national cancer intelligence network data usage 17 november 2015 – veronique poirier – principal...
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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
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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
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Data Sources
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Data Analysis
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• 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/
Access to data
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https://nww.cancerstats.nhs.uk/users/sign_in
Cancer Outcome Service Dataset
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https://nww.cancerstats.nhs.uk/users/sign_in
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• 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
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• 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
Weaknesses – brain metastases
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• 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
Weaknesses – CNS bucket codes
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• 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
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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
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Source: Cancerstat (D42 and 43)
Number of malignant and benign cases: Brain and CNS by Strategic Clinical Network by sex in England - 2013
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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
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Source: Cancerstat, C70-72
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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
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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
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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
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Source: National Cancer Registration Service
Morphology codes for Glioblastoma : 9440/3,9441/3,9442/3
Percentage of Glioblastoma among Astrocytoma (C70-72) by Strategic Clinical Network in England, 2009-2013
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Source: National Cancer Registration Service
Glioblastoma in England - median life expectancy in months by regions 2007-2011
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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
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Source: Routes to Diagnosis 2006-2013 workbook A http://www.ncin.org.uk/view?rid=3053
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Source: Routes to Diagnosis 2006-2013 workbook A http://www.ncin.org.uk/view?rid=3053
Routes to diagnosis 2006-2013 data – England
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Source: 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
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• 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
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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
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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
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Contact
Sarah Miller – Senior Cancer Analyst – lead analyst for Brain and CNS
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/
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