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2007 Multiple Primary Rules: Impact on Tumor Counts Gary M. Levin, BA, CTR Florida 2007 Multiple Primary Rules: Impact on Tumor Counts Gary M. Levin, BA, CTR Florida Cancer Data System NAACCR 2008 Annual Conference

Presentation Overview Florida Multiple Primary 2007 Automated Procedure Estimated Impact on Florida Tumor Counts Presentation Overview Florida Multiple Primary 2007 Automated Procedure Estimated Impact on Florida Tumor Counts Estimated Impact on Non-Florida Tumor Counts Conclusions Future 2

Special Thanks To All Who Contributed To The MP 2007 Algorithm Mayra Alvarez, RHIT, Special Thanks To All Who Contributed To The MP 2007 Algorithm Mayra Alvarez, RHIT, CTR Meg Herna, BA, CTR Jill Mac. Kinnon, Ph. D, CTR Sarah Manson, BS, RHIT, CTR Mehrdad Nadji, MD Wendy Scharber, RHIT, CTR Brad Wohler, MS MP 2007 Algorithm is CTR Driven 3

MP 2007 Automated Procedures Design 4 MP 2007 Automated Procedures Design 4

MP 2007 Automated Procedures Design 5 MP 2007 Automated Procedures Design 5

MP 2007 Automated Procedures Methodology Primary Site Pairs Histology Pairs Laterality Check Timing Rules MP 2007 Automated Procedures Methodology Primary Site Pairs Histology Pairs Laterality Check Timing Rules Specialized Coded Rules for Deviation in Model 6

MP 2007 Automated Procedures Methodology – Site Pairs C 160 1 C 160 C MP 2007 Automated Procedures Methodology – Site Pairs C 160 1 C 160 C 268 2 C 160 C 161 1 C 160 C 269 2 C 160 C 162 1 C 161 C 268 2 C 160 C 163 1 C 160 C 164 C 340 C 390 3 C 341 C 390 3 C 161 C 269 2 C 342 C 390 3 1 C 162 C 268 2 C 343 C 390 3 C 160 C 165 1 C 162 C 269 2 C 160 C 166 1 C 163 C 268 2 C 160 C 168 1 C 163 C 269 2 C 348 C 390 3 C 349 C 390 3 Experience has C 160 C 169 1 C 164 C 268 2 shown are likely Reasonable Extension Direct application the same: of MP/H Rules (specific and general site) - data sources - Level of automation - Review of results 7 C 155 C 160 3 C 159 C 160 3 Correctly link GE Junction cases C 030 C 470 S* C 030 C 490 S* C 031 C 470 S* C 031 C 490 S* C 039 C 470 S* C 039 C 490 S* Correctly link Sarcoma cases Slide Courtesy of Wendy Scharber

MP 2007 Automated Procedures Methodology – Histology Pairs 8010 8011 8010 8012 8010 8020 MP 2007 Automated Procedures Methodology – Histology Pairs 8010 8011 8010 8012 8010 8020 8010 8140 8010 8380 8050 8260 9380 9441 First Version Needs further evaluation from: • Registrars • Pathologists • Currently under review by Tumor Linkage Workgroup Slide Courtesy of Wendy Scharber 8

Primary Sites C 000 -C 148, C 300 -C 329 MP 2007 Control Table Primary Sites C 000 -C 148, C 300 -C 329 MP 2007 Control Table Histology 8000 -8799, 8992 -9139, 91419999 C 149 -C 179, C 190 -C 299, C 330 - 8000 -8799, 8992 -9139, 9141 C 339, C 350 -C 439, C 4509509, 9515 -9999 C 499, C 510 -C 609, C 620 C 648, C 650 -C 658, C 660 C 668, C 690 -C 699, C 702 C 709, C 721 -C 724, C 726 C 727, C 730 -C 750, C 754 -C 999 C 180 -C 189 8000 -8799, 8992 -9139, 91419999 C 340 -C 349 8000 -8799, 8992 -9139, 91419999 C 440 -C 449 8720 -8780 C 440 -C 449 8000 -8719, 8781 -8799, 89929139, 9141 -9999 C 500 -C 509 8530 C 500 -C 509 8000 -8529, 8531 -8799, 89929139, 9141 -9999 C 619 8030 -8576 C 619 8580 -8799, 8992 -9139, 91419999 C 619 8000 -8029 C 649 8000 -8799, 8992 -9139, 91419999 C 649 8960 C 692, C 699 9510 -9514 C 700, C 701, C 7108000 -8799, 8992 -9139, 9141 C 719, C 720, C 725, C 728, C 729, 9999 C 751 -C 753 C 000 -C 809 9140 C 659, C 669 -C 689 8000 -8799, 8992 -9139, 91419999 C 000 -C 809 8800 -8959, 8961 -8991 Invasive/ Diagnosis Timing Insitu Timing 1825 Head and Neck 60 365 Colon Schema ID Class Used in Timing Y 1 0 -2 2 0 -2 Y 3 0 -2 Y Y 4 5 0 -2 Y N 6 7 0 -2 Y N 8 9 0 -2 N N 10 11 0 -2 Y N N 12 13 14 0 -2 0 -2 N N 15 16 0 -2 Y Y 17 18 0 -2 365 Other Sites 60 Laterality Check Y 60 Schema Slide Courtesy of Wendy Scharber 60 1095 Lung 60 60 60 Melanoma 365 Skin - Other 99999 60 1825 Breast. Inflamatory 1825 Breast 60 60 99999 Prostate-Epithelial 365 Prostate - Other 60 60 99999 Prostate - General 1095 Kidney 999999999 Kidney - Wilms 99999 Retinoblastoma 99999 Brain 99999 60 60 99999 Kaposi Sarcoma 1095 Urinary System 9 365 Sarcoma

MP 2007 Automated Procedures Methodology – Specialized Code Urinary – M 6 Rule Urinary MP 2007 Automated Procedures Methodology – Specialized Code Urinary – M 6 Rule Urinary – M 8 Rule Other Sites – M 5 Rule (Kaposi Sarcoma) Other Sites – M 7 Rule (Ovary) 10

MP 2007 Multiple Primaries Calculator 11 MP 2007 Multiple Primaries Calculator 11

Data Background for Linkage Based on 3. 2 Million Source Records from Florida Linked Data Background for Linkage Based on 3. 2 Million Source Records from Florida Linked Diagnosis Year 1981 - Present Includes Non-Analytic Cases – Primarily Class 3 Linkage done using Source Records Analysis Focuses on Diagnosis Year 2000 -2006 12

Linkage Parameters Pre-MP 2007 Rules Estimated Impact – Florida No Timing Rules Analytic/Non-Analytic Considered Linkage Parameters Pre-MP 2007 Rules Estimated Impact – Florida No Timing Rules Analytic/Non-Analytic Considered Equal Unknown Diagnosis Year use Date of First Contact 13

Linkage Parameters MP 2007 Rules Estimated Impact – Florida MP 2007 Rules Non-Analytic Cases Linkage Parameters MP 2007 Rules Estimated Impact – Florida MP 2007 Rules Non-Analytic Cases - Skip Timing Rules Unknown Diagnosis Year - Skip Timing Rules 14

Estimated Impact – Florida Head and Neck • Timing Rule of > 5 years Estimated Impact – Florida Head and Neck • Timing Rule of > 5 years • Minimal change in counts • Removing Same Sites Table • Examples: Upper/Lower Lip, Upper/Lower Gum • Cannot Assess impact • Original abstracting would have merged cases Site Pre-2007 MP 2007 Difference Percent Gum, Other Mouth 2750 2745 -5 -0. 18 Floor of Mouth 1308 1312 4 0. 31 15

Estimated Impact – Florida Colon • Timing Rule > 1 year – Small change Estimated Impact – Florida Colon • Timing Rule > 1 year – Small change in counts – Timing Rule – Extension of Florida Site Pairs for 2007 • Did not assess Familial Polyposis Sub-site Cecum Appendix Ascending Colon Hepatic Flexure Transverse Colon Splenic Flexure Descending Colon Sigmoid Colon Large Intestine, NOS Rectosigmoid Junction Rectum Pre-2007 MP 2007 Difference 13104 837 12208 3341 5272 2218 3802 16994 5960 6689 14725 16 13188 845 12306 3355 5306 2239 3851 17125 6019 6494 14595 84 8 98 14 34 21 49 131 59 -195 -130 Percent 0. 64 0. 96 0. 80 0. 42 0. 64 0. 95 1. 29 0. 77 0. 99 -2. 92 -0. 88

Estimated Impact – Florida Lung • Timing Rule of > 3 years • Small Estimated Impact – Florida Lung • Timing Rule of > 3 years • Small change in counts • Timing Rules • Extensions of Florida Site Pairs for 2007 • Non-Small Cell Adenocarcinoma with Small Cell Carcinoma • Cannot Assess • Original abstracting would have merged cases Site Lung and Bronchus Pre-2007 MP 2007 118442 116492 17 Difference -1950 Percent -1. 65

Estimated Impact – Florida Melanoma • No Changes in Timing Rule > 60 Days Estimated Impact – Florida Melanoma • No Changes in Timing Rule > 60 Days • Small change in counts • Extensions of Florida Site Pairs for 2007 Site Melanoma of the Skin Pre-2007 MP 2007 37050 Difference 36928 -122 Percent -0. 33 Melanoma Issue Midline Laterality is considered a separate primary. The MP 2007 Procedure does NOT handle this. To properly identify Midline, would require additional resources which are NOT available. To be able to properly count Midline Melanoma would require NAACCR to consider adding a separate laterality code dedicated to Midline. 18

Estimated Impact – Florida Breast • Timing Rule of > 5 years • Small Estimated Impact – Florida Breast • Timing Rule of > 5 years • Small change in counts • Timing Rules • Inflammatory carcinoma is one primary • Did Not Assess Site Breast Pre-2007 MP 2007 116274 118127 19 Difference 1853 Percent 1. 59

Estimated Impact – Florida Kidney • Timing Rule of > 3 years • Minimal Estimated Impact – Florida Kidney • Timing Rule of > 3 years • Minimal change in counts • Timing Rules • MP 2007 Rules split Kidney and Renal Pelvis • Incidence Site Group includes both Kidney and Renal Pelvis • Difficult to assess impact Site Kidney and Renal Pelvis Pre-2007 MP 2007 21113 21152 20 Difference Percent 39 0. 18

Estimated Impact – Florida Renal Pelvis, Ureter, Bladder etc. • Timing Rule of > Estimated Impact – Florida Renal Pelvis, Ureter, Bladder etc. • Timing Rule of > 3 years • Changes in counts • Rule M 6 and M 8 • Removing Same Sites Table • Multiple tumors on same side (M 3, M 4) • MP 2007 Module does not include these rules at this time Site Urinary Bladder Ureter Other Urinary Organs Pre-2007 MP 2007 Difference Percent 36716 36577 -139 -0. 38 1451 1170 -281 -19. 37 459 382 -77 -16. 78 21

Estimated Impact – Florida Other Sites • Timing Rule of > 1 year • Estimated Impact – Florida Other Sites • Timing Rule of > 1 year • Small change in counts • Timing Rules • Removing Same Sites Table • Cannot Assess impact • Original abstracting would have merged cases Site Pre-2007 MP 2007 • Original Bile Duct Intrahepatic abstracting would have merged cases 1027 1017 Difference Percent -10 -0. 97 Liver 7589 7621 32 0. 42 Nose, Nasal Cavity and Middle Ear 1154 1169 15 1. 30 Cervix Uteri 6955 6956 1 0. 01 Larynx 8262 8284 22 0. 27 953 965 12 1. 26 Other Endocrine including Thymus 22

Estimated Impact – Florida Totals No Change in Counts Site 1981 - Present 2000 Estimated Impact – Florida Totals No Change in Counts Site 1981 - Present 2000 – 2006 Pre-2007 MP 2007 Difference Percent 2577278 2579157 1879 0. 07 793947 794445 498 0. 06 23

Linkage Parameters Pre-MP 2007 Rules Estimated Impact – Non-Florida Used Florida’s Data Used Florida Linkage Parameters Pre-MP 2007 Rules Estimated Impact – Non-Florida Used Florida’s Data Used Florida MP 2007 Procedure for Estimate Changed Timing Rules to 60 Days where applicable Reinstated Pre-MP 2007 Site Pairs Non-Analytic - Skip Timing Rules Unknown Diagnosis Year - Skip Timing Rules 24

Linkage Parameters MP 2007 Rules Estimated Impact – Non-Florida MP 2007 Rules Non-Analytic - Linkage Parameters MP 2007 Rules Estimated Impact – Non-Florida MP 2007 Rules Non-Analytic - Skip Timing Rules Unknown Diagnosis Year - Skip Timing Rules 25

Estimated Impact – Non-Florida Head and Neck Timing Rule of > 5 years – Estimated Impact – Non-Florida Head and Neck Timing Rule of > 5 years – Small Change Site Pre-2007 MP 2007 Difference Percent Gum, Other Mouth 2773 2745 -28 -1. 01 Floor of Mouth 1328 1312 -16 -1. 20 Breast Site Breast Pre-2007 MP 2007 119370 118127 26 Difference -1243 Percent -1. 04

Estimated Impact – Non-Florida Colon Timing Rule > 1 year – Small Change Sub-site Estimated Impact – Non-Florida Colon Timing Rule > 1 year – Small Change Sub-site Cecum Appendix Ascending Colon Hepatic Flexure Transverse Colon Splenic Flexure Descending Colon Sigmoid Colon Large Intestine, NOS Rectosigmoid Junction Rectum Pre-2007 MP 2007 Difference 13201 848 12322 3358 5313 2239 3853 17170 6121 6524 14779 13188 845 12306 3355 5306 2239 3851 17125 6019 6494 14595 27 -13 -3 -16 -3 -7 0 -2 -45 -102 -30 -184 Percent -0. 10 -0. 35 -0. 13 -0. 09 -0. 13 0. 00 -0. 05 -0. 26 -1. 67 -0. 46 -1. 25

Estimated Impact – Non-Florida Lung Timing Rule of > 3 years – Small Change Estimated Impact – Non-Florida Lung Timing Rule of > 3 years – Small Change Site Lung and Bronchus Pre-2007 MP 2007 117565 116492 Difference -1073 Percent -0. 91 Kidney Site Kidney and Renal Pelvis Pre-2007 MP 2007 21559 21152 28 Difference -407 Percent -1. 89

Estimated Impact – Non-Florida Renal Pelvis, Ureter, Bladder etc. Timing Rule of > 3 Estimated Impact – Non-Florida Renal Pelvis, Ureter, Bladder etc. Timing Rule of > 3 years - Change Site Urinary Bladder Pre-2007 MP 2007 Difference Percent Other Urinary Organs 36577 -291 -0. 79 1222 Ureter 36868 1170 -52 -4. 26 409 382 -27 -6. 60 Melanoma Timing Rule > 60 Days – No Change Site Melanoma of the Skin Pre-2007 MP 2007 36928 29 Difference Percent 0 0. 00

Estimated Impact – Non-Florida Other Sites Timing Rule of > 1 year - Change Estimated Impact – Non-Florida Other Sites Timing Rule of > 1 year - Change Site Pre-2007 MP 2007 Difference Percent Intrahepatic Bile Duct 1044 1017 -2. 59 Liver 7729 7621 -108 -1. 40 Nose, Nasal Cavity and Middle Ear 1165 1169 4 0. 34 Cervix Uteri 7039 6956 -83 -1. 18 Larynx 8376 8284 -92 -1. 10 974 965 -9 -0. 92 Other Endocrine including Thymus 30

Estimated Impact – Non-Florida Totals Change in Counts Site 1981 - Present 2000 – Estimated Impact – Non-Florida Totals Change in Counts Site 1981 - Present 2000 – 2006 Pre-2007 MP 2007 Difference Percent 2610925 2579157 -31768 -1. 22 799197 794445 -4752 -0. 59 31

Conclusions WARNING “ Staring at Numerical Results Can be Dangerous to Your Health ” Conclusions WARNING “ Staring at Numerical Results Can be Dangerous to Your Health ” Small Percentage Change Due to New MP 2007 Rules Need Further Analysis Need Detail Review of Unexpected Counts Need to Compare Incidence Rates 32

Future NAACCR Tumor Linkage Workgroup Review Validation of Site Pairs Validation of Histology Pairs Future NAACCR Tumor Linkage Workgroup Review Validation of Site Pairs Validation of Histology Pairs Evaluation of Florida MP 2007 Algorithm NPCR Development of Generalized Algorithm for Use by All Registries. Plan to function similar to CS Add Scoring mechanism to weight the reliability of each linkage Continue to Analyze and Refine Algorithm/Procedure 33

Thank You Questions 34 Thank You Questions 34