2015 FCDS Annual Conference

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1 F l o r i d a S t a t e w i d e C a n c e r R e g i s t r y Convention Brief 2015 FCDS Annual Conference July 29-30, 2015 Trade Winds Resort and Hotel St Petersburg, Florida 2015 FCDS Annual Conference Audio Recordings and Presentation Slides Available for Download on FCDS Website CEUs for Conference Attendees CEUs NOT AVAILABLE FOR RECORDED SESSIONS 1

2 FCDS Update: The State of the State Gary M. Levin, BA, CTR Deputy Project Director Retired 2014 Dr. Jill A. MacKinnon, PhD, CTR Forty Years of Service to the FCDS, UM, the State of Florida and the Nation 2

3 NAACCR Gold Certification Thirteenth Consecutive Year!! Thanks to All for YOUR Hard Work and Dedication Which Makes This Possible NPCR Registry of Distinction Thanks to All for YOUR Hard Work and Dedication Which Makes This Possible 3

4 FCDS Awards Jean Byers Award:138 up from 124 in 2014 Pat Strait Award: 250 up from 205 in 2014 We Will be Revisiting Metrics This Year GREAT JOB!!!! Education LMS New Abstractor: 67 taken/65 Pass; Avg. Score 88% Abstractor Renewal: 382 taken/327pass; Avg. Score 84% Basic Course: 112 Taken/14 Completed with Score 80%+ Adding Direct Coded SS2000 and 7 th Edition c/p TNM In The Future will add 8 th Edition FCDS Webcast Series NAACCR Webinar Series Multiple Host Sites NAACCR CTR Exam Prep Series Student Desktop 4

5 Physician Reporting Update Increase Physician Registration 1,867 Physicians in ,573 Physicians in 2015 Increase Physician Reporting 70% in % in ,000,000+ Claims Submitted Follow Up System Update To Assist COC Facilities With Follow Up Includes: Date of Last Contact Treatment and Treatment Date Has Been Available for One Year 185 Requests 320,652 Cases Requested 5

6 The Levin Family News Chris & Jen Married July 18 th, 2015 Life After Retirement: An Epidemiologist s Perspective Jill A. MacKinnon, PhD, CTR Epidemiologist and Consultant to the Florida Cancer Data System 6

7 Florida Cancer Data System Data Request Automated System Making a Data Request 14 No Annual Meeting would be complete Without an update 7

8 Health Status of Florida Cancer Survivors: Linkage of the National Health Interview Survey (NHIS) with the Florida Cancer Data System (FCDS) David J. Lee 1,2,3, Eric A. Miller 4, Monique Hernandez 1,3, Jill MacKinnon 1,3 Laura A. McClure 3, Stacey L. Tannenbaum 3 William G. LeBlanc 2 1 Florida Cancer Data System (FCDS), University of Miami Miller School of Medicine 2 Department Public Health Sciences, University of Miami Miller School of Medicine 3 Sylvester Comprehensive Cancer Center, University of Miami Miller School of Medicine 4 National Center for Health Statistics, Centers for Disease Control and Prevention. National Health Interview Survey Nationally representative survey of the civilian noninstitutionalized U.S. population conducted since 1957 Questionnaire Content: Basic socio-demographics Health conditions and utilization Health status, health care services, and behaviors Cancer Supplement Content: Screening & family history. Physical activity, diet & nutrition Years collected: 1987, 1992, 2000, 2003, 2005, 2008,

9 Health Status of Florida Cancer Survivors Using the linked NHIS-FCDS dataset, we compared agegroup specific health status of Florida cancer survivors to those without a cancer history at the time of the NHIS interview (pooled n=1,707,734) We used NHIS variables on self-rated health and functional limitations. Health Status of Florida Cancer Survivors We found substantially worse health status in cancer survivors compared to those with no cancer history ( ) 2+ Functional Limitations: 18-44y: 25.0% [ ] cancer survivors vs. 8.0% [ ] non-cancer survivors 45-64y: 38.8% [ ] cancer survivors vs. 19.5% [ ] non-cancer survivors. 9

10 The Road Ahead Establish a consortium of interested cancer registries nationwide to conduct similar linkages with national health surveys to create an unparalleled data resource of sociodemographics, health status, behaviors, screening, and healthcare use, among cancer registry cases NCHS buy-in would require the development of an. efficient and completely secure third-party mechanism for streamlined data linkage A virtual registry-like model? To All FCDS Partners Who Made This Possible I bow to your awsomeness! David Lee:. dlee@miami.edu

11 21 Obesity Related Cancers FLORIDA CANCER DATA SYSTEM ANNUAL MEETING ST. PETERSBURG, FLORIDA 7/29/2015 Annual Reports to the Nation

12 Obesity-related Cancers 23 Esophagus, colon, rectum, pancreas, kidney, renal pelvis, breast (age>49), corpus and uterus, NOS Measurement Definitions(BMI kg/m2) Overweight BMI Obesity (BMI>=30) Extreme Obesity (BMI>=40) Associations Excess Weight Lack of sufficient physical activity 24 12

13 Cancer Risk Associations 25 Florida Rates Corpus and Uterus, NOS > 20 years of age, Year 2004 Year 2005 Year 2006 Year 2007 Year 2008 Year 2009 Year 2010 Year 2011 Year 2012 Year

14 FCDS Special Reports 27 Obesity/Inactivity and Cancer Risk FCDS Data BRFSS/YRBS Data Healthy People 2020 Objectives HPV Related Cancers Potential Impacts Guidance for hypothesis driven research Comparisons to national statistics Targeted prevention/control activities Using FCDS Data for Cancer Control Planning: Developing Community Profiles DOROTHY PARKER UNIVERSITY OF MIAMI SYLVESTER COMPREHENSIVE CANCER CENTER FLORIDA CANCER DATA SYSTEM ANNUAL MEETING JULY 29,

15 Alternate title: Confessions of a cancer registry data user Hi my name is I have been using cancer registry data since 1978 Started small and local Metropolitan Washington Regional Cancer Registry Dabbled with SEER data Moved to bigger data FLORIDA Started using FCDS data in 1992 for the Florida Cancer Plan Cancer Control and Research Advisory Council (C-CRAB) Now a full-blown cancer data addict using FCDS data for planning interventions and research Forming a cancer data users support group Previous uses - county-level data FCDS Annual Reports Florida Cancer Plans 1981 to present Numbers of cases & deaths Age-adjusted and crude rates (never really use crude rates) Percent late stage diagnosis Sometime by race, gender, Hispanic origin Limitation Disparities between sub-groups are masked, particularly in large and/or diverse counties 15

16 Miami Dade County Community Profiles 2015 Profiles for 8 communities in Miami Dade County Combined Census Tracts to define community Socio-economic data and description of the area, including health care resources Incidence and Mortality numbers and age-adjusted rates Stage at diagnosis percent late stage (regional + distant) Comparison to Florida and US (SEER) data Community organizations (CABs) Resources for researchers and program planners Example of maps: Hialeah Communities Hialeah Liberty City Little Haiti Little Havana Miami Gardens Opa Locka Overtown South Dade 16

17 County Profiles One for each county in Sylvester Cancer Center s catchment area Miami Dade, Broward, Palm Beach Monroe, St. Lucie, Martin Similar format and content as community profiles Includes BRFSS data on cancer screening Includes 12 cancer sites All Cancers Bladder Breast (female) Cervical Colorectal Leukemia Lung Melanoma Non-Hodgkin s Lymphoma Oral cavity and pharynx Pediatric cancers Prostate Cancer Site-Specific Profiles For Sylvester Cancer Center catchment area For 12 cancer sites County, State and US data All Cancers Bladder Breast (female) Cervical Colorectal Leukemia Lung Melanoma Non-Hodgkin s Lymphoma Oral cavity and pharynx Pediatric cancers Prostate Includes behavioral data from BRFSS 17

18 Using FCDS data for Disparities Research Investigators at Sylvester Cancer Center are using the data for preliminary analysis of cancer disparities Breast cancer, including male breast cancer and hormone receptor data Lung cancer Urologic cancers Gynecologic cancers Skin cancer HPV-associated cancers (cervical, vaginal, vulvar, anal, oral, penile, bladder) Thyroid Preliminary analyses for grant proposals and future research Apply results for interventions Gary M. Levin, BA, CTR FCDS Annual Meeting 7/29/

19 Innovative Data Usage Expand Linkages With External Partners Medicare Tissue Bio-Repositories Studies/Survey National Health Interview Survey (FCDS/NCHS) Cancer Risk Organ Transplant Recipients Oncotype DX Linkage Project NIH-AARP Diet and Health Study ACS Cancer Prevention Study 19

20 Innovative Data Usage Precision Medicine Personalized Treatment Cancer Care Delivery Virtual Pooled Registry Virtual Tissue Repository Outcomes Based Data Repositories UNC/NCCCR Collaboration Claims Oriented California Healthcare Foundation - Initiative Florida Cancer Control & Research Advisory Council - Road Map Goal Other Topics Meaningful Use Stage 2 Physician Reporting Florida first state to have physicians in production TNM Staging No Formal Presentation on New Requirements SEER 2014 Training Assessment for TNM Staging Evaluation of TNM Staging from Pathology Reports The Commission on Cancer FORDS Revision Project Survivorship Care Plans 20

21 Data Acquisition Update FCDS ANNUAL MEETING JULY 29 AND 30 Reporting Entities Summary Hospitals 248 Radiation Treatment Centers 142 Surgery Centers 456 Pathology Labs (CLIA s) 1,049 Hematologists 1 Oncologists 369 Urologists 342 Dermatologists 634 Other States 42 Other Specialty Physicians 8 Total 3,291 Reporting Entities 21

22 2014 Abstracts Received As of July 1, ,931 Abstracts for the 2014 Data Year Hospitals 157,102 Radiation Treatment Centers 1,455 AMBI Surg 40 Dermatology Physician Abstracts 9,334 Physician Reporting Dermatology (as of July 1) 5,691 cases reported 7,560 cases reported 7,647 cases reported 9,559 cases reported 5,991 cases reported Total since inception..36,448 cases 634 of 771 have sent data (82% of registered) 22

23 Physician Registration Counts Registered as of July 1, 2015 HEMA/ONC 503 Hematology 22 Oncologists 173 Urologists 486 Dermatologists 792 Other (MU2) 383 TOTAL 2,359 Growth since July Physician Reporting Oncologists 1,528,870 Claims Received Urologists 890,618 Claims Received HEMA/ONC 7,072,151 Claims Received Hematologists 72,135 Claims Received Total Physician Claims Received 9,563,774 (as of July 1, 2015) 23

24 Veterans Administration Data Usage Agreement signed with all 6 VA hospitals in Florida Welcome! Orlando VA Medical Center Tampa VA Hospital Bay Pines VA Medical Center Miami VA Medical Center West Palm Beach VA Medical Center North Florida/South Georgia Veteran Healthcare System Better representation of our veterans in Florida data Improvement of our completeness Look forward to working with them Abstract Counts at Deadline (6/30) and 1 year later Deadline 1 Year Later 2009 Data (6/2010) 166, , Data (6/2011) 136, , Data (6/2012) 149, , Data (6/2013) 165, , Data (6/2014) 171, , Data (6/2015) 167,931 TBD Average 29K cases up to one year late.. 24

25 Late Reporting We met 24 month completeness standards for ; however we are below the 12 month standard o 24 Month Standard: 95.00% FCDS 24 Month: 97.22% o 12 Month Standard: 90.00% FCDS 12 Month: 87.53% Late Reporting 25

26 Late Reporting Even greater focus on Late Reporters Plans for completion Improved Communication Tracking and Follow -up More involvement from the Department of Health For Facilities/Providers Repeatedly Late Have not submitted a plan of action for delinquent cases within agreed upon date Possible enforcement of penalties Effect of Late Reporting on Data & Completeness FCDS Annual Meeting July 29,

27 What Timeliness Report cases within 12 months of dx. Technically within 6 months post dx Quality Accurate case reporting Completeness All cases were reported How Cases coming in well past deadline 24+ months Casefinding mechanisms completed Mortality follow-back AHCA follow-back 24 month + deadline not added to rates Researchers and requestors 27

28 How much DX Year 12+ late 24+ months late ,261 9, ,974 7, ,759 7, ,163 7, ,410 6, ,442 6, ,713 6, ,260 6, ,784 6, ,955 6, ,980 6, ,064 4, ,004 2, ,546 Where County CFD 2015 Added cases % of cases added between 2014 & 2015 LIBERTY % WASHINGTON % VOLUSIA % COLLIER % CITRUS % FRANKLIN % GULF % HOLMES % 28

29 Conclusion Late cases are not used in rate calculation Significant impact on rates Provided to researchers Public Health Policy May or may not be allocating prevention $ accurately Preliminary research / fishing Researcher may conclude nothing there ~~Type II error No effect when there really was Putting it into Practice Implementing Meaningful Use Stage 2 in Florida Florida Cancer Data System Annual Meeting St. Petersburg, FL July 29 th,

30 Readiness MU2 Webpage Our Onboarding Process CDA Central Registry NIST & CDA Validation Plus 30

31 FCDS Critically Required Data Elements Patient First Name Patient Last Name Patient Gender Patient DOB Author NPI Patient Street Address Patient City Patient State Patient Zip Code Primary Site Diagnosis Date Behavior Histology Laterality (for paired sites only) Summary of MU2 Registration Registrations by Status Practices Physicians New MU2 Registration 0 0 Waiting for invitation 0 0 Invited to Onboard 0 0 Onboarding/Testing In Production 5 6 No response within 30 days Inactive Non-Targeted Total Registered Registrations by Specialty Practices Physicians Dermatology Urology 3 3 Hematology/Oncology Other Specialties Last Updated 7/9/

32 FCDS Abstractor Code FCDS IDEA User Account FAA Access FCDS LMS Account Quick Refresher MELISSA WILLIAMS MARK RUDOLPH Why so many codes/accounts? EVERYONE IS SPECIAL 32

33 FCDS IDEA Accounts Login to FCDS IDEA Submit data to FCDS View/change FCDS IDEA access/password FCDS IDEA Account Manager FCDS Access Summary Report Account Manager Access Summary Report 33

34 FCDS Abstractor Code Only used with V15 NAACCR/FCDS data FCDS gets many other types of data that does not need/have FCDS Abstractor codes: Path, RT, Disease Index, 5010, PHINMS, HL7, Physician Claims Your Abstractor Code indicates you are qualified abstractor in the State of Florida, so you must maintain via FCDS LMS system FCDS LMS Account LMS=Learning Management System Completely separate 3 rd party system Separate userid/password system do not re-use passwords from FCDS IDEA or other systems Use same FCDS IDEA address Used for exams associated with getting/maintaining FCDS Abstractor Code 34

35 FAA Access FAA=Facility Access Administrator Special FCDS IDEA account with permissions to give/change other FCDS IDEA access at your facility only The FAA can give you Facility access to your facility data, Death Clearance, QC report Top Problems: Can t remember password or userid Use Reset option on FCDS IDEA 35

36 Top Problems: Can t remember password or userid FCDS LMS Lost Password Top Problems IDEA/LMS not loading/working Try other web browser: Internet Explorer 9+, Firefox 25+, Google Chrome 30+ Re-install free Adobe Flash Player and Reader (only! from Adobe.com, no other site) Clear browser Cache (browser Tools) Clear Flash Cache (Control Panel->Flash- >Storage->Delete) 36

37 Top Problems Expired account! Renew your password extends account for 1 year Abstractor Code Renewal Exam extends your Abstractor Code 1 year Top Problems Where do I change FCDS IDEA Account settings? FCDS IDEA -> IDEA User -> Account Manager Change password, address, , security questions 37

38 FCDS Profile Modification Form Registration of New Facilities Updates to an existing facility/profile. Questions? Password/Account problems contact Melissa Williams at Access to Facility Reports menu items, contact your facility FAA Help with browser problems, uploads, contact Mark Rudolph at 38

39 A Joint Project of the FCRA/ FCDS Task Force The Task Force is a combination of FCRA members and FCDS staff whose main purpose is to provide an easy method of communicating issues between the Cancer Registrars and the Central Registry Direct link is Keep the lines of communication open and work toward Cancer Registry education for all 39

40 A guide to assist anyone exploring the curriculum to become a CTR An organized approach for the motivated self starter adult learner with basic to intermediate level internet skills A tool that a CTR candidate can use to study using important internet sites that Registrars use as well as Cancer Registry books and manuals Our contribution to aiding in the education and training of CTR s as well as promoting our field 40

41 QC Activities Summary 81 F C D S A N N U A L C O N F E R E N C E S T P E T E R S B U R G, F L O R I D A 7 / 2 9 / S T E V E N P E A C E, C T R NPCR Program Standards,

42 FCDS Data Quality Program - Methods FCDS Policy FCDS Abstractor Code Requirement FCDS EDITS Requirement Text Documentation Requirement Deadlines and IT Security FCDS Procedures FCDS IDEA Communication/Transmission FCDS Internal Data Processing Monitoring FORCES/CORRECTIONS/DELETIONS Patient and Tumor Linkage & Consolidation FCDS Monitoring / Audits Audits for Completeness Audits for Timeliness Audits for Accuracy FCDS Data Quality Reports Quarterly/Annual Status Reports Ad Hoc Reports Audit Results 83 Submission Summary & QC Review Sample 84 Description # Cases % of Total Total Cases Submitted to FCDS 1/1/ /31/2014 All Sources 199, % Total Cases NO CHANGE Pass ALL Edits No Visual Review by FC or QC 189, % Total Cases FC Visual Review (FC Review to assess case for possible FORCE) 10, % FORCED (EDIT Override Confirmed and FORCE was set - NOT an error) 4, % CORRECTED (1 or more corrections made based on text NOT a FORCE) 4, % DELETED (duplicate case, not a reportable neoplasm, not a new primary) 1, % Total Cases Every 25 th Case QC Review Sample/Visual Editing Sample includes 4% of analytic hospital, radiation, surgery center cases Sample includes ALL male breast and ALL pediatric cases Sample does not include dermatology or other physician office cases 8, % Total Cases Visually Edited by FCDS in 2014 (combined FC and/or QC Review) 19, % 42

43 QC Review Sample / Visual Editing - Summary 85 Description # Cases % of Total Total Cases Every 25 th Case QC Review Sample/Visual Editing 8, % of Analytic Cases Total Cases NO CHANGE on QC Review 6, % of QC Sample Total Cases Sent to Facility with Correction or Inquiry 2, % of QC Sample Total Cases Sent to Facility with Correction or Inquiry 2, % of QC Sample NO CHANGE after Follow-Back to Facility % FORCED (EDIT Override Confirmed - NOT an error) % CORRECTED (1 or more corrections made NOT a FORCE) 2, % DELETED (duplicate case, not a reportable neoplasm, not a new primary) % AHCA/Mortality Follow-Back Completeness 86 AHCA In-Patient Missed Case - Abstract 3,733 3,772 5,257 4,063 3,480 Abstracted but Not Transmitted Total Missed Cases 4,513 4,439 5,962 4,732 4,112 Not Reportable - NED 5,441 5,920 5,371 5,174 6,024 Not Reportable - Not Malignant 2,984 2,547 2,461 2,348 1,899 Not Reportable - Equivocal 3,377 3,477 3,466 3,396 3,640 Not Reportable - No Mention CA 3,513 3,309 3,164 3,865 4,656 Not Reportable - Other 2,337 2,169 2,112 2,342 2,237 Total Not Reportable 17,652 17,422 16,574 17,125 18,456 F/B Not Done by Facility Total AHCA In-Patient 22,217 21,939 22,972 22,637 23,342 43

44 AHCA/Mortality Follow-Back Completeness 87 AHCA Ambi Missed Case - Abstract 3,742 3,958 6,275 4,338 3,757 Abstracted but Not Transmitted Total Missed Cases 3,768 3,982 6,850 4,836 4,278 Not Reportable - NED 1, ,573 2,573 2,361 Not Reportable - Not Malignant 1,858 1,761 2,599 2, Not Reportable - Equivocal Not Reportable - No Mention CA ,091 Not Reportable - Other 1,372 1,159 2,741 3,061 1,559 Total Not Reportable 4,540 4,078 9,425 9,757 6,302 F/B Not Done by Facility 691 1,009 1,549 2,366 1,304 Total AHCA Ambi 8,999 9,069 17,824 16,959 11,884 New Internal QC Review with Reports 88 44

45 New QC Review Summary Report 89 New QC Review Summary Reports 90 45

46 New QC Review Summary Reports Call for Data NAACCR Summary 92 46

47 2015 Call for Data NPCR DER Report Call for Data NPCR DER Report 94 47

48 2015 Call for Data NPCR DER Report Call for Data NPCR DER Report 96 48

49 Sex Coding Errors 97 Unusual first names Increase over past 5 Years Registrars still not checking Edit Failures will be checked and validated. Easy for Reproductive Cancers but not Colon, Lung, etc. FCDS is borrowing methodology from New York and Alaska that will validate common first names by decade. Sex Coding Errors 98 49

50 2015 FCDS Reporting Requirements and Updates FCDS Annual Conference July 29, 2015 Meg Herna Summary of Changes Three new standard data items to collect AJCC TNM Cancer Staging data items required to collect from CoC facilities only One new reportable neoplasm New codes for existing FCDS data items Heme/Lymph conversion and recodes FCDS EDITS version 15 Metafile updated FCDS DAM/Version 15 record layout updated

51 New Data Items to collect ALL CASES Item Number Item Name 759 SEER Summary Stage 2000 Direct Coded 3170 RX Date Mst Deft Srg 3171 RX Date Mst Deft Srg- Flag 101 AJCC TNM Cancer Staging data items required to collect from CoC facilities ONLY Item Number Item Name 940 Clinical T 950 Clinical N 960 Clinical M 970 Clinical Stage Group 980 Clinical Stage (Prefix/Suffix) Descriptor 990 TNM Clin Staged By 880 Pathologic T 890 Pathologic N 900 Pathologic M 910 Pathologic Stage Group 920 Pathologic Stage (Prefix/Suffix) Descriptor 930 TNM Path Staged By 1060 TNM Edition Number

52 New Reportable Neoplasm Any Carcinoid Tumor of Appendix 8240/3 103 New Codes For Existing FCDS Data Items NAACCR Item 220 Sex Code 4 changed definition 4 Transsexual, NOS Code 5 and 6 added as new 5 Transsexual, natal male 6 Transsexual, natal female NAACCR Item 1251 Rx Date Other Flag Code 15 added as new 15 Other Therapy is planned as part of the first course therapy, but had not been started at the time of the most recent follow-up

53 Heme/Lymph Conversion and Recodes NCI SEER released a revised Hematopoietic Database and Manual Consolidated the 2010 and 2012 databases into one All cases with OBS codes diagnosed 2010 and forward were converted to the new codes Histology conversion Malignant histologies (/3) Reassignment of grade Primary site conversion New edit checks Do not use OBS codes when reporting historical cases Use current coding standards 105 Heme/Lymph OBS Codes Histology Description ICD-O Hodgkin lymphoma, lymphocyte depletion, diffuse fibrosis [OBS] See 9653/3 9654/3 Hodgkin disease, lymphocytic predominance, NOS [OBS] See 9651/3 9657/3 Hodgkin disease, lymphocytic predominance, diffuse [OBS] See 9651/3 9658/3 Hodgkin granuloma [OBS] See 9650/3 9661/3 Hodgkin sarcoma [OBS] See 9650/3 9662/3 Hodgkin lymphoma, nodular sclerosis, cellular phase [OBS] See 9663/3 9664/3 Hodgkin lymphoma, nodular sclerosis, grade 1 [OBS] See 9663/3 9665/3 Hodgkin lymphoma, nodular sclerosis, grade 2 [OBS] See 9663/3 9667/3 Malignant lymphoma, small B lymphocytic, NOS [OBS] See 9823/3 9670/3 Malignant lymphoma, mixed small and large cell, diffuse [OBS] See 9690/3 9675/3 Malignant lymphoma, large B-cell, diffuse, immunoblastic, NOS [OBS] See 9680/3 9684/3 Precursor B-cell lymphoblastic lymphoma [OBS] See 9811/3 9728/3 Precursor T-cell lymphoblastic lymphoma [OBS] See 9837/3 9729/3 Plasma cell leukemia [OBS] See 9732/3 9733/3 Malignant histiocytosis [OBS] See 9751/3 9750/3 Langerhans cell histiocytosis, unifocal [OBS] See 9751/3 9752/3 Langerhans cell histiocytosis, multifocal [OBS] See 9751/3 9753/3 Langerhans cell histiocytosis, disseminated [OBS] See 9751/3 9754/3 Immunoproliferative disease, NOS [OBS] See 9762/3 9760/3 Immunoproliferative small intestinal disease [OBS] See 9762/3 9764/3 Acute biphenotypic leukemia [OBS] See 9809/3 9805/3 Precursor cell lymphoblastic leukemia, NOS [OBS] See 9811/3 9835/3 Precursor B-cell lymphoblastic leukemia [OBS] See 9811/3 9836/3 Chronic myeloproliferative disease, NOS [OBS] See 9975/3 9960/3 Refractory anemia with excess blasts in transformation [OBS] See 9983/3 9984/3 Therapy related myelodysplastic syndrome, NOS [OBS] See 9920/3 9987/

54 FCDS EDITS Metafile v15 Already available Make sure to use the July 1 st file Includes new and revised edits consistent with the new reporting requirements Heme/Lymph edits SEER SS2000 edits Prostate/Grade/CS SSF 8/CS SSF10 edits Sex edits Most Definitive Surgery Date edits TNM valid codes edits only (for now) FCDS Downloads Page at FCDS Data Acquisition Manual Available on the FCDS website FCDS Record Layout updated Revisions will be posted on the FCDS website THANK YOU

55 2014 & 2015 FCDS Data Quality Audits 109 F C D S A N N U A L C O N F E R E N C E S T P E T E R S B U R G, F L O R I D A 7 / 2 9 / S T E V E N P E A C E, C T R 55

56 56

57 57

58 FCDS Data Quality Audit Findings DX Year Audit Summary - Coding Errors

59 2013 Summary Findings - Missing Text 117 General Summary Findings

60 General Summary Findings 119 Future FCDS Audits Kidney and Urinary System 2017 Brain and CNS any behavior 2018 Lung and Pleura 2019 Unknown Primary 2020 Male and Female Genital System 60

61 2014 Jean Byers Award FCDS Annual Meeting July 29 & Jean Byers Award 2014 award for 2012 data awarded in 2015! Criteria for the award: All deadlines met with respect to the 2012 cancer case admissions a Annual Caseload Submission Deadline June 30, 2013 b. Consolidated Follow Back Deadline October 15, 2014 c. No more than 5% (or 35 cases, whichever number is greater) of the 2012 cancer case admissions reported to FCDS within 2 months (60 days) following the June 30, 2013 deadline. d. No more than 10% of the 2012 cancer case admissions reported to FCDS within 12 months following the June 30, 2013 reporting deadline. 61

62 2014 Jean Byers Award Special Recognition These facilities have won the award all 17 years 2736 Baptist Hospital of Pensacola 3903 Brandon Regional Hospital 6203 Edward White Hospital Education & Training Plan FCDS Webcast Series Anatomic Staging Focus 124 F C D S A N N U A L C O N F E R E N C E S T P E T E R S B U R G, F L O R I D A 7 / 2 9 / S T E V E N P E A C E, C T R 62

63 Presentation Outline FCDS Education & Training Plan 125 Education & Training on Staging of Cancer AJCC TNM Stage (clinical and pathologic) SEER Summary Stage 2000 CS SSFs Anatomic Staging Foundation Focus on Major Sites Other Staging and Misc. Education & Training Resources Questions Education & Training Plan FCDS Annual Meeting FCDS Webcast Schedule 126 NAACCR Webinar Schedule NAACCR Webinar Host Sites NAACCR CTR Prep Webinars SEER Summary Stage 2000 AJCC TNM 7 th Edition CS SSFs FCDS Staff In-Services for ALL Field Coordinators and Quality Control Staff FCDS On-Line Educational Resources FCDS Abstractor Code Testing Other Education & Training Resources 63

64 FCDS Annual Meeting FCDS Webcast Schedule 128 Time Date Schedule 3 rd Thursday 1:00pm 8/20/2015 3:00pm 9/17/2015 1:00pm 3:00pm 10/15/2015 1:00pm 3:00pm 11/19/2015 1:00pm 3:00pm Presentation Title December N/A No Webcast Scheduled 1/21/2016 1:00pm 3:00pm 2/18/2016 1:00pm 3:00pm 2015 Reporting Requirements: FCDS Annual Meeting Highlights Lung and Pleural Neoplasms: Background, Anatomy, Risk Factors, Signs and Symptoms, MPH Rules, Anatomic Staging (TNM, SS2000, CS SSFs) and TX Brain and CNS Tumors: Background, Anatomy, Risk Factors, Signs and Symptoms, MPH Rules, Anatomic Staging (TNM, SS2000, CS SSFs) and TX Prostate and Bladder Neoplasms: Background, Anatomy, Risk Factors, Signs and Symptoms, MPH Rules, Anatomic Staging (TNM, SS2000, CS SSFs) and TX Breast Neoplasms: Background, Anatomy, Risk Factors, Signs and Symptoms, MPH Rules, Anatomic Staging (TNM, SS2000, CS SSFs) and TX Colon (incl. Appendix) and Rectum Neoplasms: Background, Anatomy, Risk Factors, Signs and Symptoms, MPH Rules, Anatomic Staging (TNM, SS2000, CS SSFs) and TX 64

65 NAACCR Webinar Schedule 129 Date Time Presentation Title 10/1/ /5/ /3/2015 1/7/2016 2/4/2016 3/3/2016 4/7/2016 5/5/2016 6/2/2016 7/7/2016 8/4/2016 9/1/2016 9:00am - 12:00pm 9:00am - 12:00pm 9:00am - 12:00pm 9:00am - 12:00pm 9:00am - 12:00pm 9:00am - 12:00pm 9:00am - 12:00pm 9:00am - 12:00pm 9:00am - 12:00pm 9:00am - 12:00pm 9:00am - 12:00pm 9:00am - 12:00pm Collecting Cancer Data: Unusual Sites and Histologies Collecting Cancer Data: Pharynx Directly Coded Cancer Stage (AJCC and Summary Stage) Collecting Cancer Data: Bone and Soft Tissue Collecting Cancer Data: Breast Abstracting and Coding Boot Camp: Cancer Case Scenarios Collecting Cancer Data: Ovary Collecting Cancer Data: Kidney Collecting Cancer Data: Prostate Patient Outcomes Collecting Cancer Data: Bladder Coding Pitfalls NAACCR CTR Prep Webinars 130 The NAACCR CTR Exam Preparation & Review Webinar Series offers online instruction with experienced faculty. The course includes eight 2-hour sessions, sample CTR Exam and a follow-up post exam session. All sessions are recorded and available for playback 24/7 via Drop Box. Individual Subscription for the Series is $400 includes live sessions FCDS picks up the $400 fee for any Florida candidate CTR This is NOT a Beginner Abstracting Course Candidate CTRs must be planning towrite the CTR Exam Florida candidate CTRs must view recordings as partof agreement This allows you to watch each session whenever time allows All Course Materials including Sample CTR Exam are included Contact and Feedback from Course Instructors is included Next CTR Exam Prep and Review Series begins in mid-august 65

66 Staging of Cancer 131 Transition Training AWAY from CS to focus on SS2000 and TNM Same Foundation for Anatomic Staging Reinforce Biomarker and Prognostic Indicator Tests Identify Additional Available Resources Concept (How To) Training Identify Additional Available Resources Practice Cases Tap Into National Training Efforts QC of TNM and Summary Stage will begin with 2016 dx/admit FCDS Text Requirements Never More Critical Than Now Why Summary Stage Purpose of Staging Biochemical Tumor Markers Molecular Tumor Markers Genetic Mutations/Variations Risk Stratification Source: SEER Summary Staging Manual

67 AJCC TNM Self-Instruction Modules I-IV AJCC TNM Self-Instruction Modules I-IV

68 AJCC TNM Self-Instruction Modules I-IV AJCC TNM Self-Instruction Modules I-IV

69 AJCC TNM Self-Instruction Modules I-IV Resources for Practice Cases 138 AJCC You Tube Staging Moments free SEER*Educate Website free More than 500 Cases 50 cancer sites FCDS Webcast Series free Practice Cases will be included for most webcasts Will reduce some of the content provided Go To Meeting Poll for Interactive Q&A NCRA Workbook for the Staging of Cancer - $75 Overview of Basic Principles of AJCC TNM Staging System plus Practice Cases 8 Sites - Head & Neck, Colon, Breast, Ovary, Prostate, Testis, Bladder, Lymphoma April Fritz The Cancer Registry CASEbook(s) - $75 each Volume I - Introduction and 5 Sites - Colon, Breast, Lung, Prostate, Bladder Volume II - Challenging Sites - Head & Neck, Female Genital, CNS, Lymphoma 69

70 FCDS Abstractor Code Test & Training Course 139 Review of ALL Q&A and References ALL Collaborative Stage Q&A Removed New SEER Summary Stage 2000 Q&A Added New AJCC TNM Stage Added SSF Q&A will remain Summary Stage 2000 Introduction and General Rules 140 FCDS ANNUAL CONFERENCE S T. P ETERS BU R G, F LORIDA S T E V E N P E A C E, C T R JULY 3 0,

71 Objectives 141 Provide an Overview and Introduction to SEER Summary Stage 2000 concepts; review the format, content, and general instructions for how to use of the SEER Summary Stage 2000 manual; discuss advances in understanding of cancer as a disease process, cancer staging, treatment, imaging and new technologies that have occurred since the release of SEER Summary Stage 2000 that affect staging, but have not yet been incorporated into the SEER Summary Stage 2000 Manual, and discuss future updates and new directions for Summary Stage for Better understand the why of SEER Summary Stage Better understand the how of SEER Summary Stage Better understand the need for a SS2016 Update Instruct registrars on correct use of SS2000 Manual To Download an electronic (PDF) copy of the SEER Summary Stage 2000 Manual go to Required for ALL Cases Abstracted 1/1/2015 and Forward Objectives 142 Organization, Content, and Use Instructions 71

72 Why Summary Stage Basis of Summary Stage has not changed since the 1950s. 143 Basic Concepts of in-situ, local, regional, and distant stage and definitions are frozen in time to allow assessment of long-term trends without edition-to-edition variation that confounds trend analysis using multiple editions as in TNM. Summary Stage applies to every anatomic site, including lymphoid and myeloid neoplasms (lymphoma and leukemia). Summary Stage also can be applied to pediatric cancers. Why Summary Stage Purpose of Staging Biochemical Tumor Markers Molecular Tumor Markers Genetic Mutations/Variations Risk Stratification Source: SEER Summary Staging Manual

73 Scope of Summary Stage 2000 Basic Understanding of How Cancer Spreads Has Not Changed Benign Neoplasm Borderline Malignant Neoplasm Non-Invasive or In-Situ Neoplasm Invasive Neoplasm Local Invasion Loco-Regional Extension Lymphatic System Spread Blood Circulatory System Spread 145 Intracavitary Metastatic Seeding of Tumor Registrars already know how to apply anatomic staging principles. You have been locating and coding anatomic stage information in fine detail for Collaborative Stage. You just need to learn how to use and follow the SS Manual Instructions and Guidelines. Scientific and Technological Progress and the rapid pace of new discovery has forced standardized anatomy-based cancer staging concepts beyond the scope/intent of the original methodology. Limitations 146 Based on tumor, node, metastasis concept for staging cancer Does not incorporate last 15 years of discovery in medicine Cause Histology Not Designed to Accommodate New Proteomics Markers or Disease Characteristics Clinical Factors that effect Treatment Options such Immunophenotype as Neo-Adjuvant Therapies, Risk- Biochemical Markers Based Treatment Options or Stage of Differentiation capturing Multiple Stages of Disease Other Prognostic Factors (i.e. clinical, surgical, neoadjuvant, Molecular Tumor Markers recurrence, re-staging, etc.) Genotype/Genomic Variants Historically Non-Invasive Cancers Had Limited Impact Cancer Screening Factors have changed expected stage at dx Treatment Approach has changed immensely based on other factors Differentiate finer levels of primary tumor extension and nodal involvement More learned to locate and assess sentinel nodes and Lymph Vascular Invasion 73

74 Limitations SS2000 not up-to-date with WHO Classification of Diseases Not all ICD-O-3 histology codes in use are included in SS2000 Instructions to point registrar to correct schema for new codes No new chapters will be added until SS2016 or later publication Backward Comparison Cross-Walks Lose Specificity Over Time SS2000 to SS1977 AJCC TNM *ed. to AJCC TNM *ed. Collaborative Stage to SS1977 Collaborative Stage to SS2000 Collaborative Stage to AJCC TNM 6 th ed. (clin/path) Collaborative Stage to AJCC TNM 7 th ed. (clin/path) Any Stage Directly Coded Compared to Computer-Derived Any Old Staging System Compared to Any New Staging System 147 Limitations 148 TNM and CS have evolved to meet current needs for anatomic staging with refinement of anatomic staging concepts, details, and the addition of new key factors (SSFs) for some cancers. Summary Stage is not and will never be 100% consistent with what is known today about fine details of anatomic staging + SSFs. System limitations and inconsistencies with current staging criteria are well known and are documented. Registrars do not need to debate, challenge or point out where these discrepancies exist. We are not asking you to test the system or to assess the value of SS2000 criteria or the staging system but rather to use it as is. We are working to update staging resources, manuals and instructions based on original core anatomic staging concepts, but with refined, enhanced, corrected, or clarified criteria PLUS the addition of SSF-like data items to code strategic SSFs. Manual Instruction and Revision will be a higher priority than Manual Corrections. 74

75 Navigation Demo 149 Future Vision

76 Future Vision 151 TNM Staging: The Common Language of Cancer or Staging for the Multidisciplinary Health Care Team Donna M. Gress, RHIT, CTR Validating science. Improving patient care. This presentation was supported by the Cooperative Agreement Number DP from The Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of The Centers for Disease Control and Prevention. 76

77 154 How to Use the AJCC Cancer Staging Manual, 7 th ed. FCDS ANNUAL CONFERENCE ST PETERSBURG, FLORIDA JULY 30, 2015 Steven Peace, CTR 77

78 Purchase and Ordering Information Every Abstractor Must Have Access to and Use This Manual AJCC Cancer Staging Manual 7 th edition, 2010 COST: $64.95 ISBN: Required - Florida Mandate FCDS will not purchase Facility may purchase Individual may purchase Also Required to Purchase 8 th Edition in SPRINGER 156 AJCC Staging Manual Organization Part I Chapter 1 Purposes and Principles of Cancer Staging Part I Chapter 2 Cancer Survival Analysis Parts II -- XII are organized by Body System (digestive/gyn/gu/etc.) Each Body System (Part) includes 1 or more Site Chapters 57 Site Chapters Organized by Primary Site and/or Histologic Type Chapters are grouped by Body System (digestive, urinary, etc.) Chapters are organized by Disease Site (Primary Site) Plus a few Histology-Based Chapters (melanoma, Merkel cell, etc.) Alphabetical Index CD-ROM with Printable Staging Forms 78

79 Chapter Outline and Contents 157 Staging at a Glance Changes in Staging Introduction Anatomic Considerations Rules for Classification Prognostic Features Definitions of TNM Anatomic Stage Prognostic Groups Prognostic Factors (SSFs) Grade Histopathologic Type Bibliography Staging Form Summary of anatomic stage/prognostic grouping Table summarizing changes in staging from the 6 th edition Overview of factors affecting staging and outcome o Primary Tumor o Regional lymph nodes o Metastatic sites o Clinical o Pathologic Identification and discussion of non-anatomic prognostic factors T: Primary tumor N: Regional lymph nodes M: Distant metastasis a. Required for staging b. Clinically significant AJCC Cancer Staging Manual, 7 th ed. Chapter 1, Table 1.10, p Neoplasms Not in the AJCC Manual Not all types of cancer are AJCC-stage able. Use the Primary Site Codes listed at the beginning of each chapter in the AJCC Cancer Staging Manual. Use the List of Histopathologic Types in each chapter are toward the end of each chapter and are used as a guide to indicate the cancer types which can be AJCC-staged using that staging scheme. Histologic Types listed as inclusions (or not listed because they are exclusions) for each individual chapter should NOT be AJCC-staged using that chapter. Note: Some chapters are specifically limited to certain cancer types only with a certain anatomic site (such as skin melanomas). Some chapters are specifically limited to certain histologic types regardless of primary site. This site and/or histology limitation does not limit coding for the primary site here. 79

80 159 Neoplasms Not in the AJCC Manual Pediatric cancers are not included in the AJCC Cancer Staging Manual with only a few exceptions. See below for exceptions. These cancers would ordinarily be considered un-stage able in this system. However, if a physician has staged a pediatric case using TNM (clinically or pathologically), then this staging may be coded and unknown codes should be used for any unspecified fields. Exceptions: Musculoskeletal Sites (sarcoma), Lymphoid Neoplasms, Retinoblastoma, and Other Neoplasms of Primary Site and/or Histology where a relevant chapter that would include pediatric cases exists. Neoplasms Not in the AJCC Manual 160 When the primary site is not clear, not specified or unknown. AJCC staging of the cancer should be based on "reasonable clinical certainty" of a primary site identification. You cannot assign TNM to C80.9 or C76.* cases. When there is not "reasonable clinical certainty" indicating one primary site, then the AJCC staging should be "not applicable" (as for an unknown primary site). When a case is assigned a Primary Site Code of body system, NOS that would also include sub-sites such as colon, NOS versus sigmoid colon the case cannot be staged due to lack of specificity of tumor origin or degree of cancer spread from that NOS primary site at diagnosis, including regional lymph nodes. Exception: Histology-based chapters such as Lymphoid Neoplasms 80

81 Other Helpful Information 161 TNM Help AJCC 6 th ed. & 7 th ed. Help Introduction Help Abbreviated Chapter Explanatory Notes Common Questions FREE! The Latest in Cancer News: Screening, Diagnosis, Treatment Trends, Breakthroughs & Milestones 162 F C D S A N N U A L C O N F E R E N C E S T P E T E R S B U R G, F LORIDA J U L Y 3 0, S T E V E N P E A C E, C T R Prevention Diagnosis Treatment Recovery Palliation 81

82 Outline 163 Introduction The End of Privacy Noteworthy Reports & Publications The Over-Diagnosis and Over-Treatment of Cancer Big Data & New Directions in Cancer Data Management Trends in Cancer Screening and Screening Recommendations Next Generation Biomolecular Tumor Markers and Genetic Testing The State of Cancer Care in America 2015 This & That for $1000 Wrap Up Noteworthy Reports & Publications NCI Cancer Trends Progress Report 100% Online Cancer Facts & Figures Special Section: Breast Carcinoma In Situ 2014 Cancer Facts & Figures Special Section: Childhood and Adolescent Cancers Colorectal Cancer Facts & Figures 2015 Annual Report to the Nation on the Status of Cancer Feature: Breast Cancer Subtypes 4 Subtypes by HR/HER2 Status 2014 Annual Report to the Nation on the Status of Cancer Feature: HPV-Associated Cancers and HPV Vaccination Coverage CDC Morbidity and Mortality Weekly Report 3/13/2015 Cancer Incidence/Mortality and Tracking Healthy People 2020 Goals 82

83 more publications The Health Consequences of Smoking 50 Years of Progress Consumer Guide to the Report Executive Summary Full Report 165 Clinical Cancer Advances 2015 ASCO The State of Cancer Care in America ASCO AACR Cancer Progress Report Report on Medicines in Development - PhRMA and Cancer Projecting Cancer Incidence and Deaths to 2030: The Unexpected Burden of Thyroid, Liver and Pancreas Cancers in the United States 2014 Report on Carcinogens National Toxicology Program, 13 th edition Next Generation: Gene Expression Profiling 166 TECHNIQUES include Real Time PCR, MicroRNA analysis, DNA Microarray technology or sequenced-based techniques such as Serial Analysis of Gene Expression and DNA or RNA Sequencing. RT-PCR is currently the gold standard and several commercial products are available such as the Oncotype DX assays which analyze the expression of a panel of 21 genes from a tumor specimen. DNA Microarray - DNA probes attached to glass to create a chip or array of microscopic spots of pre-defined DNA oligonucleotides specifically targeted to identify complementary DNA in a specimen. RNA-Sequencing is superior to microarray (no pre-selected probes ). SuperSAGE is highly accurate and can measure any active gene, not just a pre-defined set. Unfortunately, many genes are always active. FUTURE: Standardized testing that will soon allow registrars to begin to capture standardized results and standardized interpretation of results. Current Oncology (2014; doi: /co ) 83

84 Next Generation: Gene Expression Profiling 167 HOWEVER Few techniques/tests have been standardized, they are expensive but getting cheaper, and the results and interpretation of results varies widely depending upon array, specialty and experience. The size and complexity of gene expression profile testing results in a wide variety of possible interpretations still experimental technique(s). Testing is performed under experimental conditions not real world. Analyzing expression profiling results often takes far more time, effort and specific interpretative expertise than performing available alternate but less accurate proteomic mass spectrometry testing or standard prognostic testing. Few people understand the biological significance of each regulated gene. GEP Testing does not replace standard prognostic information. Testing is being done and results used incorrectly to elucidate treatment options, despite confusion over how to interpret tests and their validity, reproducibility, and application to inform. GEP Testing does add a new piece to an increasingly complex puzzle. Current Oncology (2014; doi: /co ) Proprietary Genetic Assay Tests 168 Oncotype DX Early stage hormone receptor + invasive Breast Cancer Assesses risk for recurrence of DCIS/new primary Assesses risk for recurrence Examines 21 Genes Cost - $4,000 MammaPrint Early stage hormone receptor + or invasive Breast Cancer Assesses risk for recurrence Examines 70 Genes MammoStrat Early stage hormone receptor + or invasive Breast Cancer Assesses risk for recurrence Examines 5 Genes Prosigna Breast Cancer Prognostic Gene Signature Assay (PAM50) Early stage hormone receptor + invasive Breast Cancer Assesses risk for recurrence Examines 58 Genes 84

85 Fast DNA Sequencing Machines Lead to New Tests 169 Liquid Biopsy IDs Cell-Free Tumor DNA Strands in Circulating Blood Cancers and DNA Mutations Cells Die Leaving Trace DNA Trace DNA Acts as Target 100s of Mutations Checked DNA Composite is Bar-Code Target Used for Diagnosis Target Used for Treatment Target Used for Monitoring Mutations Change Over Time This and That: Registry Data Limitations

86 This and That: Expectations for the Registry Increased Research Capacity Improved Healthcare Metrics Quality of Care Monitoring Performance Monitoring Rapid Reporting Direct Access to EHR/EMR Meaningful Use Data E-Claims E-Path E-Labs E-Tumor Markers E-Genetics Testing E-Specialty Testing Recurrence/Progression Subsequent Treatment(s) Ensure Patient Privacy Ensure Data Security 171 Wrap Up

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