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									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
            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
 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
              Federally Funded Cancer Registries,
        Seattle/Puget
                             2005
        Sound




                                                                                Detroit


                                                                                                  CT
                                                              IA
    San Francisco/
    Oakland                                                                                  NJ
                                        UT
      San Jose/
      Monterey                 CA                                          KY

                     Los
                     Angeles
                                                  NM

                                                                            Atlanta
                                                                   LA




                                    HAWAII

                                                               NPCR *
                  ALASKA                                            `                     PUERTO
                                                                                          RICO
*National
                                                REPUBLIC       SEER †
            Program of Cancer Registries     (CDC) PALAU
                                                OF                                                     VIRGIN
†Surveillance,  Epidemiology, and End Results Program (NCI)                                            ISLANDS
                                                               NPCR/SEER
       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%
     NPCR Standards for
        Timeliness
 90% of unduplicated, expected,
  malignant cases within 12 months

 95% of unduplicated, expected,
  malignant cases within 24 month
      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.
        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.
       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.
       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.
       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.
 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
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
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.
 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
 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.
  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.
  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
 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
 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.
 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
 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
          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
        Death Clearance
         Challenges (2)
 Obtaining access to death certificates
  • Paper/microfilmed certificates
  • Direct access to SuperMICAR files
  • Fees for services
          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
           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
          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
              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
Contact Information
   gcc6@cdc.gov
   770-488-9480

								
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