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5th Annual Early Age Onset Colorectal Cancer - Session I

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EAOCRC Summit Framing the Conversation: Strategic Challenges in Current Medical Care that Contribute to Young Adult Colorectal Cancer (CRC) Incidence and Mortality. Session I - The Dimensions of the EAOCRC Problem.

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5th Annual Early Age Onset Colorectal Cancer - Session I

  1. 1. 1. Survivor Introductory Comments Frame EAO-CRC 2019 2. Progress 2018 3. Applying EAO-CRC 2019 to Reducing Young Adult CRC Incidence and Mortality Thomas Weber, MD FACS Professor of Surgery and Epidemiology Donald & Barbara Zucker School of Medicine at Hofstra / Northwell Director, Surgical Oncology, Northwest Region Northwell Health, NY, USA
  2. 2. 1. Survivor Introductory Comments Frame EAO-CRC 2019 2. Progress 2018 3. Applying EAO-CRC 2019 to Reducing Young Adult CRC Incidence and Mortality Thomas Weber, MD FACS Professor of Surgery and Epidemiology Donald & Barbara Zucker School of Medicine at Hofstra / Northwell Director, Surgical Oncology, Northwest Region Northwell Health, NY, USA
  3. 3. 1. Survivor Introductory Comments Frame EAO-CRC 2019 2. Progress 2018 3. Applying EAO-CRC 2019 to Reducing Young Adult CRC Incidence and Mortality • Survivor Survey Results • NCCRT Risk Assessment Tool Kit : Implementation Progress • Report on the NCCRT, Colon Cancer Foundation, EIF Bethesda Strategic Retreat. Jan Lowery PhD. • American Cancer Society Revised (Earlier Age) CRC Screening Guidelines. Robert Smith, PhD ACS • NCI and International funded EAO Research Initiatives • Novel Causation Research Initiatives • EAO-CRC 2019 Action Plan & Network
  4. 4. 1. Survivor Introductory Comments Frame EAO-CRC 2019 2. Progress 2018 3. Applying EAO-CRC 2019 to Reducing Young Adult CRC Incidence and Mortality • A Strategic Shift! A Change in Tone. • EAO-CRC 2019 as a Road Map / Blue Print for Action & Progress. • As You Review Each Section of the Program; You Can See; Each of the Primary Components of an Effective, Successful EAO-CRC Prevention, Earliest Possible Diagnosis, Optimal Fertility Preserving Treatment and Causation Research Program are Presented. • An Academic Step Up: Submission, Review and Presentation of Original Research Posters. Susan Peterson PhD • You will also see in your folders the “National Clinical Alert: Young Adult Colorectal Cancer”. A set of Guidelines for Providers, Institutions and Health Care Systems to Use to Effectively Address the EAO-CRC Problem. This document “Alerts” Providers to the EAO-CRC problem and provides clear guidance on how to effectively address the problem and save lives. Presented By Drs. Albert, Boet, Jones and Erin Peterson. This will be published and promoted nationally / internationally • There will also be a Published Report of the proceedings of EAO-CRC 2019. • We will launch the EAO-CRC Action NetworkTM • Pretty much everything YOU, Your Hospital and the NATION needs to organize an effective EAO-CRC Prevention, Earliest Possible Diagnosis, Age Appropriate Treatment and Causation Research Program is outlined here. • So, take notes, ask questions, go forth and do what needs to be done and stay in touch! There is strength and increased probability of success in numbers.
  5. 5. 57
  6. 6. 58 ACCREDITATION This live activity has been planned and implemented in accordance with the Essential Areas and Policies of the Accreditation Council for Continuing Medical Education through the joint sponsorship of Northwell Health and The Colon Cancer Foundation. Northwell Health is accredited by the Accreditation Council for Continuing Medical Education to provide Continuing Medical Education for physicians. CREDIT DESIGNATION Northwell Health designates this live Educational activity for a maximum of 11.0 AMA PRA Category I credits TM. Physicians should only claim credit commensurate with the extent of their participation in the activity. Northwell Health
  7. 7. 59 SIGN-IN To receive either CME or Verification of Attendance Certificates, you must sign in at the registration desk. Please make sure to verify your correct email address. Please note that if you leave early, you can only claim credit for the number of hours you actually attend.
  8. 8. 60 EVALUATIONS AND OUTCOMES SURVEY Evaluations and the 3 month post activity outcomes survey for this activity will be conducted through Survey Monkey. Please look for the email that will have the link to the survey. Your cooperation in completing the survey in a timely manner will be appreciated. Once the evaluation is completed, you will be routed to your CME certificate. Please be sure that you have provided the correct email address for the survey.
  9. 9. 61 DISCLOSURE POLICY Northwell Health adheres to the ACCME’s Standards for Commercial Support. Any individuals in a position to control the content of a CME activity, including faculty, planners, reviewers or others are required to disclose all financial relationships with commercial interests. All relevant conflicts of interest will be resolved prior to the commencement of the activity.
  10. 10. 62 FACULTY DISCLOSURES The following faculty, moderators, planners and managers have nothing to disclose: NAME ROLE IN ACTIVITY Andrew Albert MD, MPH Presenter Irit Ben- Aharon MD, PhD Presenter Semir Beyaz PhD Presenter Chelsea Boet MD Presenter Jennifer Brown PhD Presenter Yin Cao MPH, ScD, MPH Presenter Tabitha Cavanagh Presenter Andrea Cercek MD Presenter Zana Correa NP Presenter Sarah Debord Presenter
  11. 11. 63 FACULTY DISCLOSURES The following faculty, moderators, planners and managers have nothing to disclose: NAME ROLE IN ACTIVITY James T. D'Olimpio MD, FACP, FAAHPM Moderator Cathy Eng MD, FACP, FASCO Presenter Andy Eshe MD, MBA Presenter Karen Fasciano PsyD Presenter Gregory Feero MD, PhD Moderator Tony Foleno Presenter Kevin Hays DDS, PhD, MPH Presenter Richard Hayes Presenter Wes Hensel MD Presenter Steven H. Itzkowitz MD Presenter
  12. 12. 64 FACULTY DISCLOSURES The following faculty, moderators, planners and managers have nothing to disclose: NAME ROLE IN ACTIVITY Whitney Jones Moderator Jordan Karlitz Presenter Noah D Kauff Moderator Sayoni Lahiri MS, CGC Presenter Xavier Llor MD, PhD Presenter Jan Lowery PhD Presenter Christine L. Molmenti PhD, MPH Presenter Kimmie Ng MD, MPH Presenter Nicole Noyes MD Presenter Jose Perea MD, PhD Presenter Susan Pfau MA Presenter
  13. 13. 65 FACULTY DISCLOSURES The following faculty, moderators, planners and managers have nothing to disclose: NAME ROLE IN ACTIVITY Erin Peterson Presenter Eric Reddy Presenter Rebecca L. Siegel MPH Presenter Robert Smith Presenter Diana Sloan Presenter Zsofia Stadler Presenter Elena Stoffel MD, MPH Presenter Denelle Suranski Presenter Kana Wu MD, PhD Presenter Susan Wyzoki Presenter Ronit Yardin PhD, MHSA Presenter Matthew B. Yurgelun MD Presenter
  14. 14. 66 FACULTY DISCLOSURES The following reviewers, planners and managers have nothing to disclose: NAME ROLE IN ACTIVITY Richard Barakat MD Planning Committee Wasif Saif MD Course Co-Director Cindy Borassi Planning Committee Susan K. Peterson MS, LGC Course Co-Director Thomas Weber MD, FACS Course Director Mary B. Strong MA Planning Committee Krista Nelson LCSW, OSW-C, BCD, FAOSW Planning Committee
  15. 15. 67 FACULTY DISCLOSURES Dennis Ahmen, MD, AGAF, FACG – Moderator/Presenter Discloses that he receives honorarium from Ambry Genetics for speaking and receives honoraria from Cancer Prevention Pharmaceuticals as a member of their Data and Safety Monitoring Committee Jordan Karlitz, MD, FACG Discloses that he receives honorarium from Exact Sciences as an Advisor and honorarium from Myriad Genetics for consulting services and as a member of their speakers bureau. C. Richard Boland, MD – Presenter Discloses that he receives financial support from Ambry Genetics for teaching. Whitney Jones, MD – Moderator Discloses that she receives honoraria and consulting fees as a speaker for Myriad Genetics.
  16. 16. 68 FACULTY DISCLOSURES Zsofia K. Stadler, MD Discloses that her spouse has a consultant/advisory role with Allergan, Adverum Biotechnologies, Alimera Sciences, Biomarin, Fortress Biotech, Genentech, Novartis, Optos, Regeneron, Regenxbio and Spark Therapeutics. Heather Hampel, MS, LGC – Moderator Discloses that she receives grant research support as a PI from Myriad Genetics, honoraria from Beacon LBS as a Consultant, receives honoraria and is a stock/shareholder as an Advisory Board Member for Genome Medical. She also receives honoraria from Invitae as an Advisory Board Member. Noah D. Kauff, MD Discloses that he honoraria from BGI for giving lectures, consulting fees from AstraZeneca as PI and consulting fees from Merck as PI.
  17. 17. 69 Acknowledgements The Colon Cancer Foundation and Northwell Health gratefully acknowledge the exhibit sponsorship provided to support this activity by: The Northwell Health Cancer Institute
  18. 18. 70 Acknowledgements The Colon Cancer Foundation and Northwell Health gratefully acknowledge the exhibit sponsorship provided to support this activity by: LUC WALTER
  19. 19. 71 Acknowledgements The Colon Cancer Foundation and Northwell Health gratefully acknowledges the exhibit sponsorship provided to support this activity by: BRACCO DIAGNOSTICS
  20. 20. 72 Acknowledgements The Colon Cancer Foundation and Northwell Health gratefully acknowledges the exhibit sponsorship provided to support this activity by: never too young Colorectal Cancer Alliance
  21. 21. 73 Acknowledgements The Colon Cancer Foundation and Northwell Health gratefully acknowledge the exhibit sponsorship provided to support this activity by: ` Advanced Surgery Center of Long Island Advanced Endoscopy Center Colon Cancer Coalition Carnegie Hill Endoscopy The Endoscopy Center of New York Epigenomics/Epi pro colon
  22. 22. 74 Acknowledgements The Colon Cancer Foundation and Northwell Health gratefully acknowledge the exhibit sponsorship provided to support this activity by: East Side Endoscopy Liberty Endoscopy Manhattan Endoscopy Merck Myriad Physicians Endoscopy Quest Diagnostics
  23. 23. 75 Acknowledgements The Colon Cancer Foundation and Northwell Health gratefully acknowledge the exhibit sponsorship provided to support this activity by: AliveAndKickn Boston Scientific Medtronic Olympus
  24. 24. 76 COURTESY REMINDER Please set cell phones and electronic devices to silent mode, or turn them OFF. WIFI Network: Marmorino Password: orange21 There are few outlets throughout the building so to help keep everyone connected we have set up a charging station outside the auditorium near the snack station.
  25. 25. 77 COURTESY REMINDER You have a printed Agenda in your folder as well as a digital Course Journal online which includes the Agenda, Faculty Bios and a Summary of the abstracts. It can be found at https://coloncancerfoundation.org/agenda We will be following this agenda very closely and ask our distinguished faculty to be aware of the time clock at the back of the room and the signs that will be held up to remind you of your time remaining. If you run over you will hear progressively louder reminders that your time is UP! We also ask our phenomenal participants to be mindful of the time and duration of breaks/lunch and to do their best to make it back to their seats on time. We welcome the entire audience, Faculty, Exhibitors and Participants, to be thoroughly engaged in the Strategic Planning Discussions following each Session and on Day 2. Your opinion matters! Bathrooms are located down the stairs and to the right.
  26. 26. 78 •Thank You!
  27. 27. International Colon Cancer (C18) Incidence Trends to 2015: Ages 20-49? Cancer Incidence in 5 Continents, International Association of Cancer Registries and the International Agency for Research on Cancer Thomas Weber, MD FACS Professor of Surgery and Epidemiology Donald & Barbara Zucker School of Medicine at Hofstra / Northwell Director, Surgical Oncology, Northwest Region Northwell Health, NY, USA
  28. 28. International Colon Cancer (C18) Incidence Trends to 2014? Ages 20-49 Cancer Incidence in 5 Continents, International Association of Cancer Registries and the International Agency for Research on Cancer
  29. 29. What is the Global CRC Situation? & What Can We learn From That Data?
  30. 30. • “Understanding the current patterns of CRC presentation and its evolution from an International Perspective is imperative in order to direct future prospects of reducing the burden through cancer prevention and care”
  31. 31. Ages 20-49
  32. 32. Ages 20-49
  33. 33. Ages 20-49
  34. 34. Ages 20-49
  35. 35. Ages 20-49
  36. 36. Ages 20-49
  37. 37. Ages 20-49
  38. 38. Thank You!
  39. 39. 93 Patterns and trends in early-onset colorectal cancer in the United States Rebecca Siegel, MPH EAO CRC Summit May 2, 2019
  40. 40. Trends in CRC incidence by age, 1975-2016 50+ years 0 50 100 150 200 250 300 1975 1980 1985 1990 1995 2000 2005 2010 2015 Casesper100,000 Year of diagnosis 20-49 years 0 3 6 9 12 15 1975 1980 1985 1990 1995 2000 2005 2010 2015 Year of diagnosis Men Men Women Women
  41. 41. 95 Generational changes in age-standardized CRC incidence Rectum: IRR=4.3 (95% CI, 2.2-8.5) Colon: IRR=2.4 (95% CI, 1.1-5.2) Incidencerateratio(IRR)vs1950 Siegel et al. JNCI 2017
  42. 42. State variation in early-onset CRC in the U.S., 1995-2015 96 Data sources North American Association of Central Cancer Registries (47 states), 1995-2015 Behavioral Risk Factor Surveillance System, 1995-2005 Population Adults aged 20-49 years stratified by race/ethnicity Measures State-level changes in  CRC incidence, 2006-2015  Obesity prevalence (BMI>30 kg/m2)  Heavy alcohol consumption (>14 and >7 drinks/week in men and women, respectively)
  43. 43. Colon 1 9 9 5 1 9 9 9 2 0 0 3 2 0 0 7 2 0 1 1 2 0 1 5 2 4 6 8 1 0 1 9 9 5 1 9 9 9 2 0 0 3 2 0 0 7 2 0 1 1 2 0 1 5 2 4 6 8 1 0 1 9 9 5 1 9 9 9 2 0 0 3 2 0 0 7 2 0 1 1 2 0 1 5 2 4 6 8 1 0 1 9 9 5 1 9 9 9 2 0 0 3 2 0 0 7 2 0 1 1 2 0 1 5 2 4 6 8 1 0 1995-2001, APC =2.2* 2001-2013, APC = 1.0* 2013-2015, APC = 3.7* 1995-1999, APC = 4.4* 1999-2015, APC = -0.4* 1995-2003, APC = 2.0* 2003-2015, APC = -0.2 1995-2015, APC = -0.1 Rectum 1 9 9 5 1 9 9 9 2 0 0 3 2 0 0 7 2 0 1 1 2 0 1 5 2 4 6 8 1 0 1 9 9 5 1 9 9 9 2 0 0 3 2 0 0 7 2 0 1 1 2 0 1 5 2 4 6 8 1 0 1 9 9 5 1 9 9 9 2 0 0 3 2 0 0 7 2 0 1 1 2 0 1 5 2 4 6 8 1 0 1 9 9 5 1 9 9 9 2 0 0 3 2 0 0 7 2 0 1 1 2 0 1 5 2 4 6 8 1 0 1995-2000, APC = 5.1* 2000-2015, APC = 2.1* 1995-2015, APC = 1.1* 1995 -2015, APC = 1.2* 1995-2015, APC = 0.4 Casesper100,000Casesper100,000 Asian/Pacific Islander Non-Hispanic Black Hispanic Non-Hispanic White Early-onset CRC trends by race/ethnicity, 1995-2015
  44. 44. 98 Early-onset CRC incidence rates by state, NHW, 2011-2015 14.3 8.7 DC, 8.2 Incidence rates are per 100,000 population and age-standardized.
  45. 45. Changes in Early-onset CRC incidence by state, NHW, 2006-2015 AAPC=Average annual percent change in incidence rates during 2006 to 2015 40/47 states
  46. 46. 0 1 2 3 4 5 6 7 8 1995 2000 2005 2010 2015 Casesper100,000 Year of diagnosis Colorado Colon AAPC, 4.2 Convergence of colon & rectal cancer rates in NHWs AAPC, 1.5 Rectum Nevada Utah
  47. 47. 101 Are changes in obesity correlated with changes in CRC? Obesity 1995  2005 vs CRC 2006  2015
  48. 48. October 11, 2018
  49. 49. 103 Murphy et al. Gastroenterology 2017 “There's also a scenario in which this seemingly glum cancer trend is in fact good news.” Richard Harris, National Public Radio, Feb 2017
  50. 50. Are temporal trends in colonoscopy use concordant with CRC incidence in young adults? 104 Data sources National Health Interview Survey, 2000-2015 Surveillance, Epidemiology, & End Results Program, 2000-2015 Population Adults aged 40-49 years Measures Changes in  past-year colonoscopy use  CRC incidence
  51. 51. Past-year colonoscopy, ages 40-49 yrs, 2000-2015 105 0 2 4 6 8 10 12 14 16 18 20 40-44 years 45-49 years Prevalence 2000 2003 2005 2008 2010 2013 2015 2015 vs 2000 (absolute diff) 0.1, p=0.77 2.7, p<0.001
  52. 52. 106 Casesper100,000 APC, 1.7* APC, 1.1* CRC incidence, ages 40-49 yrs, 2000-2015 40-44 years 45-49 years *Annual percent change is statistically significantly different from zero (P<0.05)
  53. 53. Early-onset CRC by stage at diagnosis 40-44 years 45-49 years Localized APC, 1.1* Distant APC, 2.9* Localized APC, 0.4 Distant APC, 2.3* *Annual percent change is statistically significantly different from zero (P<0.05)
  54. 54. 108 Trend in CRC mortality among adults 20-49 yrs, 1970-2017 Year of death Deathsper100,000 2004-2017 APC, 1.3* Year of death 2004-2017 APC, 1.8* All races White *Annual percent change is statistically significantly different from zero (P<0.05)
  55. 55. Summary & Conclusion • Increase in CRC malignancies due to changes in exposure in addition to obesity and alcohol? • Steepest increase:  Youngest generations  Rectum  Non-Hispanic whites  Western states – healthier lifestyles • Highest rates in the South 3,600 CRC deaths in people 20-49 years in 2017
  56. 56. 110 Acknowledgements Ahmedin Jemal, DVM, PhD Stacey Fedewa, PhD Genet Medhanie, DVM, PhD Kim Miller, MPH
  57. 57. 111 Thank you!
  58. 58. Utilization of CDC Comparative Effectiveness Research Data to Assess Lynch Syndrome Screening Practices and Surgical Management in Early-onset Colorectal Cancer Jordan J. Karlitz, MD Associate Professor of Medicine Director, GI Hereditary Cancer and Genetics Program Division of Gastroenterology, Tulane University School of Medicine
  59. 59. Disclosures • Advisor Exact Sciences • Consultant and Speaker’s Bureau Myriad Genetics
  60. 60. Objectives – Review components CDC Comparative Effectiveness Research (CER) Data set • Potential utility in using CER data to study EOCRC, understand rising EOCRC rates etc. – Example of using CER data to understand population-based Lynch Syndrome screening and surgical management practices • Highlights detailed/granular nature of CER data set
  61. 61. CER Data Overview • CER definition: – “The generation and synthesis of evidence that compares the benefits and harms of alternative methods to prevent, diagnose, treat, and monitor a clinical condition or improve the delivery of care” • Funding available to CDC for data collection in 2011 only • CDC established 10 specialized registries within National Program of Cancer Registries (NPCR) to participate • AK, CO, ID, LA, NH, NC, RI, TX, CA (parts), FL (parts) • Focused on 4 cancers—breast, colon, rectum and CML • CER=largest and most comprehensive data collection effort by population-based registries in the U.S. Chen, V.W., et al., Enhancing Cancer Registry Data for Comparative Effectiveness Research (CER) Project: Overview and Methodology. J Registry Manag, 2014. 41(3):103-12.
  62. 62. CER Data Overview • CER: – enhanced data collection (compared to usual registry practice) of cancer treatment, biomarkers (KRAS, MSI etc.), height, weight, smoking status, comorbidities, insurance coverage, income level etc. • Training provided by CDC to state registries and registry abstractors to standardize data collection processes • Hospital registrars, or central registry abstractors who directly visited facilities, collected data and fed back to state registry • Data collected from hospital and out-of-hospital sites
  63. 63. CER Data Overview • 75,042 cancer patients • 64.6% breast cancer, 24.5% colon cancer, 9.5% rectal cancer, 1.4% CML • Colon cancer 18,143 cases • Rectal cancer 7,129 cases • 1709 colon cancer patients <50 • 1049 rectal cancer patients <50
  64. 64. Example of CER dataset utilization LA incidence 46.5/100,000 (4th highest in U.S.) U.S. incidence 39.2/100,000
  65. 65. Colorectal Cancer Incidence Rate: Louisiana, 2010-2014 Age 50-74 Created by Louisiana Tumor Registry, 03/01/2017. Standardized Incidence Ratio is calculated as the incidence rate in the local area relative to the state-wide rate for a 5-year period. They are age-adjusted according to US standard 2000 population. This map shows the SIRs for 1148 overlapping circular areas centered on the census tract centroids and each area contains around 20,000 populations and at least 21 cases. Standardized Incidence Ratio (SIR) Percentile Rank (1148 census tracts) <=11% percentile (0.8) <=22% percentile (0.88) <=33% percentile (0.92) 34%-66% percentile >=67% percentile (1.04) >=78% percentile (1.1) >=89% percentile (1.19) Acadian Region (? Lynch syndrome founder effect) Geospatial Analysis, Census Tract Analysis: LTR Data -Incidence rate in local area compared to statewide rate -1148 census tracts vs 64 parishes
  66. 66. Lynch Syndrome • 1:300 in U.S. mutation carriers, many undiagnosed (> 1 million people) • Autosomal Dominant, up to 80% lifetime risk of CRC • Tumor testing with MSI and/or IHC https://www.cancer.net/cancer-types/lynch-syndrome
  67. 67. Use CER data to assess abnormal MSI/IHC test results in Acadian Region • Biomarker data existed, but testing rates so low that would not help understand potential hereditary burden of CRC in region • Shift gears and study population-based testing practices in Louisiana (quality of care)
  68. 68. Underutilization of LS Screening with MSI/IHC
  69. 69. Underutilization of LS screening • CDC CER Data focused on Louisiana Tumor Registry • First population-based study examining LS screening practices in U.S. • All patients ≤ age 50 in Louisiana diagnosed with CRC in 2011 (274 patients) • Care at 61 distinct health care facilities • LS screening rate with MSI and/or IHC only 23% (should be 100%) Karlitz JJ et al: Population-based Lynch Syndrome screening by microsatellite instability in patients ≤50: prevalence, testing determinants, and result availability prior to colon surgery. Am J Gastroenterol. 2015 Jul;110(7):948-55
  70. 70. Variables associated with the ordering of MSI and/or IHC testing % Testing Unadjusted OR Adjusted OR Hospital Type THCP 16.7% *0.30 (0.11-0.77) 0.55 (0.18-1.63) COMP 40.4% Ref Ref CHCP 17.0% *0.31 (0.10-0.83) 0.62 (0.20-1.88) Public 6.5% *0.10 (0.01-0.48) *0.17 (0.04-0.77) Non-CoC/Non- Public 24.7% 0.49 (0.22-1.07) 0.92 (0.39-2.17) 1st Degree relative CRC Yes 48.0% *2.98 (1.21-7.33) *2.76 (1.03-7.40) No 23.6% ref ref CHCP, community hospital cancer program CoC, Commission on Cancer COMP, community hospital comprehensive cancer program THCP, teaching hospital cancer program
  71. 71. Variables associated with the ordering of MSI and/or IHC testing % Testing Unadjusted OR Adjusted OR Region Region 1 16.4% Ref Ref Region 2 35.1% *2.76 (1.24-6.16) *2.88 (1.13-7.35) Region 3 19.5% 1.24 (0.57-2.69) 1.67 (0.67-4.13) Urban/Rural Urban 25.9% Ref Ref Rural 12.3% *0.40 (0.19-0.87) 0.49(0.21-1.12) Region 1=Includes state’s academic medical centers and surrounding areas (12 parish region) Region 2=State capital region and surrounding areas (11 parish region) (Pennington Biomedical Research Center-genomics focus). Region 3=All other parishes in Louisiana
  72. 72. Timing of MSI/IHC testing • Preoperative testing on colonoscopy biopsy specimen (as opposed to CRC surgical resection) can help guide germline testing and extent of colonic resection • High metachronous CRC rates in LS in segmental resection • If MSI/IHC done on surgical resection specimen, results return after operation (no opportunity for risk/benefit discussion of extent of surgery)
  73. 73. Timing of MSI/IHC testing • MSI and/or IHC results available preoperatively in only 16.9% of cases. –Testing ordered on colonoscopy specimen only 34.9% of the time –Even if done on colonoscopy, some patients go to OR without waiting for results to return –Ordered on surgical specimen 61.9% of the time
  74. 74. IHC results - Of the 60 patients tested for MSI and/or IHC who had available results, 13 out of 60 patients (21.7%) had abnormal results. - Of the 8 patients with abnormal IHC, 7 (87.5%) had a pattern that would be consistent with LS
  75. 75. Extended Colonic Resection Study Karlitz JJ et al. Factor Associated with the Performance of Extended Colonic Resection vs. Segmental Resection in Early-Onset Colorectal Cancer: A Population-based Study. Clinical Transl Gastro, 2016.
  76. 76. Results • Same early-onset cohort in Louisiana. • Only 6.8% underwent extended colonic resection (ECR). • ECR not associated with abnormal MSI/IHC results. – Abnormal test results most commonly available post-operatively so do not know LS risk pre-op. • ECR associated with polyposis and age < 45.
  77. 77. 2018-National Survey of GIs Through ACG Mailing List-Why are MSI/IHC Testing Rates So Low? Use LA CER data as a jumping off point to understand what is happening nationally. Noll A, Parekh PJ, Zhou M, Weber TK, Ahnen D, Wu XC, Karlitz JJ. Barriers to Lynch Syndrome Testing and Preoperative Result Availability in Early-onset Colorectal Cancer: A National Physician Survey Study Clinical Transl Gastro, October 2018.
  78. 78. Goals of Study • What are barriers to ordering MSI/IHC? • What are barriers to preoperative result availability? • 5786 confirmed ACG questionnaire recipients by email. • 509 took survey (8.7% response rate).
  79. 79. Barriers to Test Ordering • Cost of testing (33.3%). • Unfamiliarity interpreting results (29.2%). • Unavailable genetic counseling (24.9%). • Non-academic and rural settings associated with cost and genetic counseling barriers.
  80. 80. Inconsistencies in who is felt should order MSI/IHC may lead to diffusion of responsibility, preventing consistent testing (assume others ordering when they are not)
  81. 81. Conclusions • SEER data used to identify high-risk Acadian population (? Lynch syndrome founder effect) • CER data unable to be used to understand potential genomic burden due to low MSI/IHC testing rates • CER data able to be used to obtain granular understanding of Lynch syndrome management practices on a population-based level (testing rates, surgical management) • Potential future applications of utilizing CER data set to be understand EOCRC (2011 data on 2758 CRC patients <50)
  82. 82. Overview of European Cancer Registries Data Resources: Early Onset CRC Irit Ben-Aharon MD, PhD Head, Division of Oncology Rambam Health Care Campus, Haifa, Israel Head, Young-onset Task Force, GI Group, EORTC
  83. 83. Disclosure: None
  84. 84. Statistics: Digestive tract Cancer Long-Term Trends in SEER Incidence Rates, 1975-2015 <50y http://seer.cancer.gov/statfacts/html/ Colorectal Cancer Long-Term Trends in SEER Incidence Rates, 2000-2015 <50y
  85. 85. • ENCR – European, Network of Cancer Registries Network since 1990, collaboration between cancer registries Cancer incidence and mortality in Europe • WHO – World Health Organization
  86. 86. Nordic cancer registries NORDCAN Norway Denmark
  87. 87. Netherlands
  88. 88. France
  89. 89. United Kingdom
  90. 90. Germany
  91. 91. Czech Republic
  92. 92. Italy
  93. 93. Spain
  94. 94. Turkey
  95. 95. Israel
  96. 96. China
  97. 97. Japan
  98. 98. Conclusions: The trend observed is not homogenous:  Increased incidence in Western Europe  Mixed trends in Middle Europe  Stable trend in Mediterranean countries  Stable trends in the Far East
  99. 99.  Obesity  Antibiotic use  Diet?  Ethnicity? Potential contributors: What is the role of epigenetic modifications?
  100. 100. Thank you
  101. 101. Survey of Young-Onset Patients, Survivors, and Caregivers: Self- Reported Clinical, Psychosocial, Financial and Quality of Life Experiences Ronit Yarden, PhD, MHSA Director of Medical Affairs
  102. 102. Patients’ Demographics Patient and Survivor Characteristics N=1195 Sex (No.) Females 976 Males 219 Type of Cancer Colon Cancer 875 Rectal Cancer 315 Race / Ethnicity (No.) White Caucasians 1045 Hispanic / Latino 60 African Americans 49 Asians / Pacific Islanders 23 Native Americans 14 Others 4 Age at Diagnosis (No.) <20 5 20-29 112 30-39 393 40-49 684 US=1090
  103. 103. Patients’ Reported Symptoms and Their Duration Prior to Diagnosis%ofPatients Time Before Reaching Out to a Physician
  104. 104. Saw 1 Dr. 33% Saw 2 Drs. 40% Saw 3 Drs. 16% Saw 4 Drs. or more 11% 67% Young-Onset Patients Visited Multiple Physicians Prior to Diagnosis 17% ER 50% Misdiagnosed 0 10 20 30 40 50 %ofPatientsandSurvivors p<0.001 p<0.03 p<0.01 p<0.009 20-29 20-29 30-39 30-39 40-49 40-49 >3 physicians >4 physicians Number of Physicians Prior to Diagnosis
  105. 105. Young-Onset Patients’ Ethnicity and Their Diagnosis 1 2 3 4 0 10 20 30 40 50 Number of Physician Prior to Diagnosis %ofPatientsandSurvivors Caucasians Hispanic/Latino African Americans C aucasiansH ispanic/Latino A frican A m ericans 0 10 20 30 40 Diagnosed in the ER %ofPatientsandSurvivors 18% 25% 32.0% P<0.0001
  106. 106. Young-Onset Patients were Diagnosed in Late Stages of the Disease % of Patients Diagnosed in Each Stage 0.0 0.1 0.2 0.3 0.4 Frequency Stage at Diagnosis I II III IV p<0.03 p<0.001 p<0.0001 Proportion of Patients That Had to See More Than 3 Physicians
  107. 107. Most Common Misdiagnoses Reported by Young-Onset Patients “I was told I had colitis due to stress” “I was told I am depressed (by a male doctor) because I had no children. I was not….” H em orrhoidsIB S/IB DA nem ia D iverticulitis G ynecologicalissues Post-C hildbirth sym ptom s A ppendicitis O ther 0 100 200 300 NumberofPatients
  108. 108. Patients’ Reported Quality of Life
  109. 109. Caregivers’ Experience 60% of caregivers did not get all questions answered at the patient’s diagnosis and did understand treatment risks. 75% of health care professionals did NOT provide information on organizations and support groups for young-onset colorectal cancer. Caregivers N=427 Sex (No.) Females 376 Males 51 Age (No.) 18-29 45 30-39 289 40-49 92 NA 1 Race / Ethnicity (No.) White Caucasians 212 Hispanic / Latino 77 African Americans 88 Asians / Pacific Islanders 27 Native Americans 20 Others 3 50% of doctors did not talk to the patient's family about their elevated risk of the disease and the need for screening 10 years prior to the patient's age at diagnosis.
  110. 110. Caregivers’ Experience Role changes (59%) No effect (23%) Multiple psychosocial effects (18%)
  111. 111. Young-Onset Patients Survey Summary  Young adults experience multiple symptoms but they may not be aware of young-onset colorectal cancer and do not associate their symptoms with CRC. One in four patients delayed reaching out to their doctor for more than one year.  There is an urgent need to raise awareness among medical professionals of the increasing incidence of young-onset CRC and that the disease can affect patients under 50 years old.  The majority of young-onset patients and survivors were diagnosed with advanced, metastatic disease, which is proportionally higher than the overall CRC population.  There is a correlation between late stage diagnosis and the number of different physicians / providers patients had to visit.  The study was subject to certain limitations, including access to technology, gender bias (~80% female) and race/ethnicity bias (87% White Caucasian). The Alliance plans to increase its outreach and enhance diversity among participants in future surveys.
  112. 112.  Resources are needed to improve the ability for caregivers to manage everyday tasks, potentially helping caregivers feel more organized and in control.  Tools to care for their loved ones will reduce emotional and physical demands involved with caregiving that can cause strain and burnout.  The Alliance use these survey results to learn about and track self-reported medical, psychosocial, and quality of life experiences, allowing our patient and family support program to develop resources and implement programs for this often overlooked group. Young-Onset Caregivers Survey Summary
  113. 113. Acknowledgements: Kim Newcomer Never2Young Advisory board Steven Bushong Ali Miller Will-Jose Velez-Gonzalez Patrice Brown

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