national cancer intelligence network data usage 17 november 2015 – veronique poirier – principal...

National Cancer Intelligence Network data usage

17 November 2015 – Veronique Poirier – Principal Cancer Analyst – NCIN

Overview• Data sources

• Data collection for brain tumours in England

• Incidence

• Mortality

• Life expectancy

• Routes to Diagnosis

• Prevalence

• Routes from Diagnosis

• Service Profiles CHI

2 National Cancer Intelligence Network data usage

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


National Cancer Intelligence Network data usage 4

Data Sources

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 https://www.cancertoolkit.co.uk/

• Fingertips, PHE http://fingertips.phe.org.uk/

• NCIN projects: Cancer by deprivation, Routes to Diagnosis, Macmillan-NCIN Partnership www.ncin.org.uk

• Macmillan Cancer Support, Routes from Diagnosis http://www.macmillan.org.uk/Aboutus/Ouresearchandevaluation/Programmesofwork/Routesfromdiagnosis.aspx

• Cancer Research UK: wide range of key statistics http://www.cancerresearchuk.org/cancer-info/cancerstats/types/brain/

https://www.cancertoolkit.co.uk/

https://www.cancertoolkit.co.uk/

http://fingertips.phe.org.uk/

http://fingertips.phe.org.uk/

http://www.ncin.org.uk/

http://www.macmillan.org.uk/Aboutus/Ouresearchandevaluation/Programmesofwork/Routesfromdiagnosis.aspx




http://www.cancerresearchuk.org/cancer-info/cancerstats/types/brain/



Access to data


https://nww.cancerstats.nhs.uk/users/sign_in

Cancer Outcome Service Dataset


https://nww.cancerstats.nhs.uk/users/sign_in


• 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

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

Eleanor Byrne

is

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

http://www.ncin.org.uk/collecting_and_using_data/data_collection/cosd

http://www.ncin.org.uk/about_ncin/understanding_the_cancer_population

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

2005 tumours – over 1 in 10 coded as Neoplasm NOS

Invasive Benign / Uncertain

Neoplasm NOS

Specific code

Brain and Central Nervous System ICD 10 codes

Cancer type ICD10 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



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

Age standardised incidence rate: Benign tumours of the Brain and CNS by sex in England, 2009-2013


Source: Cancerstat (D42 and 43)

Number of malignant and benign cases: Brain and CNS by Strategic Clinical Network by sex in England - 2013


Source: Cancerstat, (C70, 71and 72, and D42 and 43)

Age standardised incidence rate for males diagnosed with a Brain and CNS tumour by SCN in England, 2011-2013


Source: Cancerstat, C70-72


Source: Cancerstat, C70-72

Age standardised incidence rate for females diagnosed with a Brain and CNS tumour by SCN in England, 2011-2013

COSD Conformance Summary Level 32013 Diagnosis Counts - Invasive Brain and Central Nervous System


Total Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov DecSouth West 877 80 50 82 76 69 48 79 70 69 93 82 79Gloucestershire Hospitals NHS Foundation Trust (RTE) 59Great Western Hospitals NHS Foundation Trust (RN3) 19North Bristol NHS Trust (RVJ) 213Northern Devon Healthcare NHS Trust (RBZ) 12Plymouth Hospitals NHS Trust (RK9) 143Royal Cornwall Hospitals NHS Trust (REF) 39Royal Devon and Exeter NHS Foundation Trust (RH8) 46Royal United Hospital Bath NHS Trust (RD1) 44Salisbury NHS Foundation Trust (RNZ) 9South Devon Healthcare NHS Foundation Trust (RA9) 31Taunton and Somerset NHS Foundation Trust (RBA) 31University Hospitals Bristol NHS Foundation Trust (RA7) 207Weston Area Health NHS Trust (RA3) 7Yeovil District Hospital NHS Foundation Trust (RA4) 17

2013

Source: Cancerstat -COSD

Age standardised mortality rate: Malignant tumours of the Brain and CNS by sex in England, 2009-2013


Source: Cancerstat (C70 to 72)

Death Ratio male to female 1.3:1

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

Eleanor Byrne

not sure if this is mean to be here

Percentage of Glioblastoma among Astrocytoma (C70-72) by Strategic Clinical Network in England, 2009-2013


Source: National Cancer Registration Service

Glioblastoma in England - median life expectancy in months by regions 2007-2011


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: 2007 -2011. European Journal of Cancer (2015) 51, 533-542

Routes to diagnosis 2006-2013 data – England


Source: Routes to Diagnosis 2006-2013 workbook A http://www.ncin.org.uk/view?rid=3053

http://www.ncin.org.uk/view?rid=3053





Routes to diagnosis 2006-2013 data – England






Routes to diagnosis 2006-2013 data – England Relative survival 12 month





• 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 Diagnosiswhat is the CNS survivorship pathway?

Source: Macmillan Cancer Support, http://www.macmillan.org.uk/Aboutus/Ouresearchandevaluation/Programmesofwork/Routesfromdiagnosis.aspx Accessed February 2015


20-year cancer prevalence – Brain and CNS tumours in England, 1991 - 2010


Strategic Clinical Networks

0-1 yrs 1-2 yrs 2-5 yrs 5-10 yrs 10-15 yrs 15-20 yrs20 year

totalCheshire and Mersey 205 133 248 340 339 298 1,563

East of England 504 392 1,072 1,148 838 675 4,629

East Midlands 369 259 798 810 687 672 3,595

Greater Manchester Lancashire and South Cumbria 321 312 590 831 661 505 3,220

London 525 424 1,104 1,192 1,018 956 5,219

Northern of england 247 178 477 678 475 291 2,346

South East Coast 336 257 611 731 642 624 3,201

South West 433 310 1,027 995 719 756 4,240

Thames Valley 190 127 386 343 334 320 1,700

Wessex 283 192 581 615 491 508 2,670

West Midlands 458 236 659 1,019 757 604 3,733

Yorkshire and the Humber 381 311 716 973 775 762 3,918

Time Since Diagnosis

Source Macmillan-NCIN http://www.ncin.org.uk/about_ncin/understanding_the_cancer_population

Clinical Headline Indicators


Source: Cancerstat –CHI demo

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


Contact

Sarah Miller – Senior Cancer Analyst – lead analyst for Brain and CNS

[email protected]

Chair of CNS NCIN SSCRG: Professor Peter Collins

Next meeting/workshop dates have been provisionally set for :

4th and 5th February 2016

http://www.ncin.org.uk/cancer_type_and_topic_specific_work/cancer_type_specific_work/

central_nervous_system_cancers/


mailto:[email protected]




national cancer intelligence network data usage 17 november 2015 – veronique poirier – principal...

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