Download Surveillance, Epidemiology and End Results (SEER) Program

Surveillance, Epidemiology
and End Results (SEER)
Program
NAS Committee on Analysis of
Cancer Risks in Populations
around Nuclear Facilities
May 23, 2011
Kevin Ward on behalf of:
Brenda K. Edwards
Surveillance Research Program,
NCI
SEER: Monitoring Progress in
Reducing the Cancer Burden
•
Longitudinal surveillance & clinical relevance
– All sites, common or rare
– All populations, by age, sex, race & ethnicity,
geography
– Evaluating the impact of public health interventions
•
Unusual cancer patterns
– Rapid changes in incidence
• Relevance to etiology
• Relevance to public health
Surveillance, Epidemiology and End Results
(SEER) Program
SEER: Monitoring Progress in
Reducing the Cancer Burden
• 18 Cancer Registries
– Collect incidence and survival data
– SEER Data Management System includes
SEER*DMS, SEER*Abs, SEER*Edits
• Annually report incidence, survival,
mortality (from NCHS), and prevalence
– Online data resources
– Public-use research file available online
– Data used in research: almost 7,000
publications in the SEER Bibliography
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SEER Data
• SEER Registries collect data on
• patient demographics
– age, sex, race & ethnicity, geography
– Ages that are grouped: <1, 1-4, 85+
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primary tumor site
tumor morphology/histology
stage at diagnosis
first course of treatment
follow-up for vital status
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9.5% of U.S. population 19732
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26% of U.S. population 20014
Greater Georgia
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Alaska Native Tumor Registry
Kentucky, Louisiana, New
Jersey, and the Remainder of
California
California--Los Angeles and
San Jose-Monterey
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Rural Georgia Region
CT, IA, UT and HI; and the Metro Areas of
Detroit and San Francisco-Oakland
Seattle-Puget Sound and
Metropolitan Atlanta
National Cancer Act of 1971
SEER Timeline and Database Groupings
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SEER Databases
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14% of U.S. population 19925
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5
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28% of U.S. population 20107
SEER Data Quality Profile
(DQP)
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All SEER registries
14 or more data quality markers
Annual assessment
Contractually required goals
SEER*Edits—a key to quality
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SEER*Edits
• Computerized edits that test the validity
of data fields-- executed each time a
user opens, validates, or saves a
record or patient set in SEER*DMS
• Includes registry-specific edits defined
and maintained by registry staff
• A patient set will not exit the workflow
until all edits are cleared
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SEER*Edits (cont’d)
n=610
• 205 Field Edits: Every data element is
checked for valid values
• 382 Inter-Field Edits: Compare data in one
field with other fields, e.g., sex and site
would not allow a male with ovarian
cancer
• 23 Inter-Record Edits: Compare
information between records for multiple
primaries, e.g. a person must have the
same race for all primaries
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SEER DQP Requirements
Data Quality Marker
1. Death Certificate only
2. Cause of death missing for patients known to
be dead
3. Unknown or ill-defined primary site
4. Non-specific histology
5. Unknown laterality
6. Unknown historic stage
7. Invalid or missing census tract
8. SEER estimated completeness
9. Percent Complete as of February 2009
10. 1 year reporting delay
11. Follow-up age < 20
12. Follow-up age 20-64
13. Follow-up age 65+
14. Follow-up all in situs
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Goal
< 1.5 % and > 0.0 %
< 2.5%
< 2.5%
< 2.5%
< 6.0%
< 10.0%
< 2.0%
> 98.0%
> 95.0%
< 2.5%
> 90*; > 80**
> 90*; > 80**
> 95*; > 90**
> 90*; > 80**
* Contractual standard
**Minimum acceptable
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Coding Changes
• Incidence data are collected based on the
International Classification of Diseases for
Oncology which is an expansion of the ICD
codes. There have been 3 revisions: ICD-O-3
• Site recodes for site/histology groupings that
have stayed fairly consistent over time.
• SEER also has a recode to eliminate cases from
trend analyses that haven't been collected
consistently over time.
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SEER Study Examples
• Kaposi’s sarcoma in San Francisco
• Estrogen and endometrial cancer
• Cancer incidence among immigrant
families
• ETS (environmental tobacco smoke) and
lung cancer (Surgeon General’s report)
• Patterns of Care/Quality of Care
• SEER-Medicare database
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NCI Studies of Radiation Exposure
• NCI Division of Cancer Epidemiology and
Genetics (DCEG)
– Radiation Epidemiology Branch
http://dceg.cancer.gov/reb
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Atomic Bomb Survivors
Chernobyl
Semipalatinsk Nuclear Test Site, Kazakhstan
Techa River, Nuclear Weapons Waste
• NCI fact sheet: “Accidents at Nuclear Power
Plants and Cancer Risk” provides links to
studies: http://www.cancer.gov/cancertopics/factsheet/Risk/nuclearpower-accidents
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SEER: Geographic Level of Data
• Registries collect state, county, zip code, and
address - they derive census tract.
• Registries transmit geocoded data to NCI SEER:
SEER registry, county, census tract, and census tract
certainty.
• Version of census tract is dependent on the year
of diagnosis, i.e., 1970, 1980, 1990, 2000, 2010.
• The census tract variables are removed from the
SEER public-use research file due to the
confidentiality concerns of small area analysis.
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SEER: Geographic Level of Data
• Identifiers are removed from SEER
analytic files
• Individual addresses must be
requested from the state registries
• Registry requirements may vary
– May require study protocol
– Will require IRB approval
– Time to receive data will vary
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State Registry Research Requirements
NAACCR website in development for
researcher information on accessing
data from U.S. and Canadian Registries
http://www.naaccr.org/Research/ResearchByRegistry.aspx
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SEER: Crossing State Lines
• Incidence: Based on residency in a SEER
geographic catchment area at time of diagnosis.
• Mortality: Linkage with the National Death
Index (NDI) captures out-of-state deaths.
• Registries have data-sharing agreements
with neighboring states & states with many parttime residents (eg., FL). Can cause reporting
delays and extra work to consolidate record.
• Issue for SEER: Incidence of multiple cancers,
if person moves to non-SEER state between
diagnoses of different cancers.
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SEER: Geocoding Accuracy
• In recognition of the increasing importance of geographic
data, NCI SEER is continuing to evaluate additional
metrics to assess accuracy.
• Separate quality standards are being tested for rural and
urban areas. A standard of at least 90% high quality
census tract certainty codes for urban areas and a
standard of at least 80% high quality census tract
certainty codes for rural areas.
• Before implementation, NCI SEER will evaluate the
definitions of “rural” and “urban.” Adjustment may be
needed to reflect the populations in SEER areas.
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SEER: 2010 Geocoding Accuracy
(2007 Data)
Urban
Rural
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Surveillance, Epidemiology and End Results Program
Case Ascertainment
National Center for Health Statistics
Demographics
U.S. Census Bureau
Population counts,
Bridged pops,
& County attributes
Mortality files
Stage, Histology, Treatment
Data
Survival
Reports
Multi‐tiered Data Collection
Case Records
Patterns of Care Studies
Data Quality Profile
18 SEER Registries
SEER*DMS
Cases in 2010 database: 6.1 million
Items in SEER bibliography: 6,934
•SEER*Stat
•SEER Public‐Use Research Files
•Online Statistical Fact Sheets
•Online Fast*Stats
•Data Documentation & Variable Recodes
•Rapid Response Special Studies
•State Cancer Profiles
•Annual Report to the Nation (With CDC, ACS, NAACCR, others)
•SEER Cancer Statistics Review
•US Cancer Statistics (with CDC)
•Cancer Facts & Figures (with ACS)
•Cancer in North America (with NAACCR)
•Cancer in Five Continents (with WHO/IARC)
•Cancer Trends Progress Report
•Monographs
Research Databases & Linkages
•SEER‐Medicare
•State Cancer Profiles
•National Longitudinal Mortality Study
•Residual Tissue Repository
Data Analysis Tools •SEER*Stat
•Joinpoint
•Delay Adjustment
•VA Case Adjustment
•CanSurv
•ComPrev
•HD*Calc
SEER
Manuals
SEER Online Training
Quality Studies: Web‐based Reliability, Case‐finding, etc.
National Surveillance Partners
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NCDB – Established 1989
• Hospital-based registries report data to the central registries.
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NAACCR – Established 1989
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Establishes & maintains a consensus on standards for cancer registration.
ACS
• Publishes Cancer Facts & Figures annually, based on registry data and NCI
methodology for prediction of cases.
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NPCR – Established 1992
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Collects cancer incidence data from 45 states, the District of Columbia, and
Puerto Rico; supports registry development in the U.S. Pacific Island
Jurisdictions.
NCHS
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Provides vital statistics, including U.S. mortality data for SEER reporting.
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National Surveillance Partners
• Collaborative activities
– “Annual Report to the Nation on the Status of
Cancer”
– US Cancer Statistics
– ACS Cancer Facts & Figures
– NAACCR Committees & CINA/CINA Deluxe
– State Cancer Profiles
– Coding System for Collaborative Stage
– SEER+ quality improvement studies
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Commentary
Annual Report to the Nation on the
Status Of Cancer, 1975-2007,
Featuring Tumors of the Brain and
Other Nervous System Cancers
Betsy A. Kohler, Elizabeth Ward, Bridget J. McCarthy, Maria J.
Schymura, Lynn A. G. Ries, Christie Eheman, Ahmedin Jemal,
Robert N. Anderson, Umed A. Ajani, and Brenda K. Edwards
Volume 103/Issue 3
April 20, 2011
Pages 1-23
Online print March 31, 2011
Lung cancer death rates
decreased in women for the first
time during 2003–2007, more than
a decade after decreasing in men.
During 2004–2007, more than 213
500 primary brain and ONS tumors
were diagnosed, and 35.8% were
malignant.
State Cancer Profiles
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