Record Consolidation Test with the 2007 Multiple Primary/Histology Rules

1. Record Consolidation Test with the 2007 Multiple Primary/Histology Rules By Frances Ross, CTR Presented at the NAACCR Annual Conference June, 2008

2. Background • First RC test analyzed the variability among registries in applying the MP rules in effect in 2000 • Created a test file of 743 source abstracts for 320 patients • Source abstracts represented all types of reporting facilities and a broad range of cancer types • Abstracts were selected to test SEER MP rules (not a random or representative sample)

3. Background • An Expert Panel determined the correct number of primaries in the test file and the correct values for critical data fields – the ‘answer file’ • 11 central registries subjected the test file to their routine RC procedures and created their own ‘answer file’ • The answer files were compared – on count of primary tumors by person and by cancer type • The results were presented in a report to the Board and at the 2003 NAACCR Annual Conference

4. R C Test 2 - Purpose Repeat the work of the first test, using the same test cases and the same general procedures BUT Apply the new 2007 Multiple Primary and Histology coding rules

5. R C Test 2 - Methods • Re-assembled a work group • Engaged a new Expert Panel • Selected all source abstracts for 236 patients from the original test file of 320 patients • Targeted cancers in the new MP/H site groupings • Not all of the ‘Other sites’ cases were included • Experts again determined a correct ‘answer file’, of tumors for each person, showing diagnosis date, primary site, histology, behavior code, and laterality

6. R C Test 2 - Results In total tumor counts, there were 4 fewer tumors under the 2007 MP/H rules By cancer site, there were: +1 tumor for Melanoma +2 tumors for Head and Neck - 1 tumor for Lung -2 tumors for urinary system -4 tumors for ‘other sites’

7. R C Test 2 - Results By person, there were 19 patients with different tumor counts:

8. R C Test 2 – Sample report 111110019 Rules DX Date Site Lat Hist Beh Rule ----------------------------------------------------------------------------- Old Rules 11162001 C509 2 8500 3 Rule 3 04272002 C502 2 8500 3 Rule 3 New Rules 11152001 C509 2 8500 3 MP 11 Hist 27 ********* ***** ** ***** ** 111115014 Rules DX Date Site Lat Hist Beh Rule ----------------------------------------------------------------------------- Old Rules 11202002 C509 1 8522 3 Rule 5a, Exc 3 New Rules 11202002 C504 1 8520 3 MP 12 Hist 1 11202002* C505* 1* 8514* 3* MP 12 Hist 14 111111102 Rules DX Date Site Lat Hist Beh Rule ----------------------------------------------------------------------------- Old Rules 07152003 C189 0 8220 3 Rule 1 New Rules 07152003 C180* 0 8140* 3 MP 11 Hist 11

9. R C Test 2 - Results Results by site: Melanoma of the skin +1 tumor There was one additional melanoma primary under the 2007 rules. This was due to 2 lesions of the same site and histology, diagnosed at the same time, but one was on the left side of the chest and the other was at the midline. Under the 2007 rules, midline tumors are counted as separate primaries from right and left sided tumors.

10. R C Test 2 - Results Results by site: Head and Neck +2 tumors There were 2 patients, each with 1 additional tumor according to the 2007 MP/H rules. This was due to the removal of the ‘Same Site’ table formerly used under the previous SEER MP rules. One patient had lesions on the tonsil (C09.0) and oropharynx (C10.8); the other had lesions on the base of tongue (C01.9) and other parts of the tongue (C02.9). These are separate tumors in 2007.

11. R C Test 2 - Results Results by site: Breast - no change in total count For the 4 patients with 1 fewer tumor each: - 3 had new tumors diagnosed within 5 years, so the change in the timing rule made these recurrences and not second primaries - 1 had a different histology on biopsy from the mastectomy; experts cited the ‘most representative specimen’ instruction and coded this as one primary

12. R C Test 2 - Results Results by site: Breast (cont.) For those patients with 1 additional tumor each: - 3 patients had ductal carcinoma and another type (tubular, medullary, desmoplastic type). These are not considered types of ductal carcinoma under the 2007 rules, so they are counted as separate primaries when found in separate tumors. - 1 patient had tumors in both the right and left breast. It was originally interpreted as a metastasis, but since it was not explicitly stated as such, it was coded under the 2007 rules as a new primary.

13. R C Test 2 - Results Results by site: Lung -1 tumor One patient had bilateral synchronous lung tumors – two on the right side and one on the left. Only the right side was biopsied. The 2007 MP/H rules for lung include explicit statements regarding the number of tumors in each lung. This scenario fell to the last rule which states that it is to be considered one primary.

14. R C Test 2 - Results Results by site: Kidney and Urinary System -2 tumors Pre-2007 MP rules defined 2 site groupings: Bladder Urinary system (kidney, renal pelvis, ureter, and other parts of the urinary tract) 2007 MP/H rules define 2 site groupings: Kidney Urinary system (bladder, renal pelvis, ureter, and other parts of the urinary tract)

15. R C Test 2 - Results Results by site: Kidney and Urinary System -2 tumors Two patients had 1 fewer tumor each: One had multiple tumors in the kidney and bladder, all diagnosed as PTCC. Since renal pelvis and bladder were in separate site groupings before 2007, this was 2 primaries. Under the 2007 rules, this is one site grouping and one primary. One patient had PTCC of the ureter and 2 years later, PTCC of the bladder. The 2007 site groupings and timing rules make this one primary now.

16. R C Test 2 - Results Results by site: Other Sites grouping -4 tumors One patient with a gastroesophageal tumor had a recurrence 14 months later. Under the 2007 MP rules, this is a new primary.

17. R C Test 2 - Results Results by site: Other Sites grouping -4 tumors Two patients with VIN3 had recurrences within a year but not within 2 months. Under the 2007 MP timing rules, these are not new primaries.

18. R C Test 2 - Results Results by site: Other Sites grouping -4 tumors The patients with the small bowel and unknown primary cancers had very limited text. These cancer reports were interpreted differently by the second EP (not as new primaries), but this is not related to changes in the 2007 MP/H rules.

19. R C Test 2 – Issues and Discussion Histology coding changes: - code the final diagnosis from the most representative specimen Breast: - new instructions regarding use of combination codes; Table 2 defines ductal types - instruction to invasive portion only - code inflammatory carcinoma only from final path - give precedence to comedocarcinoma if /2

20. R C Test 2 – Issues and Discussion Histology coding changes: Colon: - code 8210 if a polyp is mentioned - use of 8220 (FAP) and 8221 Urinary: - confusion arose over which rule to use when biopsy says ‘renal cell, clear cell’ and final path says ‘renal cell carcinoma’

21. R C Test 2 – Issues and Discussion Breast cancers – The changes in MP rules resulted in more synchronous tumors and fewer subsequent tumors, so counts by diagnosis year could differ. Urinary system – Since bladder is now grouped with renal pelvis, ureter, and other urinary sites, there may be fewer primaries abstracted. A new question arose regarding which topography code to use for multiple tumors of the bladder and other urinary sites.

22. R C Test 2 – Issues and Discussion For example, which topography code should be used for multiple tumors of the bladder and another urinary site, i.e., ureter? C67.__ Bladder C66.9 Ureter C68.8 Overlapping lesion of urinary organs C68.9 Urinary system, NOS

23. R C Test 2 – Issues and Discussion Example (cont.) If you code this scenario to C67._ (bladder) and the patient has a new bladder tumor after 3 yrs., it is NOT a new primary, but If you code this to C68._ (urinary system) and the patient has a new bladder tumor after 3 yrs., it IS a new primary per rule M7. By using code C68 the information about which urinary sites were involved gets lost.

24. R C Test 2 – Conclusion - Study was a descriptive analysis of test cases (not a random or representative sample from a population) - Identified specific scenarios where tumor counts will be different after 2007, especially by cancer site, but could not quantify impact - Changes occur at patient level; therefore counts by race and gender may be affected. POC and other studies will be affected as well, by the mix of tumor records available

25. R C Test 2 – Recommendations Specify additional site coding guidelines, particularly for urinary system Review SEER site recode groupings, since they do not align with the 2007 MP/H site groupings Develop RC guidelines for central cancer registries to - identify the appropriate site specific rule set (i.e, solid tumors, benign brain, hematopoietic diseases) - evaluate accuracy of data source to use during RC - define how to handle situations with ambiguous, conflicting or insufficient information

26. Acknowledgements Many thanks to the Record Consolidation Test Experts and Work Group Members: Peggy Adamo, RHIT, CTR Jerri Linn Phillips, MA, CTR NCI/SEER American College of Surgeons Deborah Bringman, MPH Frances E. Ross, BA, CTR University of California, Irvine Kentucky Cancer Registry Susan J. Capron Wendy Scharber, RHIT, CTR SEER Contractor Registry Widgets Cynthia Dryer, BA, CTR John Young, Jr., DrPH, CTR State Health Registry of Iowa Georgia SEER Registry Fran Michaud, BS, CTR CDC/NPCR