1. The Role of Death Certificates in the Standards of the National Program of Cancer Registries
Gayle Greer Clutter, R.T., CTR
Program Consultant
National Program of Cancer Registries
Robin D. Otto, RHIA, CTR Registry Manager Pennsylvania Cancer Registry
NAPHSIS 2006

2. Outline What NPCR is NPCR Standards
Why central cancer registries (CCRs) need Death Certificates
What death clearance is
What challenges CCRs have with death clearance
Objectives of this presentation are to let you know

3. National Cancer Registries Amendment Act
Passed by Congress October 24, 1992
Established of National Program of Cancer Registries (NPCR)
Provide funds to states and territories to enhance or plan and implement CCR’s
Set national standards for data completeness, timeliness, and quality
In 1992 Congress passed the National Cancer Registries Amendment Act which authorized CDC to award funds to states to enhance or implement population-based statewide central cancer registries. This law also authorized CDC to set national standards for completeness, timeliness, and quality for cancer data for funded programs.

4. Federally Funded Cancer Registries, 2005
Seattle/Puget Sound
Detroit CT IA
San Francisco/
Oakland NJ UT
San Jose/
Monterey CA KY
Los
Angeles NM
Atlanta LA
This map shows that there are now CCRs in all 50 states
NPCR includes 45 states, 3 territories, & DC (in green)
Represents 96% population
Remaining 5 state ca registries are funded through SEER. (In yellow)
Several states now have both NPCR & SEER funding (yellow with green lines)
HAWAII
NPCR * ` †
PUERTO
RICO
ALASKA
REPUBLIC
OF PALAU
SEER
*National Program of Cancer Registries (CDC)
†Surveillance, Epidemiology, and End Results Program (NCI)
VIRGIN ISLANDS
NPCR/SEER

5. NPCR Standards for Completeness
95% of the expected cases of reportable cancer occurring in a state’s residents in a diagnosis year will be reported to the CCR.
Completeness of information:
Unknown =
age <3%
sex <3%
race <5%
One NPCR standards relates to completeness of reporting .
This standard is that 95% of the expected cases of reportable cancer occurring in a state’s residents in a dx year should be reported.
A formula is used to compute the state’s completeness rate.
Another completeness standard is that within 24 months of the close of the dx year, the state has performed death clearance, & that 3% or fewer of cases in the database are reported by DCO.
Completeness standards have also been established for missing or unknown information in 3 key required data fields. They are that unknown
age must be 3% or less
sex must be 3% or less
race must be 5% or less

6. NPCR Standards for Timeliness
90% of unduplicated, expected, malignant cases within 12 months
95% of unduplicated, expected, malignant cases within 24 month
The NPCR standards for timeliness are that
within 12 months of the close of the dx year, 90% of expected, unduplicated cases will be available to be counted as incident cases at the CCR.
Within 24 months of the close of the dx year, 95% of expected cases will be available.

7. CCR Case Sharing NPCR Standard
Within 12 months of the close of the diagnosis year, the CCR exchanges data with other CCRs where a data-exchange agreement is in place.
Regardless of residency, the CCR collects data on all patients diagnosed and/or receiving first course of treatment in the registry’s state/territory.
The NPCR standards for timeliness are that
within 12 months of the close of the dx year, 90% of expected, unduplicated cases will be available to be counted as incident cases at the CCR.
Within 24 months of the close of the dx year, 95% of expected cases will be available.

8. Why CCRs Need Death Certificates
Death clearance is needed to meet additional NPCR Standards for completeness and timeliness:
Timeliness: The CCR performs death clearance and follow-back within 24 months of the close of the diagnosis year.
Completeness: 3% or fewer cases in the CCR database are reported by death certificate only.
The NPCR standards for timeliness are that
within 12 months of the close of the dx year, 90% of expected, unduplicated cases will be available to be counted as incident cases at the CCR.
Within 24 months of the close of the dx year, 95% of expected cases will be available.

9. Death Clearance (1)
Definition: The process of matching registered deaths in a population against registered cancers in a population for three purposes:
Ascertainment of vital status and other death-related information for persons in the CCR;
Identification of all deaths with cancer mentioned as a cause of death which are not found in the CCR.
Add missing or unknown data to CCR record. .

10. Death Clearance (2)
Term ‘death clearance’ established by the End Results Group
Predecessors of the Surveillance, Epidemiology End Results (SEER) program
Referred to the process of linking files to state or county mortality files for the purpose of clearing out all of the deaths before beginning follow-up
Ability to generate accurate survival statistics.
The term death clearance originally arose from the End Results Group, one of the predecessors of the SEER Program (Surveillance, Epidemiology End Results) and referred to the process of linking against state or county mortality files for the purpose of clearing out all of the deaths before beginning the follow up process and to be able to generate accurate survival statistics. When registries expanded to a population-base and the emphasis was on complete and accurate incidence as well as survival data, the death certificate follow back process was introduced to identify potential missed reports from non registered deaths. (JOHN YOUNG) The term death clearance has evolved to include both processes - updating vital status and identifying potential missed cases.

11. Death Clearance (3)
Population-based registries (CCRs) expanded the purpose to include enhancing completeness and accuracy of incidence, as well as survival data.
Ability to identify potential missed cases from cancer deaths of non-registered patients.
Updating vital status and other missing information.
The term death clearance originally arose from the End Results Group, one of the predecessors of the SEER Program (Surveillance, Epidemiology End Results) and referred to the process of linking against state or county mortality files for the purpose of clearing out all of the deaths before beginning the follow up process and to be able to generate accurate survival statistics. When registries expanded to a population-base and the emphasis was on complete and accurate incidence as well as survival data, the death certificate follow back process was introduced to identify potential missed reports from non registered deaths. (JOHN YOUNG) The term death clearance has evolved to include both processes - updating vital status and identifying potential missed cases.

12. Death Clearance Purpose (1)
Utilize information from death certificates to enhance cancer registration to:
Provide or update CCR death-related data items for matched records including:
Date of Death
Underlying Cause of Death
Death Certificate File Number
Vital Status
ICD Revision Number
State of Death

13. Death Clearance Purpose (2)
Incorporate appropriate information for other data items common to both cancer and death registration systems into the CCR data base to enhance data quality:
Name – last, first, middle, maiden
Social Security Number
Race
Hispanic Origin
Birth Date
Birth Place
Occupation and Industry

14. Death Clearance Purpose (3)
Add previously unregistered cancer cases to CCR database.
Measure case completeness and effectiveness of case-finding procedures.
Assure that cancer deaths in the file used for calculating cancer mortality statistics are appropriately accounted for in the file used for incidence reporting.

15. Death Clearance Purpose (4)
Calculation of the death certificate only (DCO) percentage
DCO % = # of DCOs for the year / total # of cancer cases for the year X 100
NPCR Standard: <3% Death Certificate Only
NPCR-CSS 2003 diagnosis year: 1.85% DCO
In addition to the benefit of adding missed cases, the death certificate follow back process provides the opportunity to improve completeness of reporting by analyzing the percentage of cancer cases diagnosed only by a death certificate (DCO rate) added to the registry data base. This rate is a recognized measure of registry completeness and is used nationally as a criterion for certification and as a factor in determining high quality data.

16. Death Clearance Process (1)
Step 1: Death Certificate Linkage
Part 1: Link all death records regardless of diagnosis from the state's vital statistics office for a specified year to CCR records to obtain death data for previously-registered cancer cases.
Regardless of cause of death
Improves data quality by incorporating values from the death record for fields common to both death and cancer records
Performed at least annually.

17. Death Clearance Process (2)
Step 1: Death Certificate Linkage (cont)
Part 2: Link all death records from the state's vital statistics office with cancer listed as a cause of death for a specified year to CCR records
All causes of death, not just immediate
Depends on availability of coding
Identifies potentially missed cases
Performed at least annually but may be performed more frequently.

18. Death Clearance Process (3)
Step 2: Death Certificate Follow-back
Required for death records that mention cancer as one of the causes of death but do not link with previously-registered CCR cases.
Includes deaths that have:
Cancer as a cause of death, but the patient is not in CCR database
Cancer as a cause of death, patient is in CCR but with a different cancer than death certificate
Extremely time intensive process

19. Death Clearance Process (4)
Step 2: Death Certificate Follow-back (cont.)
Follow-back to hospitals, certifying physicians, nursing care facilities, etc.
Determine reportability
Date of diagnosis > date of CCR reference date (start date)
Residence at diagnosis
If reportable, ascertain as much information as possible to create case report.
Confirm cancer information

20. Death Clearance Process (5)
Step 3: Create a CCR Record
Based on information identified through follow-back sources, new reportable cases created for CCR as either:
DCN – (Death Certificate Notification) Additional information was received through follow-back. Case is entered into CCR as a missed cancer case.
DCO – (Death Certificate Only) No information was received from follow-back. Case is entered into CCR using only information from death certificate.

21. Death Clearance Process (6)
Step 3: Create a CCR record (cont.)
Death Certificate Only case
Review of Death Certificates (hard copy, microfiche, SuperMICAR files)
Provides non-coded information such as:
Verification of reportable diagnosis – comparing code to literal entries on certificates such as possible, rule/out on certificate but not apparent in code

22. Death Clearance Process (7)
Step 3: Create a CCR record (cont.)
Interval between onset and death – date of diagnosis
Other information to justify as non-reportable or reportable
Information to prepare case report for inclusion in CCR

23. Death Clearance Challenges (1)
Access to deaths files/certificates for:
State residents
State residents who die in another state
Importance of providing access to CCR via Inter-Jurisdictional Exchange Program
Ability to share death certificate information on non-residents with other CCRs

24. Death Clearance Challenges (2)
Obtaining access to death certificates
Paper/microfilmed certificates
Direct access to SuperMICAR files
Fees for services

25. Death Clearance Challenges (3)
Access to electronic death files
Multiple Cause File – can be used to perform Death Certificate linkage and Death Certificate follow-back
Underlying Cause of Death File – can be used to perform Death Certificate linkage only

26. Death Clearance Challenges (4)
Timing
Death Clearance Linkage – at least annually but could be more frequently
Death Clearance Follow-back – annually
Coordinate availability of final NCHS file with accessioning of all cases for specified year into CCR
Entire process completed within 24 months of close of diagnosis year
Need to improve timing in the future

27. NPCR WEBSITES NPCR website USCS Report NPCR Data:
USCS Report
NPCR Data:

28. Summary
NPCR recognizes importance of Death Certificate matching for CCR completeness
NPCR has developed Standards to support the Death Clearance process
Availability of Vital Statistics files is critical to CCR timeliness and efficiency
Vital Statistics personnel can assist the CCR in meeting their goals

29. Contact Information
Contact info,
Thank you for allowing me this time to share information on NPCR
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