.0% 0.0% Figure 6.4-1, percentage of cases in which access to investigation would have changed GP management, by cancer type. 95% confidence intervals are shown. 27

28 Investigation type for cases which would have changed management Cancer type Blood tests CT Endoscopy MRI USS XRay Not Known Total Bladder Brain Breast Cervical Colorectal Endometrial Gallbladder Laryngeal Leukaemia Liver Lung Lymphoma Melanoma Mesothelioma Myeloma Oesophageal Oropharyngeal Ovarian Pancreatic Prostate Renal Sarcoma Small Intestine Stomach Testicular Thyroid Vulval Other Unknown Primary No Information Total Table 6.4-6, investigation type for cases in which access to investigation would have changed management, by cancer type. All Breast Colorectal Lung Prostate Haemo Other Brain Blood tests 0.4% 0.0% 0.4% 0.1% 1.2% 0.7% 0.2% 0.0% CT 1.7% 0.2% 1.7% 3.2% 0.1% 2.1% 2.2% 9.4% X-Ray 1.3% 0.0% 5.0% 0.1% 0.1% 0.1% 1.6% 0.4% Endoscopy 0.5% 0.2% 0.1% 0.5% 0.3% 1.1% 0.8% 0.0% MRI 1.6% 0.8% 0.8% 0.1% 0.7% 1.1% 2.9% 9.8% USS 0.4% 0.4% 0.3% 2.3% 0.0% 0.1% 0.1% 0.0% Unknown 0.5% 0.5% 0.5% 0.4% 0.4% 0.6% 0.6% 0.4% Total 6.4% 2.2% 8.9% 6.9% 2.9% 5.7% 8.4% 20.1% Table 6.4-7, the investigations which would have changed management. The figures are the number of investigations for which management would have been changed with a denominator all cancers of that type by all cases, by cancer type. 6.5 Routes to diagnosis An urgent referral pathway for suspected cancer has now been in operation since 2000, with supporting criteria for referral being provided by NICE. Nevertheless, patients enter the secondary care system in other ways as well. Those being referred as an emergency are a particular concern because of the poorer outcomes that are associated with this route to diagnosis

29 Overall, over half of all cases were referred through the two week urgent referral pathway, while 12.9% were referred as an emergency. A proportion of these will have entered secondary care as an emergency without having been in contact with primary care. These are likely to also be patients with zero visits to the GP (Table 6.2.1). Emergency presentations were particularly high in the 0-24 age group, and for brain, leukaemia, liver, myeloma and pancreas. Two week referrals less likely for some cancers, notably being less than 40% of the total for brain, leukaemia, liver, and myeloma Demographic features Sex Emergency 2 week Routine Private Not referred by practice Not known Total n Male 13.1% 50.8% 17.1% 4.9% 7.3% 6.8% 100% 9759 Female 12.7% 57.3% 12.2% 5.0% 6.7% 6.1% 100% 9066 Not Known 13.0% 48.1% 14.8% 0.0% 1.9% 22.2% 100% 54 Total 12.9% 53.9% 14.8% 4.9% 7.0% 6.5% 100% Table 6.5-1, type of referral, by sex of patient. Males, by ageband Emergency 2 week Routine Private Not referred by practice Not known Total n % 25.0% 11.1% 2.8% 10.2% 11.1% 100% % 49.2% 17.5% 6.3% 6.3% 7.9% 100% % 42.6% 14.9% 4.3% 11.7% 6.4% 100% % 50.4% 18.6% 4.7% 3.9% 7.0% 100% % 48.2% 13.7% 7.1% 8.6% 7.1% 100% % 46.7% 19.1% 5.1% 7.4% 5.1% 100% % 48.4% 18.7% 7.3% 7.0% 7.3% 100% % 49.7% 16.8% 7.7% 7.3% 6.1% 100% % 51.4% 18.2% 6.1% 7.2% 5.9% 100% % 52.4% 19.4% 6.1% 5.9% 6.0% 100% % 54.0% 18.2% 3.6% 6.8% 5.9% 100% % 54.1% 16.3% 3.8% 7.5% 6.7% 100% % 47.9% 15.7% 3.3% 8.5% 8.8% 100% % 47.3% 13.7% 3.7% 8.6% 8.2% 100% 793 All males 13.1% 50.7% 17.2% 4.9% 7.3% 6.7% 100% 9571 Table 6.5-2, type of referral, by age band of patient, for males. Females, by ageband Emergency 2 week Routine Private Not referred by practice Not known Total n % 24.4% 14.4% 5.6% 4.4% 5.6% 100% % 50.8% 20.0% 1.5% 10.8% 9.2% 100% % 49.5% 24.8% 4.6% 3.7% 7.3% 100% % 53.1% 18.1% 7.4% 5.3% 6.2% 100% % 59.4% 11.8% 10.4% 6.1% 5.0% 100% % 62.6% 14.2% 6.4% 2.6% 4.2% 100% % 55.4% 15.1% 6.0% 7.0% 7.0% 100% % 59.8% 12.7% 6.2% 5.8% 5.6% 100% % 57.3% 11.0% 6.5% 7.0% 5.7% 100% % 57.6% 12.9% 5.1% 5.7% 6.4% 100% % 60.1% 12.2% 3.3% 6.9% 5.4% 100% % 60.1% 10.7% 3.0% 7.7% 5.5% 100% % 56.1% 9.5% 3.5% 8.7% 6.4% 100% % 53.0% 10.5% 3.5% 7.7% 8.3% 100% 955 All females 12.7% 57.4% 12.2% 5.0% 6.6% 6.1% 100% 8889 Table 6.5-3, type of referral, by age band of patient, for females. Communication difficulty Emergency 2 week Routine Private Not referred by practice Not known Total n None 12.6% 54.5% 14.9% 5.1% 6.8% 6.0% 100% Communication difficulty 17.1% 48.7% 13.3% 2.4% 9.6% 8.9% 100% 1142 Not known 11.5% 44.5% 12.2% 3.9% 7.2% 20.6% 100% 485 Total 12.9% 53.9% 14.8% 4.9% 7.0% 6.5% 100% Table 6.5-4, type of referral, by presence of communication difficulty. 29

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