National Cancer Intelligence Network data usage. 17 November 2015 Veronique Poirier Principal Cancer Analyst NCIN

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1 National Cancer Intelligence Network data usage 17 November 2015 Veronique Poirier Principal Cancer Analyst NCIN

2 Overview Cancer registration in England Data collection for brain tumours in England Incidence Mortality Survival Routes to Diagnosis Prevalence Service Profiles CHI 2 National Cancer Intelligence Network data usage

3 Strengths of the data Population-level cancer data covering the whole country Some countries only register a sample Population-based registration since 1960s Population registration reduces bias / positive sampling of cancer cases Centralisation of English cancer data ENCORE. Hosted by the National Cancer Registration Service at Public Health England 3 National Cancer Intelligence Network data usage

4 Data Sources 4 National Cancer Intelligence Network data usage

5 5 National Cancer Intelligence Network data usage

6 Data Analysis Cancer Analysis System CAS (incl: cancer registry data, SATC, RTD, WT) (restricted use) Cancerstat for NHS/PHE users (cancer incidence, mortality, survival, COSD and CHI) Cancer Commissioning Toolkit, NCIN Fingertips, PHE NCIN projects: Cancer by deprivation, Routes to Diagnosis, Macmillan- NCIN Partnership Macmillan Cancer Support, Routes from Diagnosis sofwork/routesfromdiagnosis.aspx Cancer Research UK: wide range of key statistics 6 National Cancer Intelligence Network data usage

7 Access to data 7 National Cancer Intelligence Network data usage

8 Cancer Outcome Service Dataset 8 National Cancer Intelligence Network data usage

9 Brain tumour data collection National Cancer Registration Service (NCRS) Public Health England ( ENCORE) Using the WHO International Classification of Diseases, version 10 (ICD- 10) ICD-10 codes grouped: (i) malignant (or invasive, or C-codes) (ii) benign and uncertain or unknown behaviour types (or non-invasive, or D-codes). Inconsistent historical collection of benign tumour data, improved from early 2000s WHO classification changes expected in 2016 will impact on the way some brain tumours are coded, details not yet confirmed 9 National Cancer Intelligence Network data usage

10 Weaknesses non-invasive tumours All brain tumours are a registrable condition National statistics have historically focused on invasive tumours When the data are not being used, it is hard to identify data quality issues One regional registry stopped submitting D32 (benign neoplasm of meninges) to ONS for over 10 years, and this wasn t spotted as no-one was analysing the data! Pituitary tumours: reported incidence rates strongly depend on: Amount of imaging being done, leading to incidental findings Access of cancer registries to imaging data better data, higher incidence rate 10 National Cancer Intelligence Network data usage

11 Weaknesses brain metastases Primary brain tumours only part of workload Metastases of other primary cancers to the brain are a significant proportion of all tumours in the brain National data on metastases historically poor site missing Reviewing the data we collect on recurrence and metastases now COSD data is being collected Progressive Cancers project by Macmillan and the National Cancer Intelligence Network, assessing second cancers, recurrence and metastases for selected cancer sites 11 National Cancer Intelligence Network data usage

12 Weaknesses CNS bucket codes Different brain cancers have very different care pathways and outcomes Cannot identify type of brain cancer without good morphological coding Historically, many brain cancers have been given bucket diagnoses Invasive Benign / Uncertain Neoplasm NOS Specific code 2005 tumours over 1 in 10 coded as Neoplasm NOS 12 National Cancer Intelligence Network data usage

13 Brain and Central Nervous System ICD 10 codes Cancer type Brain & Central Nervous System ICD10 to be included C700, C701, C709, C710, C711, C712, C713, C714, C715, C716, C717, C718, C719, C720, C721, C722, C723, C724, C725, C728, C729, C751, C752, C753, D320, D321, D329, D330, D331, D332, D333, D334, D337, D339, D352, D353, D354, D420, D421, D429, D430, D431, D432, D433, D434, D437, D439, D443, D444, D National Cancer Intelligence Network data usage

14 Age standardised incidence rate: Malignant tumours of the Brain and CNS by sex in England, Incidence ratio male to female 1.3 Source: Cancerstat (C70 to 72) 14 National Cancer Intelligence Network data usage

15 Age standardised incidence rate: Benign tumours of the Brain and CNS by sex in England, Source: Cancerstat (D42 and 43) 15 National Cancer Intelligence Network data usage

16 Number of malignant and benign cases: Brain and CNS by Strategic Clinical Network by sex in England Source: Cancerstat, (C70, 71and 72, and D42 and 43) 16 National Cancer Intelligence Network data usage

17 Age standardised incidence rate for males diagnosed with a Brain and CNS tumour by SCN in England, Source: Cancerstat, C National Cancer Intelligence Network data usage

18 Age standardised incidence rate for females diagnosed with a Brain and CNS tumour by SCN in England, Source: Cancerstat, C National Cancer Intelligence Network data usage

19 COSD Conformance Summary Level Diagnosis Counts - Invasive Brain and Central Nervous System 2013 Total Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec South West Gloucestershire Hospitals NHS Foundation Trust (RTE) 59 Great Western Hospitals NHS Foundation Trust (RN3) 19 North Bristol NHS Trust (RVJ) 213 Northern Devon Healthcare NHS Trust (RBZ) 12 Plymouth Hospitals NHS Trust (RK9) 143 Royal Cornwall Hospitals NHS Trust (REF) 39 Royal Devon and Exeter NHS Foundation Trust (RH8) 46 Royal United Hospital Bath NHS Trust (RD1) 44 Salisbury NHS Foundation Trust (RNZ) 9 South Devon Healthcare NHS Foundation Trust (RA9) 31 Taunton and Somerset NHS Foundation Trust (RBA) 31 University Hospitals Bristol NHS Foundation Trust (RA7) 207 Weston Area Health NHS Trust (RA3) 7 Yeovil District Hospital NHS Foundation Trust (RA4) 17 Source: Cancerstat -COSD 19 National Cancer Intelligence Network data usage

20 Age standardised mortality rate: Malignant tumours of the Brain and CNS by sex in England, Death Ratio male to female 1.3:1 Source: Cancerstat (C70 to 72) 20 National Cancer Intelligence Network data usage

21 Glioblastoma: Age specific incidence rate and number of cases Malignant tumours of the brain (C71) by age and sex in England, 2009 to 2013 Source: National Cancer Registration Service Morphology codes for Glioblastoma : 9440/3,9441/3,9442/3 21 National Cancer Intelligence Network data usage

22 Percentage of Glioblastoma among Astrocytoma (C70-72) by Strategic Clinical Network in England, Source: National Cancer Registration Service 22 National Cancer Intelligence Network data usage

23 Glioblastoma in England - median life expectancy in months by regions Regions Male Female Persons North East 8.2 (6.7 to 9.2) 5.0 (4.2 to 6.0) 6.7(5.7 to 7.9) North West 6.0 (5.4 to 6.8) 5.3 (4.7 to 5.9) 5.7 (5.3 to 6.1) Yorkshire and the Humber 6.9 (6.0 to 8.0) 5.1 (4.3 to 6.1) 6.1 (5.6 to 7.0) East Midlands 5.9 (5.3 to 6.8) 6.0(5.1 to 6.8) 5.9 (5.4 to 6.6) West Midlands 6.8 (6.1 to 7.6) 5.9 (5.1 to 7.4) 6.6 (5.9 to 7.3) East of England 6.4 (5.6 to 7.0) 5.2 (4.4 to 5.9) 5.8 (5.3 to 6.4) London 6.9 (6.0 to 8.0) 6.2 (5.1 to 7.3) 6.7 (5.9 to 7.3) South East 5.9 (5.4 to 6.5) 5.2 (4.7 to 5.8) 5.7 (5.3 to 6.0) South West 7.2 (6.3 to 8.1) 6.4 (5.2 to 7.6) 6.9 (6.2 to 7.7) England 6.5 (6.2 to 6.8) 5.6 (5.3 to 5.8) 6.1 (5.9 to 6.3) Source: Brodbelt A et al: Glioblastoma in England: European Journal of Cancer (2015) 51, National Cancer Intelligence Network data usage

24 Routes to diagnosis data England Source: Routes to Diagnosis workbook A 24 National Cancer Intelligence Network data usage

25 Routes to diagnosis data England Source: Routes to Diagnosis workbook A 25 National Cancer Intelligence Network data usage

26 Routes to diagnosis data England Relative survival 12 month Source: Routes to Diagnosis workbook A 26 National Cancer Intelligence Network data usage

27 Routes from Diagnosis what is the CNS survivorship pathway? Survivorship what are the pathways after diagnosis? Report focused on: glioblastoma, meningioma and nerve sheath tumours Patients with meningioma and nerve sheath tumours = notably better outcomes: Majority survive 7+ years (63.8% and 87.2% respectively) Group 7: major long-term health service demands Over half (55%) of cancer patients with glioblastoma tumours did not survive past 6 months Show similar short-term survival outcomes to lung cancer patients Source: Macmillan Cancer Support, Accessed February National Cancer Intelligence Network data usage

28 20-year cancer prevalence Brain and CNS tumours in England, Strategic Clinical Networks Time Since Diagnosis 0-1 yrs 1-2 yrs 2-5 yrs 5-10 yrs yrs yrs 20 year total Cheshire and Mersey ,563 East of England ,072 1, ,629 East Midlands ,595 Greater Manchester Lancashire and Sout ,220 London ,104 1,192 1, ,219 Northern of england ,346 South East Coast ,201 South West , ,240 Thames Valley ,700 Wessex ,670 West Midlands , ,733 Yorkshire and the Humber ,918 Source Macmillan-NCIN 28 National Cancer Intelligence Network data usage

29 Clinical Headline Indicators Source: Cancerstat CHI demo 29 National Cancer Intelligence Network data usage

30 Conclusions NCRS data is a good resource world leading data set understand and improve patient care across the country There are known weaknesses in the available cancer data. Important to consider during data analysis Recent developments - one English National Cancer Registration Service, COSD, SACT, Radiotherapy, DID 30 National Cancer Intelligence Network data usage

31 Contact Sarah Miller Senior Cancer Analyst lead analyst for Brain and CNS Chair of the NCIN Brain and CNS SSCRG: Professor Peter Collins Next meeting/workshop dates have been provisionally set for : 4 th and 5 th February central_nervous_system_cancers/ 31 National Cancer Intelligence Network data usage