Transcript CLUTTER_NAPHSIS2 6

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,
2005
Seattle/Puget
Sound
Detroit
CT
IA
San Francisco/
Oakland
NJ
UT
San Jose/
Monterey
CA
KY
Los
Angeles
NM
Atlanta
LA
HAWAII
ALASKA
*National
REPUBLIC
(CDC)
OF PALAU
Program of Cancer Registries
Epidemiology, and End Results Program (NCI)
†Surveillance,
NPCR *
`
SEER †
NPCR/SEER
PUERTO
RICO
VIRGIN
ISLANDS
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 dataexchange 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 nonregistered 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 previouslyregistered 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 Followback (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 nonreportable 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
 Timing
Death Clearance
Challenges (4)
• 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
[email protected]
770-488-9480