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

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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

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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

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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 CCRs
• Set national standards for data completeness,
  timeliness, and quality

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Federally Funded Cancer Registries, 2005
Seattle/Puget Sound
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
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NPCR Standards for Completeness

• 95 of the expected cases of reportable cancer
  occurring in a states residents in a diagnosis
  year will be reported to the CCR.
• Completeness of information
• Unknown
• age lt3
• sex lt3
• race lt5

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NPCR Standards for Timeliness

• 90 of unduplicated, expected, malignant cases
  within 12 months
• 95 of unduplicated, expected, malignant cases
  within 24 month

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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 registrys
  state/territory.

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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.

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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.

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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.
  

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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.

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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

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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

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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.

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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 lt3 Death Certificate Only
• NPCR-CSS 2003 diagnosis year 1.85 DCO

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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.

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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.

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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

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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 gt 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

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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.

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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

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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

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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

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Death ClearanceChallenges (2)

• Obtaining access to death certificates
• Paper/microfilmed certificates
• Direct access to SuperMICAR files
• Fees for services

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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

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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

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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

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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

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Contact Information gcc6_at_cdc.gov 770-488-9480