The Role of Death Certificates in the Standards of the National Program of Cancer Registries

1. The Role of Death Certificates in theStandards 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

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

4. KY LA CA Federally Funded Cancer Registries, 2005 Seattle/PugetSound Detroit CT IA San Francisco/ Oakland NJ UT San Jose/ Monterey Los Angeles NM Atlanta HAWAII * ` † NPCR PUERTO RICO ALASKA SEER REPUBLIC OF PALAU *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%

6. NPCR Standards for Timeliness • 90% of unduplicated, expected, malignant cases within 12 months • 95% of unduplicated, expected, malignant cases within 24 month

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.

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.

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.

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.

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

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 ClearanceChallenges (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 ClearanceChallenges (2) • Obtaining access to death certificates • Paper/microfilmed certificates • Direct access to SuperMICAR files • Fees for services

25. Death ClearanceChallenges (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 ClearanceChallenges (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 http://www.cdc.gov/cancer/npcr/index.htm USCS Report http://www.cdc.gov/cancer/npcr/uscs/index.htm NPCR Data: http://wonder.cdc.gov/cancer.html

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 gcc6@cdc.gov 770-488-9480