Introducing… The Death Clearance Manual Robin Otto, RHIA, CTR Manager, Pennsylvania Cancer Registry Co-Chair, Death Clearance Issues Workgroup NAACCR 2008 Conference Denver, Colorado

2 Outline Background Content Completion Schedule Acknowledgements Public Comment

3 Background Purpose of Death Clearance Manual– establish minimum requirements, or least common denominator, for conducting death clearance in order to achieve consistency among central cancer registries (CCR). Do more, not less - CCRs can do more but may not do less than the minimum requirements. Gaining Concensus - try to gain concensus among CCRs and standard setters before releasing the manual.

4 Background (continued) Manual includes:  Minimum requirements for conducting death clearance Example: Annual Death Clearance Match: Death Clearance match must be completed at least annually for a specified year of deaths to update death and other information on cases in the CCR database.  Guidelines and rationale to facilitate understanding the process  Standard terms and definitions  All aspects of death clearance in one resource

5 Chapter 2: Understanding Death Clearance Origin of Death Clearance- Dr. John Young, Jr.  The term death clearance originally arose from the End Results Group, one of the predecessors of the SEER Program. The term referred to the process of linking against mortality files for the purpose of clearing out all of the deaths before beginning the follow-up process and generating accurate survival statistics. The idea of following back on non-reported cancer deaths came much later when registries expanded to a population base and the emphasis was on complete and accurate incidence as well as survival data.

6 Chapter 2: Understanding Death Clearance Definition  Death Clearance is the process of matching registered deaths in a population against reportable conditions in the CCR database for two purposes: 1) ascertainment of death information for persons in the CCR (death clearance match); and 2) identification of all deaths with a reportable condition mentioned as a cause of death which are not found in the CCR database (death clearance follow-back).

7 Chapter 2: Understanding Death Clearance 2.1 Definition of death clearance 2.2 Purpose of death clearance 2.3 Death clearance process 2.4 Record linkage between CCR and Vital Records 2.5 Timing for conducting death clearance 2.6 Working with Vital Records 2.7 Vital Records cause of death section on Death Certificate

8 Chapter 3: Death Clearance Match 3.1 Linkage with mortality files  Contains minimum requirements and guidelines regarding how often, use of official mortality file, type of file (underlying or multiple cause) 3.2 Death Information Update  Lists required death fields 3.3 Best Value Selection  Guidelines for using death certificate to update CCR record

9 Chapter 4: Death Clearance Follow-Back 4.1 Linkage with mortality file  Contains minimum requirements and guidelines regarding how often, use of official mortality file, type of file (multiple cause)  Multiple Cause of Death File: The Vital Records mortality file used to perform the death clearance follow- back process must include all causes of death – the underlying cause and all contributing causes.

10 Chapter 4: Death Clearance Follow-Back 4.2 Identification of Potential Incidence Case  Criteria to Identify Potential Incidence Cases: All criteria listed below must be used to identify potential incidence cases from the mortality file. All causes of death not just underlying Patient and tumor non-matches More…

11 Chapter 4: Death Clearance Follow-Back 4.3 Death Certificate Review  Not required but if done, must comply with minimum requirements  May be excluded based on death certificate review Coding Error Non-reportable condition Tumor or neoplasm (not brain/CNS) Non-reportable ambiguous terminology Diagnosed prior to being reportable Non-resident

12 Chapter 4: Death Clearance Follow-Back 4.3 Death Certificate Review  Death Certificates Included for Follow-back Based on Death Certificate Review: When death certificates are reviewed, the following types of cases must be followed back to obtain clinical information before a final determination can be made. Reportable condition Reportable ambiguous terminology History of When in doubt

13 Chapter 4: Death Clearance Follow-Back 4.4 Follow-back on Potential Incidence Cases  Basic information on conducting follow- back  Follow-back Source: At least one follow-back source must be contacted to obtain clinical information for each potential incidence case.

14 Chapter 4: Death Clearance Follow-Back 4.5 Interpreting Death Clearance Follow-back information  Sufficient Follow-back: Information received from follow-back is considered sufficient to take a case out of DCO status when at a minimum the information provides both clinical confirmation of the diagnosis by a medical practitioner and the exact or estimated diagnosis date.

15 Chapter 4: Death Clearance Follow-Back 4.5 Interpreting Death Clearance Follow-back information  Non-physician coroner cannot provide confirmation of diagnosis.  Detailed instructions provided to estimate diagnosis dates from vague information.  Unknown diagnosis date cannot be entered on any case from death clearance follow-back process.

16 Chapter 4: Death Clearance Follow-Back 4.6. Final Disposition of Potential incidence Cases  MDO: If the diagnosis cannot be clinically confirmed from follow-back but the diagnosis date can be estimated using information on the death certificate, the case must be abstracted as a DCO. DCO: a case for which the death certificate is the only source of information.

17 Chapter 4: Death Clearance Follow-Back 4.6. Final Disposition of Potential incidence Cases  History of: reportable when the cause of death prefaced with “history of” is the underlying cause: Underlying cause means this condition was the disease which initiated the train of events leading directly to death. Underlying cause is used to calculate standard mortality statistics.

18 Chapter 4: Death Clearance Follow-Back 4.7 Death Clearance Follow-Back Complete: For the death clearance follow-back process to be complete for a specified year, both the following conditions must be met:  All potential incidence cases must be resolved as a missed incidence case, DCO, or excluded as non-reportable; and  All cases determined to be a missed incidence case or DCO must be entered.

19 Chapter 4: Death Clearance Follow-Back 4.8 Abstracting Reportable Cases  Provides guidelines for abstracting cases determined to be missed incidence cases.  Provides detailed instructions for abstracting cases as DCOs.

20 Chapter 4: Death Clearance Follow-Back 4.9 DCO Percentage  Explains how to calculate DCO percentage for all standard setters.  Documents DCO percentage standards for all standard setters.

21 Chapter 4: Death Clearance Follow-Back 4.10 Analysis of Death Clearance Follow-Back Results  Explains how to analyze results to get more out of the process than just a DCO percentage.

22 Completion Schedule Final Review by Work Group Final Review by ROC Final Review by Cancer Registry Steering Committee NAACCR Webinar in September 2008 Opportunity for public comment Submission to NAACCR Board

23 Acknowledgements Susan Bolick-Aldrich, Co-Chair Wendy Aldinger Stacey Carson Gayle Clutter Lois Dickie Cate Ellis Kay Gephard Susan Gershman Martha Graves Jeannette Jackson- Thompson Carol Johnson Karen Knight Serena Kozie Helena Krakalovich Karen Ledford Nancy Lozon Kathleen McKeen Susan Strauss-Willson Heather Stuart Marilyn Wooton

Comment/Questions Robin Otto