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

2. Overview Data sources Data collection for brain tumours in England Incidence Mortality Life expectancy Routes to Diagnosis Prevalence Routes from Diagnosis Service Profiles CHI 2National 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 3National Cancer Intelligence Network data usage

4. 4 Data Sources

5. 5National Cancer Intelligence Network data usage

6. Data Analysis 6National Cancer Intelligence Network data usage 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 https://www.cancertoolkit.co.uk/https://www.cancertoolkit.co.uk/ Fingertips, PHE http://fingertips.phe.org.uk/http://fingertips.phe.org.uk/ NCIN projects: Cancer by deprivation, Routes to Diagnosis, Macmillan- NCIN Partnership www.ncin.org.ukwww.ncin.org.uk Macmillan Cancer Support, Routes from Diagnosis http://www.macmillan.org.uk/Aboutus/Ouresearchandevaluation/Programme sofwork/Routesfromdiagnosis.aspx http://www.macmillan.org.uk/Aboutus/Ouresearchandevaluation/Programme sofwork/Routesfromdiagnosis.aspx Cancer Research UK: wide range of key statistics http://www.cancerresearchuk.org/cancer-info/cancerstats/types/brain/ http://www.cancerresearchuk.org/cancer-info/cancerstats/types/brain/

7. Access to data 7National Cancer Intelligence Network data usage https://nww.cancerstats.nhs.uk/users/sign_in

8. Cancer Outcome Service Dataset 8National Cancer Intelligence Network data usage https://nww.cancerstats.nhs.uk/users/sign_in

9. 9National Cancer Intelligence Network data usage 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 Brain tumour data collection

10. Weaknesses – non-invasive tumours 10 National Cancer Intelligence Network data usage 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

11. Weaknesses – brain metastases 11 National Cancer Intelligence Network data usage 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 COSD Progressive Cancers project by Macmillan and the National Cancer Intelligence Network, assessing second cancers, recurrence and metastases for selected cancer sitesProgressive Cancers project

12. Weaknesses – CNS bucket codes 12National Cancer Intelligence Network data usage 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 2005 tumours – over 1 in 10 coded as Neoplasm NOS InvasiveBenign / Uncertain Neoplasm NOS Specific code

13. Brain and Central Nervous System ICD 10 codes Cancer typeICD10 to be included Brain & Central Nervous System 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, D445 13National Cancer Intelligence Network data usage

14. 14National Cancer Intelligence Network data usage Age standardised incidence rate: Malignant tumours of the Brain and CNS by sex in England, 2009-2013. Source: Cancerstat (C70 to 72) Incidence ratio male to female 1.341660303

15. Age standardised incidence rate: Benign tumours of the Brain and CNS by sex in England, 2009-2013 15National Cancer Intelligence Network data usage Source: Cancerstat (D42 and 43)

16. Number of malignant and benign cases: Brain and CNS by Strategic Clinical Network by sex in England - 2013 16National Cancer Intelligence Network data usage Source: Cancerstat, (C70, 71and 72, and D42 and 43)

17. Age standardised incidence rate for males diagnosed with a Brain and CNS tumour by SCN in England, 2011-2013 17National Cancer Intelligence Network data usage Source: Cancerstat, C70-72

18. 18National Cancer Intelligence Network data usage Source: Cancerstat, C70-72 Age standardised incidence rate for females diagnosed with a Brain and CNS tumour by SCN in England, 2011-2013

19. COSD Conformance Summary Level 3 2013 Diagnosis Counts - Invasive Brain and Central Nervous System 19National Cancer Intelligence Network data usage Source: Cancerstat -COSD

20. Age standardised mortality rate: Malignant tumours of the Brain and CNS by sex in England, 2009-2013 20National Cancer Intelligence Network data usage Source: Cancerstat (C70 to 72) Death Ratio male to female 1.3:1

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 21National Cancer Intelligence Network data usage Source: National Cancer Registration Service Morphology codes for Glioblastoma : 9440/3,9441/3,9442/3

22. Percentage of Glioblastoma among Astrocytoma (C70- 72) by Strategic Clinical Network in England, 2009-2013 22National Cancer Intelligence Network data usage Source: National Cancer Registration Service

23. Glioblastoma in England - median life expectancy in months by regions 2007-2011 23National Cancer Intelligence Network data usage RegionsMaleFemalePersons North East8.2 (6.7 to 9.2)5.0 (4.2 to 6.0)6.7(5.7 to 7.9) North West6.0 (5.4 to 6.8)5.3 (4.7 to 5.9)5.7 (5.3 to 6.1) Yorkshire and the Humber6.9 (6.0 to 8.0)5.1 (4.3 to 6.1)6.1 (5.6 to 7.0) East Midlands5.9 (5.3 to 6.8)6.0(5.1 to 6.8)5.9 (5.4 to 6.6) West Midlands6.8 (6.1 to 7.6)5.9 (5.1 to 7.4)6.6 (5.9 to 7.3) East of England6.4 (5.6 to 7.0)5.2 (4.4 to 5.9)5.8 (5.3 to 6.4) London6.9 (6.0 to 8.0)6.2 (5.1 to 7.3)6.7 (5.9 to 7.3) South East5.9 (5.4 to 6.5)5.2 (4.7 to 5.8)5.7 (5.3 to 6.0) South West7.2 (6.3 to 8.1)6.4 (5.2 to 7.6)6.9 (6.2 to 7.7) England6.5 (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: 2007 -2011. European Journal of Cancer (2015) 51, 533-542

24. Routes to diagnosis 2006-2013 data – England 24National Cancer Intelligence Network data usage Source: Routes to Diagnosis 2006-2013 workbook ASource: Routes to Diagnosis 2006-2013 workbook A http://www.ncin.org.uk/view?rid=3053

25. 25National Cancer Intelligence Network data usage Source: Routes to Diagnosis 2006-2013 workbook ASource: Routes to Diagnosis 2006-2013 workbook A http://www.ncin.org.uk/view?rid=3053 Routes to diagnosis 2006-2013 data – England

26. 26National Cancer Intelligence Network data usage Source: Routes to Diagnosis 2006-2013 workbook ASource: Routes to Diagnosis 2006-2013 workbook A http://www.ncin.org.uk/view?rid=3053 Routes to diagnosis 2006-2013 data – England Relative survival 12 month

27. 27National Cancer Intelligence Network data usage 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 Routes from Diagnosis what is the CNS survivorship pathway ? Source: Macmillan Cancer Support, http://www.macmillan.org.uk/Aboutus/Ouresearchandevaluation/Programmesofwork/Routesfromdiagnosis.aspxhttp://www.macmillan.org.uk/Aboutus/Ouresearchandevaluation/Programmesofwork/Routesfromdiagnosis.aspx Accessed February 2015

28. 20-year cancer prevalence – Brain and CNS tumours in England, 1991 - 2010 28National Cancer Intelligence Network data usage Source Macmillan-NCIN http://www.ncin.org.uk/about_ncin/understanding_the_cancer_population

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

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 30National Cancer Intelligence Network data usage

31. Contact Sarah Miller – Senior Cancer Analyst – lead analyst for Brain and CNS sarah.miller@phe.gov.uk Chair of CNS NCIN SSCRG: Professor Peter Collins Next meeting/workshop dates have been provisionally set for : 4 th and 5 th February 2016 http://www.ncin.org.uk/cancer_type_and_topic_specific_work/cancer_type_specific_work/ central_nervous_system_cancers / 31National Cancer Intelligence Network data usage