Examining Racial Differences in Utilization of Genetic Counseling Services in Hereditary Cancer Network Database

Size: px

Start display at page:

Download "Examining Racial Differences in Utilization of Genetic Counseling Services in Hereditary Cancer Network Database"

Bonnie Shields
5 years ago
Views:

1 Examining Racial Differences in Utilization of Genetic Counseling Services in Hereditary Cancer Network Database Taylor Seaton, MS Cancer Genomics Epidemiologist MDHHS Cancer Genomics Program: Lifecourse Epidemiology and Genomics Division November 2017

2 Background: Genetic Cancer Hereditary Breast and Ovarian Cancer (HBOC) Breast cancer risk: 46% - 71% in women and 2.8% in men Ovarian cancer risk: 17% - 46% Lynch Syndrome Colorectal cancer risk: 22% - 92% Endometrial cancer risk: 20% - 70% Ovarian cancer risk: 4% - 12% 2

3 Background: National Comprehensive Cancer Network Guidelines : BRCA ½ Testing Criteria Meeting one or more of these criteria warrants further assessment and genetic testing and management Known Familial Mutation Ashkenazi Jewish Personal HX of Breast Cancer diagnosed at age 50 or younger Personal HX of Multiple Primary Breast Cancer Personal HX of Male Breast Cancer Personal HX of Triple Negative Cancer Personal HX of Ovarian, Prostate, or Pancreatic Cancer No personal HX but a significant family history National Comprehensive Cancer Network Clinical Practice Guidelines in Oncology. BRCA ½ Testing Criteria Version Accessed August

4 Michigan Cancer Surveillance Program: 15-Yr Annual Age-Adjusted Incidence Rates for Breast Cancer- Age 50 or Younger, by Race 60.0 Age-Adjusted Incidence Rate (per 100,000) White Black Year Statistics provided by the Michigan Cancer Surveillance Program, September

5 Michigan Cancer Surveillance Program: 15-Yr Annual Age-Adjusted Mortality Rates for Breast Cancer- Age 50 or Younger, by Race 14.0 Age-Adjusted Mortality Rate (per 100,000) Black White Year Statistics provided by the Michigan Cancer Surveillance Program, October

6 Background: Recent Studies on Racial Disparities and Genetic Testing Black women less likely to receive a physician recommendation for BRCA ½ testing 1 Difference remained after adjusting for mutation risk Black women diagnosed with breast cancer are less likely to receive genetic testing compared to White women 2 Predictors of BRCA ½ testing uptake include being at high risk of mutation, understanding the benefits of testing, and having few financial and administrative barriers Rates of risk reducing surgeries are lower among Black BRCA carriers compared to White and Hispanic carriers 3 Also found discussion of genetic testing with a provider was 16 times less likely among Black women compared to White women. 6

DP-14-1407: Promoting System Change Through Education, Surveillance, and Policy to Advance Cancer Genomics Best Practices 5 year

health system changes to promote cancer genomics best practices Surveillance Strategy: To develop and expand surveillance systems

7 DP : Promoting System Change Through Education, Surveillance, and Policy to Advance Cancer Genomics Best Practices 5 year CDC Cooperative Agreement Long-term aim: to reduce mortality rates of hereditary cancers by overcoming barriers and advancing health system changes to promote cancer genomics best practices Surveillance Strategy: To develop and expand surveillance systems on hereditary cancers and use of cancer genomics best practices for Hereditary Breast and Ovarian Cancers (HBOC) and Lynch Syndrome (LS) 7

8 BRCA Database and Hereditary Cancer Network Database, Clinical data collected on all HBOC/BRCA-related genetic counseling visits conducted by board-certified/ eligible genetic specialist at 18 clinic locations across Michigan Starting in 2015, case definition increased to include LS-related visits Adults, age 18 or older Patient visits from 2008-Present Data includes: Demographics, visit information, personal and family history of cancer, BRCA testing results, and cancer-related surgical procedures Current analysis examines patients who self-identified as either White or Black for years Total Population = 20,275 (N=1,859 under new case definition) White Population= 16,569 (81.7%) Black Population= 1,502 (7.4%) Other Population= 2,204 (10.9%) 8

9 Racial Distribution: MI Overall Population vs Hereditary Cancer Network Database Patients Counseled Black 14% Other 9% Black 7% Other 11% 1 1 MIPopulation 2010 White 77% White 82% Hereditary Cancer Network Database MI Population Data Source: US Census QuickFacts, Other = Asian, American Indian/Alaska Native, Native Hawaiian/PI, Hispanic, Multi-racial 9

10 Initial Genetic Counseling Visits by Race: Patients Counseled in the Hereditary Cancer Network Database by Race # of Patients White Black Due to methodology changes that took place in 2014, estimates from 2014 and moving forward cannot be compared to estimates from 2013 and earlier 10

11 Characteristics of Patients in Hereditary Cancer Network Database by Race: Average Age Black: 49.3 years (Range 18 to 83) White: 51.9 years (Range 18 to 94) 11

12 Characteristics of Patients in Hereditary Cancer Network Database by Race: Insurance Status Medicaid 1 Medicare Private 1 Uninsured Unknown Black (N=1,502) 187 (12%) 181 (12%) 997 (66%) 17 (1%) 120 (9%) White (N=16,569) 568 (3%) 2,567 (15%) 11,789 (71%) 142 (1%) 1,503 (10%) 1 Statistically Significant at P value < 0.05 Referring Provider Black (N=1,502) White (N=16,569) Internal Med 1 Oncologist 1 OB/GYN Self 1 Surgery Other 1 Missing data Black N= 53 (4%), White N=1,396 (9%) 1 Statistically Significant at P value < (9%) 455 (30%) 203 (14%) 50 (3%) 357 (24%) 242 (16%) 1,069 (6%) 3,214 (19%) 2,323 (14%) 1,474 (9%) 3,984 (24%) 1,474 (19%) 12

13 Counseled, Tested, and Received Positive Result by Race: White Black 18,000 16,552 1,600 1,501 16,000 1,400 14,000 1,200 12,000 10,000 8,000 10,274, (62%) 1, , (52%) 6, ,000 2,000 1,328, (13%) , (9%) 0 0 Initial Visit Genetic Testing Ordered At Least 1 Positive Result Initial Visit Genetic Testing Ordered At Lest 1 Positive Result 13

14 Genetic Test Type by Race: Black N=710 White N=9,178 Site Specific, 5% Ashkenazi, 0% BART, 7% Ashkenzi, 7% BART, 8% Site Specific, 16% Comprehensive, 89% Comprehensive, 69% All comparisons statistically significant at p-value <

15 Reasons Why Genetic Testing was not Pursued by Race Black N=719 White N=6,280 Unkown 46% Insurance Coverage 16% 2 Chose not to Test 8% Insurance 2 Coverage 11% Chose not to Test 8% Not a good Candidate Unkown 50% Not a good Candidate 20% Other 8% 1,2 22% Other 11% 1,2 1 Other includes: Patient previously tested, waiting to talk to relatives, concern about genetic discrimination, wants to test elsewhere. 2 Statistically significant at p-value <

16 Initial Genetic Counseling Visits and Testing by Race and Gender Initial Counseling Visits Black N (%) White N (%) Total N(%) Female 1,449 (97%) 15,487 (94%) 16,936 (94%) Male 52 (3%) 1,065 (6%) 1,117 (6%) Total 1,501 (100%) 16,552 (100%) 18,053 (100%) Genetic Testing Ordered following Initial Visit Black N (%) White N (%) Total N(%) Female 753 (52%) 9,566 (62%) 10,319 (61%) Male 29 (56%) 696 (65%) 725 (65%) Total 782 (52%) 10,262 (62%) 11,044 (61%) 16

17 Genetic Counseling in Males by Race Age Adjusted Breast Cancer Incidence Rates for in Males 1,2 Black: 2.64 / per 100,000 White: 1.36/ per 100,000 Personal Cancer History Any Cancer 2 BRCA Related Cancer 2,3 Breast Cancer 2 Black 35 (67%) 25 (48%) 18 (35%) White 518 (49%) 274 (26%) 127 (15%) Family Cancer History Known Familial Mutation 2 No Personal HX, Familial BRCA Related Cancer 2-4 Black 4 (8%) 20 (38%) White 358 (34%) 686 (65%) 1 Statistics provided by the Michigan Cancer Surveillance Program, September Statistically significant at p-value < BRCA Related Cancer defined as Breast, Ovarian, Prostate or Pancreatic Cancer 4 Abbreviation: HX=history 17

18 Select NCCN Guideline Criteria among Counseled Patients by Race: % 43% 40% 37% 35% 30% 25% 25% 25% 23% 20% 15% 12% 16% 18% 15% 13% 10% 5% 0% 3% Known Familial 1 Mutation 1 BC at 45 3% 2% BC Multiple Primaries BC at 50 & Family HX of 1 BC 7% BC at 50 & No 1 Family HX BC & Significant 1 Family HX 3% 0% BC & Ashkanazi 1 Jew 5% 2% 1% 1% 1 OC Male BC No Personal HX, Familial 1,2 BRCA Cancer White Black Abbreviations: BC= Breast Cancer OC=Ovarian Cancer 1 Statistically significant at P-Value < BRCA Related Cancer defined as Breast, Ovarian, Prostate, and Pancreatic Cancer 18

19 Summary of Major Findings Blacks are underrepresented in this genetic counseling database Statistically significant differences exist in genetic testing by race Insurance coverage a barrier? Blacks were more likely to be younger and with a personal history of cancer Whites were more likely to have a known familial mutation or significant family history without having a personal history of cancer Cascade Screening important to identify those without personal history 19

Limitations Not representative of all Genetic Counseling 18 clinics represented Varying time frame for each clinic Counties with At least 1 Genetic Counseling Clinic Represented in

20 Limitations Not representative of all Genetic Counseling 18 clinics represented Varying time frame for each clinic Counties with At least 1 Genetic Counseling Clinic Represented in Clinical Database Only includes genetic tests ordered by a genetic counselor Does not account for Direct to Consumer testing Only started collecting data on triple negative breast cancer in

21 Current and Future MDHHS Projects for Genetic Counseling and Testing Biannual updates with Clinical Partners Provide genetic clinics reports of their patient population regularly Analyze data for Lynch Syndrome Conduct workshops with Michigan Association of Health Plans (MAHP) To provide resources and answer questions on testing, guidelines, policy, informed consent Cascade Screening Call to Action Meeting on Sept. 29th Increase Public Awareness Ad campaign Hereditary Colorectal Cancer Family Day on Nov 11 th (Partnered with U of M) 21

22 MDHHS Clinical Network Participants Beaumont Cancer Genetics Program Beaumont Hospital-Dearborn Genetic Risk Assessment for Cancer Clinic Henry Ford Health System Cancer Genetics Program Karmanos Cancer Institute Cancer Genetic Counseling Service InformedDNA Telephone Genetic Counseling Services Mid-Michigan Hereditary Cancer Clinic Michigan State University Hereditary Cancer Program Marquette General Hematology/Oncology St. Joseph Mercy Hospital Cancer Genetics Program St. John Providence Health System Cancer Genetics Program (Southfield and Grosse Pointe Woods, MI) St. Mary Health Care Lacks Cancer Center Genetics (Grand Rapids, MI) St. Mary Mercy Our Lady of Hope Cancer Center (Livonia, MI) University of Michigan Breast and Ovarian Cancer Risk and Evaluation Program University of Michigan Cancer Genetics Clinic West Michigan Cancer Center Munson Cancer Genetics Clinic Spectrum Health Cancer Genetics Program 22

23 References 1. McCarthy et al. Health Care Segregation, Physician Recommendation and Racial Disparities in BRCA ½ Testing among Women with Breast Cancer. J Clin Oncol. 2016: 34; Jones et al, Predictors of BRCA1/2 testing among Black women with breast cancer: Population-based study. Cancer Medicine 2017, 6(7): Cragun et al., Racial Disparities in BRCA Testing and Cancer Risk Management Across a Population-Based Sample of Young Breast Cancer Survivors. Cancer 2017, 123:

24 Disclaimer Funding for this project was made possible in part by the Centers for Disease Control and Prevention. The views expressed herein do not necessarily reflect the official policies of the U.S. Department of Health and Human Services, nor does the mention of trade names, commercial practices, or organizations imply endorsement by the U.S. government 24

25 THANK YOU! Please contact Taylor Seaton at (517) / for further questions or comments 25

APPLYING AN IMPLEMENTATION SCIENCE APPROACH TO GENOMIC MEDICINE: A WORKSHOP

APPLYING AN IMPLEMENTATION SCIENCE APPROACH TO GENOMIC MEDICINE: A WORKSHOP Debra Duquette, MS, CGC November 19, 2015 Session III: Population Health and Genomics: Incremental Implementation or Radical