1. Peter H. Schwartz MD, PhD Indiana University Center for Bioethics Indiana University School of Medicine Philosophy Department, IUPUI Colorectal Cancer Screening: Data, Decisions, and Public Health Kentucky-Indiana Cancer Registrar Meeting Louisville, KY September 8, 2016

2. Thanks to… Primary mentors/ collaborators: Eric Meslin, Greg Sachs, Tom Imperiale, Sue Rawl, Susan Perkins. Funding:  American Cancer Society – Cancer Control Career Development Award for Primary Care Physicians,  Indiana University Health Values Program,  Predictive Health Ethics Research (PredictER), Richard M. Fairbanks Foundation,  IU Center for Law, Ethics, and Applied Research in Health Information (CLEAR),  Patient Centered Outcomes Research Institute (PCORI)

3. Colorectal Cancer (CRC) 140,000 new cases, 55,000 deaths per year 3 rd most common cancer in men and women separately 2 nd most common cancer in men and women combined #1 – cancer mortality in non-smokers Screening tests can reduce incidence and mortality but are underutilized, compared to other diseases.

5. Screening for Colorectal Cancer (CRC) Recommendation: All average risk persons ages 50- 75 should be screened with an approved test for colorectal cancer. Two of the most popular and available tests are:  Colonoscopy every 10 years, and  Fecal Immunochemical Test (FIT), or other high sensitivity fecal occult blood test (FOBT), every year, with positive tests followed up with colonoscopy.

6. Pros and Cons of each test Colonoscopy: Most sensitive and specific, but most invasive, uncomfortable prep, expensive, and risks of its own. FIT: Noninvasive and done at home, but can miss polyps and cancers, must be done annually, and may need follow- up colonoscopy. Other tests: Sigmoidoscopy, FIT + Stool DNA (“Cologuard”), CT Colonography.

7. Screening Rates Up to date with recommended screening (% of eligible adults): o Breast cancer (mammography): 72% o Cervical cancer (pap smear): 83% o Colorectal cancer: 59% o “80% by 2018” initiative led by the American Cancer Society, Centers for Disease Control and Prevention (CDC), and the National Colorectal Cancer Roundtable

8. “80 by 18” Talking Points About 1 in 3 adults between 50 and 75 years old – about 23 million people – are not getting tested as recommended. The people less likely to get tested are Hispanics, American Indians or Alaska Natives, rural populations, men, those 50 to 64, and those with lower education and income. If we can achieve 80% by 2018, 277,000 cases and 203,000 colorectal cancer deaths would be prevented by 2030.

11. Indiana Cancer Facts & Figures 2012

12. Gastroenterology & Endoscopy News August 2015 | Volume 66:8

13. Racial/Ethnic Group Up to date with Screening All60% White, non-Hispanic62% Black, non-Hispanic59% Hawaiian/Pacific Islander 55% Hispanic – English52.5% Latin American49.5% Asians47.2% Hispanic-Spanish30.6%

14. Barriers to screening - Patients Lack of knowledge Low perceived risk Other health concerns Fear (w/test, findings) Low education status Embarrassment “Machismo” Fatalism Mistrust of health care system Language Rural Setting

15. Barriers to screening - Providers Lack of a recommendation No/insufficient patient counseling Poor knowledge of patient-specific barriers Confusion over different guidelines  Example: starting age in Blacks Lack of time

16. Barriers to screening – System/ Social No/inadequate health insurance Access to health care  Screening, subspecialists No regular source of care No/fewer PCP visits

17. Responses Eliminating barriers: Easy and hard System Providers Patients Informing patients: Information Recommendations “Nudges” – Public Health Campaigns

19. “Nudge” ethics Distinctions: Informing Persuading Manipulating Examples: “Lots of people are getting screened.” “Only losers don’t get screened.” “It is your duty to yourself, and your family, and God, to get screened.” Subliminal messages?

20. Two kinds of decisions “Effective” services: There is a medically- recommended option. E.g.  Antibiotics for pneumonia  Mammograms and colorectal cancer screening from ages 50 to 75. “Preference-sensitive” services: There is no medically- recommended option, and the “right” decision depends on the patient’s preferences.  Treatment/ Active surveillance for early prostate cancer  Mammograms from ages 40 to 49.

21. Choices about CRC Screening Two separate decisions: o Getting screened (with any test): Strongly recommended, saves lives, prevents cancer. o Choosing one of the approved tests: colonoscopy, FIT, FIT + Stool DNA. Each has advantages and disadvantages, all are approved for screening. When choosing whether to be screened there is an “efficient” option, i.e. recommended. When choosing a test, there is no one “right” answer: Each person should choose for himself. “Shared Decision Making.”

22. Inadomi JM et al. Arch Intern Med 2012; 172:575-82

23. Giving Quantitative information For an average risk people, ages 50-75: Lifetime: CRC Incidence CRC Mortality No screening 6% (6 per 1000) 3% (3 per 1000) Colonoscopy 1.2% (12 per 1000) 0.46% (4.6 per 1000) FIT annually1.8% (18 per 1000) 0.6% (6 per 1000) Other relevant data: Percent of FIT cards that turn positive: 8% (80 per 1000) Complications of colonoscopy (hemorrhage and bleeding): 0.2%-0.4% (2-4 per 1000)

24. 60 people get colon cancer 30 people die from colon cancer With the stool test, 6 people die With NO test, 30 people die

25. USPSTF – Life-years Gained

26. USPSTF – CRC Deaths Averted

27. Burden - # Lifetime colonoscopies

28. Harms: GI and CV complications

29. Give Quantitative Information? Gives patients additional, relevant information Have to decide how much information is enough and how to present it so that it is understood and used Possibility for misunderstanding and misuse: Innumeracy and Heuristics/ Biases Might dissuade patients from having a life-saving test. Acceptable?

30. Thanks to… Primary mentors/ collaborators: Eric Meslin, Greg Sachs, Tom Imperiale, Sue Rawl. IUSCC etc.: Susan Perkins, Vicki Champion, Dena and Tony Cox, Greg Zimet. Research Assistance: Karen Schmidt, Paul Muriello. Funding:  American Cancer Society – Cancer Control Career Development Award for Primary Care Physicians,  Indiana University Health Values Program,  Predictive Health Ethics Research (PredictER), Richard M. Fairbanks Foundation,  IU Center for Law, Ethics, and Applied Research in Health Information (CLEAR).

31. “Nudge” ethics Additional approaches: “Pay for performance,” to doctors. o Quality metrics to doctors/ hospitals. “Pay for performance,” to patients. o Decrease in health insurance premium? o Deposit in healthcare savings account?

32. Prevention Paradox Geoffrey Rose (1981, 1983): When an intervention will save lives or improve quality of life in a population at a cost that is acceptable to planners, but where the small benefit to individuals may not be worth the cost. E.g. eliminating a favorite cultural food. E.g. a daily blood pressure pill that will reduce chance of heart disease in next 10 years from 5% to 4%.