1. Familial cancer syndromes: Tools that can help connect the dots in primary care Emily Edelman, MS, CGC NCHPEG Cancer in the family: Primary Care Matters Bar Harbor, Maine April 13, 2012

2. VISULIZE ACTIVITIES WITH TIMELINES! Outline Information at the point of care and beyond Clinical needs & tools that can help Identifying and assessing risk Managing genetic risk – testing, referring, screening Communicating genetic risk New CME - “CRC: Are your patients at increased risk?”

3. VISULIZE ACTIVITIES WITH TIMELINES! Genetics Resources Point of care Journals Lectures Peer learning Self-directed CME Training programs Conferences Information Time Web resources Audit & feedback Professional guidelines

4. Point of care tools “Just in time” information Motivation to learn Minimum to address a specific clinical action or question

5. Non-geneticists need information about genetic conditions Levy H et al. Genet Med 2008:10(9):659– 667

6. VISULIZE ACTIVITIES WITH TIMELINES! Role of the PCP Role in Genomic Medicine Minimum Roles Triaging Coordinating Counseling August 2010: NCHPEG & AMA Advisory Committee Meeting Identify Intervene Collaborate Awareness of testing process What do PCPs need to know how to do regarding hereditary (colon) cancer?

7. VISULIZE ACTIVITIES WITH TIMELINES! Identifying & Assessing Risk Clinical opportunities New patient Change in family history Cancer or polyp diagnosis Patient question Maria 34 y/o woman presenting for annual exam Mother diagnosed with breast cancer 3 months ago Worried about her own cancer risk

8. VISULIZE ACTIVITIES WITH TIMELINES! Risk Assessment Ask the right questions Identify patterns of high risk Classify risk level

9. Identifying Risk: Maria What information should I collect to assess Maria’s cancer risk? www.uch.edu/pdf/HerCan_Family_History_questionnaire.pdf

10. Identifying Risk: Maria What information should I collect to assess Maria’s cancer risk? familyhistory.hhs.gov

11. Identifying Risk: Maria What information should I collect to assess Maria’s cancer risk? www.nchpeg.org From “CRC: Are your patients at increased risk?”

12. Identifying Risk: Maria Information What information should I collect to assess Maria’s cancer risk? USPSTF. 2005. Ann Intern Med; 143:355-361.

13. Identifying Risk: Maria Information What information should I collect to assess Maria’s cancer risk? www.nchpeg.org From “Core Principles in Family History for All Health Professionals”

14. Identifying Risk: Maria Information What information should I collect to assess Maria’s cancer risk? www.medicalhomeinfo.org/GPCI.aspx

15. Identifying Risk: Maria 64 yo 61 yo 58 yo 55 yo 57 yo dx. 60 dx. 58 dx. 55 40 yo 37 yo 26 yo 34 yo 27 yo 32 yo 28 yo dx. 30 d. 68 d. 65 d. 52 yo 82 yo dx 70 Ovarian caProstate ca Breast ca What are the factors that increase Maria’s risk of breast cancer?

16. Identifying Risk: Maria 64 yo 61 yo 58 yo 55 yo 57 yo dx. 60 dx. 58 dx. 55 40 yo 37 yo 26 yo 34 yo 27 yo 32 yo 28 yo dx. 30 d. 68 d. 65 d. 52 yo 82 yo dx 70 What are the factors that increase Maria’s risk of breast cancer? www.nsgc.org From “Cancer Genetic Counselors: Working Hand-In-Hand with Physicians to Educate and Care for Patients,” brochure.

17. Identifying Risk: Maria 64 yo 61 yo 58 yo 55 yo 57 yo dx. 60 dx. 58 dx. 55 40 yo 37 yo 26 yo 34 yo 27 yo 32 yo 28 yo dx. 30 d. 68 d. 65 d. 52 yo 82 yo dx 70 What are the factors that increase Maria’s risk of breast cancer? www.nchpeg.org From “CRC: Are your patients at increased risk?”

18. Assessing Risk: Maria 64 yo 61 yo 58 yo 55 yo 57 yo dx. 60 dx. 58 dx. 55 40 yo 37 yo 26 yo 34 yo 27 yo 32 yo 28 yo dx. 30 d. 68 d. 65 d. 52 yo 82 yo dx 70 Ovarian caProstate ca Breast ca What does this family history mean?

19. Assessing Risk: Maria 64 yo 61 yo 58 yo 55 yo 57 yo dx. 60 dx. 58 dx. 55 40 yo 37 yo 26 yo 34 yo 27 yo 32 yo 28 yo dx. 30 d. 68 d. 65 d. 52 yo 82 yo dx 70 What does this family history mean? www.nchpeg.org From “CRC: Are your patients at increased risk?”

20. Assessing Risk: Maria What does this family history mean? www.hughesriskapps.net/

21. Assessing Risk: Maria What does this family history mean? www.cancer.gov/bcrisktool/

22. Assessing Risk: Maria What does this family history mean? www.nchpeg.org From “CRC: Are your patients at increased risk?”

23. Assessing Risk: Maria What does this family history mean? Information

24. Assessing Risk: Maria What does this family history mean? Information www.nchpeg.org From “CRC: Are your patients at increased risk?”

25. Assessing Risk: Maria What does this family history mean? Information www.nsgc.org

26. Assessing Risk: Maria What does this family history mean? Information www.mainedartmouth.org/Cancer-inthe-family.html

27. VISULIZE ACTIVITIES WITH TIMELINES! Coordinating & Managing Risk Clinical opportunities Risk is assessed Referring or consulting Genetic testing Screening Ben 62 y/o man presenting for annual exam Update history: 3 adenomatous polyps Perform risk assessment

28. VISULIZE ACTIVITIES WITH TIMELINES! Ben: Coordinating & Managing Risk Female ca, NOSEndometrial ca Colon ca Polyps Endometrial Ca dx 44 CRC dx 62 CRC 70s 3 polyps 50 Ben 62 3 polyps d.“female” cancer 50s

29. VISULIZE ACTIVITIES WITH TIMELINES! Ben: Coordinating & Managing Risk Additional Genetic Evaluation Refer or Consult Order Genetic Testing Order Screening Test Communicate

30. VISULIZE ACTIVITIES WITH TIMELINES! Ben: Coordinating & Managing Risk What do I do for a patient at increased risk? How do I refer or find a specialist?

31. VISULIZE ACTIVITIES WITH TIMELINES! Ben: Coordinating & Managing Risk What do I do for a patient at increased risk? How do I refer or find a specialist? www.nchpeg.org From “CRC: Are your patients at increased risk?”

32. VISULIZE ACTIVITIES WITH TIMELINES! Ben: Coordinating & Managing Risk What do I do for a patient at increased risk? How do I refer or find a specialist? www.nchpeg.org From “CRC: Are your patients at increased risk?”

33. VISULIZE ACTIVITIES WITH TIMELINES! Ben: Coordinating & Managing Risk What do I do for a patient at increased risk? How do I refer or find a specialist? www.nchpeg.org From “CRC: Are your patients at increased risk?”

34. VISULIZE ACTIVITIES WITH TIMELINES! Ben: Coordinating & Managing Risk What do I do for a patient at increased risk? How do I refer or find a specialist? Information

35. VISULIZE ACTIVITIES WITH TIMELINES! Ben: Coordinating & Managing Risk What do I do for a patient at increased risk? How do I order and use genetic testing?

36. VISULIZE ACTIVITIES WITH TIMELINES! Ben: Coordinating & Managing Risk What do I do for a patient at increased risk? How do I order and use genetic testing? www.arupconsult.com/Algorithms/HNPCC.pdf

37. VISULIZE ACTIVITIES WITH TIMELINES! Ben: Coordinating & Managing Risk What do I do for a patient at increased risk? How do I order and use genetic testing? www.nchpeg.org From “CRC: Are your patients at increased risk?”

38. VISULIZE ACTIVITIES WITH TIMELINES! Ben: Coordinating & Managing Risk What do I do for a patient at increased risk? How do I order and use genetic testing? www.nchpeg.org From “CRC: Are your patients at increased risk?”

39. VISULIZE ACTIVITIES WITH TIMELINES! Ben: Coordinating & Managing Risk What do I do for a patient at increased risk? How do I order and use genetic testing? Information

40. VISULIZE ACTIVITIES WITH TIMELINES! Ben: Coordinating & Managing Risk What do I do for a patient at increased risk? How do I order and use genetic testing? Information ASCO. 2010. JCO; 28(5): 893-901 http://jco.ascopubs.org/content/28/5/893.full.pdf

41. VISULIZE ACTIVITIES WITH TIMELINES! Ben: Coordinating & Managing Risk What do I do for a patient at increased risk? How do I order and use genetic testing? Information www.nchpeg.org From “CRC: Are your patients at increased risk?”

42. VISULIZE ACTIVITIES WITH TIMELINES! Ben: Coordinating & Managing Risk What do I do for a patient at increased risk? How do I order and use genetic testing? Information City of Hope Intensive Course in Cancer Risk Assessment www.cityofhope.org/education/health-professional- education/intensive-course/Pages/default.aspx

43. VISULIZE ACTIVITIES WITH TIMELINES! Ben: Coordinating & Managing Risk What do I do for a patient at increased risk? How do I select the appropriate screening plan?

44. VISULIZE ACTIVITIES WITH TIMELINES! Ben: Coordinating & Managing Risk What do I do for a patient at increased risk? How do I select the appropriate screening plan? www.nchpeg.org From “CRC: Are your patients at increased risk?”

45. VISULIZE ACTIVITIES WITH TIMELINES! Ben: Coordinating & Managing Risk What do I do for a patient at increased risk? How do I select the appropriate screening plan? Genetic/Familial High-Risk Assessment: Breast and Ovarian, 2010, www.nccn.org

46. VISULIZE ACTIVITIES WITH TIMELINES! Ben: Coordinating & Managing Risk What do I do for a patient at increased risk? How do I select the appropriate screening plan? www.genefacts.org

47. VISULIZE ACTIVITIES WITH TIMELINES! Ben: Coordinating & Managing Risk What do I do for a patient at increased risk? How do I select the appropriate screening plan? Information

48. VISULIZE ACTIVITIES WITH TIMELINES! Tools can help with risk assessment Ask the right questions Identify patterns of high risk Classify risk level

49. VISULIZE ACTIVITIES WITH TIMELINES! Tools can help with coordinating & managing risk Additional Genetic Evaluation Refer or Consult Order Genetic Testing Order Screening Test Communicate

50. Visit nchpeg.org to hone your skills and download point of care tools GRAPHIC: NCHPEG/AMA CRC program

51. VISULIZE ACTIVITIES WITH TIMELINES! Summary PCP has a critical role in management of cancer risk Many tools available that can help at the point of care and beyond

52. VISULIZE ACTIVITIES WITH TIMELINES! Thank you! eedelman@nchpeg.org www.nchpeg.org