1. Genetic Counseling Referrals among Cancer Registry Patients
Meeting NCCN Guidelines:
An Ohio Study
Lindsey Byrne, MS LGC
Karen Huelsman, MS, LGC, Nichole A. Morman, MS, LGC, Kate Shane, MS, LGC,
Elayna Freese, CTR Karen Smith, RHIA, CTR,
Laura L. Vondenhuevel, RHIT, CTR, Maria Teresa Ramirez, CTR, Anna Starr BS
TriHealth Cancer Institute, Cincinnati, OH;
OhioHealth, Columbus, OH;
The Ohio State University James Cancer Center, Columbus, OH;
Mount Carmel Health, Columbus, OH;
CHAMPS Oncology, Columbus, OH
Ohio Department of Health

2. Objectives Explain genetic counseling, genetics, and hereditary cancer
Discuss our Ohio Genetic Counseling study and collaboration with registry data
Identify interventions and the future of our study through the National Comprehensive Cancer Network (NCCN) guidelines

3. Genetic Counseling, Genetics, and Hereditary Cancer

4. What is a Licensed Cancer Genetic Counselor (LGC)?
Health care professionals with a specialized graduate degree in the areas of medical genetics and counseling Calculate a cancer risk analysis from acquired personal and family histories Provide in-depth counseling and education about cancer genetics, hereditary cancer, and genetic testing Offer a course of action for managing cancer risk that seems personally appropriate (genetic testing, screening or long-term follow up) Order and interpret genetic tests Address complex psychosocial issues Facilitate entry into research studies
Able to “translate” complex genetic information into something understandable to a patient

7. Most cancers are not hereditary
10-15% familial
5-10% hereditary
75-85% sporadic

8. Slide Courtesy Greenwood Genetics
Basic Genetics
Slide Courtesy Greenwood Genetics

9. DNA and mutations A→T G→C Example Normal DNA THE DOG RAN OUT
DNA mutation THE TTD OGR ANO UT
DNA mutation TAE DOG RAN OUT
DNA mutation THE OGR ANO UT_

11. Our Study!

12. Ohio Partners for Cancer Control
(OPCC)
The Cancer Plan
Primary Prevention
HPV
Early Detection
Colorectal Cancer
80% by 2018
Breast Cancer
Increase breast screening utilization
Reduce late stage diagnosis rate
Patient Centered Services
Survivorship Services
OPCC
Chairs and Executive Committee
ODH
University/Business
Communities
Healthcare systems
The purpose of the OPCC is to implement the current Ohio Comprehensive Cancer Control plan. The partnership invites individuals and organizations with an interest in cancer prevention and control to participate in the OPCC vision.
Cancer Genetics

13. Objective 15: Cancer Genetics
By December 31, 2020, increase the overall number of individuals who receive Ohio Cancer Genetic Network (OCGN) Cancer Risk Assessment services.
Baseline 4,590 Target 5,508
We have 11,758
Ohio Cancer Risk Assessment Services-Ohio healthcare facilities that provide cancer risk assessment and counseling services by licensed genetic counselors specializing in cancer genetic counseling

14. Objective 15: Cancer Genetics Strategies
Promote collaboration between cancer genetic counselors and hospital registries to identify patients and families appropriate for genetic counseling.
Baseline 3 Hospitals Target 8 Hospitals
Data from the Cancer registry Project is being presented to physicians to show the patient populations that are not being referred to Cancer Genetic Counselors. We are seeing an increase in genetic counseling referrals to the hospitals participating due to this data!

15. Study Rationale To help meet the OPCC’s state cancer plan objective
To establish a statewide benchmark for OCGN centers by analyzing referral data for patients meeting NCCN criteria identified by hospital cancer registries at four OCGN centers.

16. Background
NCI estimates >460,000 patients diagnosed with breast, colon, endometrial, ovarian cancer in 2017.
About 10% of cancers are hereditary, and identification of individuals with these syndromes can impact future health by:
Altering screening recommendations
Determining risk for additional cancers
Offering preventative therapies
Potentially impacting treatment options
NCCN criteria for Genetic Counseling referral
Since 2005, United States Preventive Services Task Force (USPSTF) recommends women at high risk be referred for genetic counseling
Michigan study: 90% of women with breast cancer <50 did not receive genetic counseling. (1) Michigan and Oregon use cancer registry data to identify patients with possible hereditary breast/ovarian cancer (2)
Fussman, C.; Mange, S. Breast and ovarian cancer family history genetic counseling among Michigan women. Mich. BRFSS Surveill. Brief 2013, 7,5.
(Trivers KF. The Activities and Impact of State Programs to Address Hereditary Breast Ovarian Cancer,

17. Participating Sites in Ohio
Lindsey Byrne
Karen Huelsman
Nichole Morman
Kate Shane
Elayna Freese
Karen Smith
Laura Vondenhuevel
*CHAMPS Oncology .
Maria Teresa Ramirez
With support from Anna Starr, Ohio Department of Health

18. Specific Aims
Aim 1.
Determine number of patients eligible for genetic counseling referral among cancer registry patients meeting following criteria:
Diagnosed with female breast cancer between ages 18-49;
Diagnosed with female triple negative breast cancer between ages 50-60;
Diagnosed with male breast cancer at age 18 or greater;
Diagnosed with endometrial cancer between ages 18-49;
Diagnosed with fallopian tube/ovarian/primary peritoneal cancer at age 18 or greater;
Diagnosed with colorectal cancer between ages 18-49;
Diagnosed with endometrial cancer at age 50 or greater with abnormal tumor screening for Lynch syndrome;
Diagnosed with colorectal cancer at age 50 or greater with abnormal tumor screening for Lynch syndrome;
Diagnosed with multiple primary cancers
Aim 2. Evaluate and compare the methods that were utilized for referral to genetic counseling and the uptake of genetic counseling services among the populations described above.
Aim 3. Establish a benchmark for referral and uptake of genetic counseling services for OCGN participating centers.

19. NCCN Criteria for Genetic Referral
DATA REQUESTED FROM CANCER REGISTRY
Female Breast cancer diagnosed under age 50
Colorectal cancer diagnosed under age 50
(or over 50 with abnormal IHC on tumor)
Female Breast triple negative diagnosed 60 and under
Endometrial cancer under age 50
(or over 50 with abnormal IHC on tumor)
Male Breast cancer diagnosed any age
Fallopian tube/ovarian/primary peritoneal cancer diagnosed at any age.
Numerous other criterion for genetic counseling referral incorporate personal cancer and family cancer history, requires healthcare provider to gather additional information to determine patient is appropriate for genetic counseling.
The criteria above are solely based on the patient’s cancer and age at diagnosis; easiest patients to identify.

22. Request Registry Data 4 centers
Methods
Calculate Proportions and compare across locations as aggregate data
Request Registry Data 4 centers
Population Diagnosed
Determine Patients Seen with EMR tracking or
genetics database
(Progeny)
Evaluation Reasons
not seen for QA.

23. Study Variables and Outcomes: Demographics
Gender
GENDER
NAME
Name*
Date of Birth (DOB)
MEDICAL RECORD#
DOB
Medical Record Number (MRN)
These identifiers not shared outside local center, only aggregate data sent to OCGN centers.

24. Study Variables and Outcomes: Medical History
Type of Cancer
CANCER TYPE
AGE AT DIAGNOSIS
Age at Diagnosis
Triple Negative histology female breast
IHC LYNCH
TRIPLE NEGATIVE
IHC tumor screening for Lynch syndrome in colorectal and endometrial cancers

25. Study Variables and Outcomes: Referral and Uptake Factors
Epic Referral and Appointment Tracking
Referring Provider/Specialty
EPIC
REFERRAL
CANCER TYPE
AGE AT DIAGNOSIS
Exclusions- reasons patients not seen
Pathology unlikely inherited
Patient demise or declines visit
Delay in uptake after referral
EXCLUSIONS
UPTAKE FACTORS
IHC LYNCH
Factors that increase uptake
Schedule during infusion or other appt.
Best practice alerts added Epic
Education on NCCN guidelines

26. Study Outcomes Identifiable Factors- Why Patient Came or Not?
Did the Patient Have a Genetics Appointment?
Did the Patient Get Referred?
What are Benchmarks
&
How Can We Improve?

27. Study Design Continuous, prospective, multi-center, Ohio-wide
Compared successive years to quantify quality improvement
Discern possible reason for lack of genetic service
Calculations
% eligible patients referred = Number of Patients Referred to Genetic Counseling
Number of Eligible Patients
% eligible patients seen = Number of Patients Seen for Genetic Counseling
% referred patients seen = Number of Patients Seen for Genetic Counseling
Number of Referred Patients

28. Results Volume Varies by Cancer
data combined all 4 centers
Cancer Site
Total # Patients
Average Annual #
Patients per Site
Annual Range Per Site
Breast cancer <50
2707
173
(83-358)
Triple negative breast
cancer
406 28
(7-75)
Male breast cancer 84 6
(2-12)
Colon cancer <50
679 42
(24-96)
Colon cancer 50+
1659
283
( )
2 sites reporting
Endometrial <50
320 21
(8-83)
Ovarian + Like
1168 77
(42-208)

29. Results Referred for GC vs not Referred
data combined all 4 centers
Cancer Site
Total # Patients
Referred for GC
Not Referred for GC
Endometrial <50
320
67 (20.9%)
253 (79.1%)
Ovarian Like Cancer
(ovarian, fallopian tube, peritoneal)
1168
402 (34.4%)
766 ( 65.6%)
Colon cancer <50
679
176 (25.9%)
503 (74.1%)
Breast cancer <50
2707
1418 (52.4%)
1289 (47.6%)
Triple negative breast cancer 50-60
406
179 (44.1%)
227 (55.9%)
Male breast cancer 84
46 (54.8%)
38 (45.2%)
All Breast
3197
1643 (51.4%)
1554 (48.6%)

30. Results
5,364 patients from met NCCN genetic counseling criteria Overall referral rate increased from 18.5% in 2013 to 61.4% in 2016 Breast was the highest referral rate at 51.4%, ovarian 34.4%, colorectal 25.9%, endometrial 20.9%

31. Proportion of Eligible Patients Referred and Seen for Genetic Counseling 2016 combined data
Referred for GC
Seen for GC %

32. Volume Varies by Location Breast Cancer under 50 n=patients
Year

33. Proportion of Eligible Seen for Genetics Breast Cancer under 50%
Year

34. Volume Varies by Location Ovarian Like Cancer (includes ovarian, primary peritoneal, Fallopian) n=patients
#patients
Year

35. Proportion of Eligible Seen for Genetics Ovarian Like Cancer%
Year

36. Proportion of Eligible Patients Not Referred 2013-2016 combined data

37. Proportion of Eligible Patients Not Referred 2016 data

38. Conclusions Needs Identified Site Specific Trends Improvements
Although we have seen continued improvement, the majority of patients with cancers who meet NCCN guidelines for genetic referral are not being seen. 57.3% overall and 38.6% in 2016.
Site Specific Trends
Referrals are historically best for breast cancer but the largest improvements have been in colon and Gyn.
Improvements
Seen across all cancers measurable over time.
Benchmarking
Collaboration with other Ohio centers allows benchmark, and we hope this study can serve as a point of reference to improve genetic counseling referrals
Partnership
Importance of cancer registry data and collaboration with cancer registry

39. Partnership with Cancer Registry
Cancer Registry provides valuable data that can be applied to identify high risk patients, monitor uptake, and improve the quality of care for cancer patients with the ultimate goal of Precision Medicine.
Treatment
Certification
Research
Public Health
Cancer Registry
Cancer Prevention
Genetic Risk Assessment and QA
Precision Medicine

40. Lessons Learned for Future of Study
How clean is our data?
Are all the hospitals getting the same data points?
Are the same patients being counted at different hospitals locally?
Working to tighten up data with registry to lessen analysis (non-cancerous included, females in male data)

41. Next Steps
Updated protocol to include fifth participating hospital ProMedica from Toledo
Updated protocol to include all pancreatic cancers and prostate cancer that is metastatic or greater than or equal to Gleason score 7.
-What interventions can we implement to increase referrals?
Education to colleagues, community, etc.
Work with specific groups of physicians (create a referral sheet for offices)
Debunk myths and encourage use of specialists versus direct genetic test ordering
Identify way to measure criteria such as family history, Ashkenazi heritage, abnormal IHC colon tumors, these are not always measured in cancer registry.
Do we go back and address patients who were not referred from previous years?

42. Acknowledgments
Ohio Department Health grant funding to build a collaborative study for state of Ohio Malolan Rajagopalan, MD, Elayna Freese, CTR Mount Carmel Health, Columbus OH Karen Huelsman, MS, LGC, Karen Smith CTR TriHealth Cancer Institute, Cincinnati OH Nichole A. Morman, MS, LGC OhioHealth, Columbus, OH Laura L. Vondenhuevel, RHIT, CTR CHAMPS Oncology, Columbus, OH Kate Shane, MS, LGC, Maria Teresa Ramirez, CTR The Ohio State University James Cancer Center, Columbus, OH; Anna Starr BS Ohio Department of Health