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Hereditary Breast and Ovarian Cancer (HBOC) Phase 1

Phase 1 HBOC Approaches

Enhance cancer registry reporting including bi-directional reporting

State-based cancer registries can be used to influence and assess health improvement impact for BRCA related conditions. Several statesare currently identifying people at risk for BRCA mutations using existing cancer registry data. Note that this approach necessarily identifies people affected by cancer, rather than unaffected women with increased risk due to family history (the intended target population of the USPSTF BRCA recommendations); however, the approach can be considered a mechanism for identifying families at risk for BRCA mutations through cancer registry data.

Example: Michigan Using existing cancer registry data (2006-2007), Michigan identified 3,025 cases of breast cancer diagnosed before age 50, 1544 cases of ovarian cancer diagnosed at any age, 147 cases of male breast cancer, and 1985 cases of multiple primary cancers that might benefit from genetics evaluation, and has developed a bi-directional reporting system to return facility-specific data and educational materials to 150 reporting institutions.

Example: Connecticut implemented bidirectional reporting through a small Healthy People 2020 action award and reported back 1127 cases of breast cancer diagnosed before age 50, 533 cases of ovarian cancer, 47 cases of male breast cancer, and 2085 cases of multiple primary breast/ovarian cancers (with most recent diagnosis in 2008-2009) using existing cancer registry data collected in 2008-2009. Practitioners at acute care hospitals received reports on numbers of breast and ovarian cancers to alert them that patients in their care might be at increased risk for HBOC. The providers also received educational materials about HBOC and copies of evidence-based “best practice” recommendations for genetic testing. Staff at each hospital were offered the services of a board-certified genetic counselor for a Grand Rounds training session on prevention and early detection of cancer and the appropriate use of genetic counseling and testing services. Ultimately staff at 70% of the 32 hospitals requested and received a training session. In addition, project directors from 14 National Breast and Cervical Cancer Early Detection Program and Colorectal Cancer Control Program sites received information packets and training.

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Informing evidence-based policy making

Expanding coverage for recommended clinical services that can improve health

State public health departments can provide information to policy makers so that they can make evidence-based decisions about health care protocols and coverage issues.

Example: Michigan During a time of close working partnerships and information exchange with public health, providers and payers in Michigan, insurance coverage consistent with the 2005 USPSTF BRCA recommendation expanded to more than 7 million of the state’s residents. Michigan’s work helped to increase the number of health plans with written BRCA counseling and testing policies consistent with USPSTF guidelines from 4 to 25 in 2013. This work provides a model for effective public health-payer partnerships to promote evidence-based policymaking, and also to help support the implementation of the USPSTF BRCA recommendation as an Affordable Care Act-covered preventive service in other states.

Example: Oregon Oregon’s policy work has two major focus points: (1) Informing evidence-based policymaking related to health insurance (Medicaid and private insurance) coverage of BRCA 1 and 2 counseling, testing and treatment; (2) incorporating genomics activities into the Oregon Comprehensive Cancer Control Plan.

Example: Georgia Georgia assessed insurance coverage for genetic counseling and testing and held an executive briefing with health plan directors and representatives and the Georgia Office of Insurance and Safety Fire Commissioner. Of 13 health plans reviewed, 8 had policies aligned with 2005 USPSTF BRCA guidelines. They promoted information related to the coverage of cancer genetics services through partnerships, incorporated genomics objectives into the state Comprehensive Cancer Control plan, and created a referral list of alternative payment modalities for un/underinsured women.

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Surveillance indicators development and tracking and Healthy People 2020 objective tracking

Healthy People 2020 includes the genomics objective: “Increase the proportion of women with a family history of breast and/or ovarian cancer who receive genetic counseling.”

OPHG is currently leading an effort to develop BRCA surveillance indicators from a federal perspective. Efforts to identify appropriate BRCA surveillance indicators that are relevant at the individual state level are also important. Once this process is completed, opportunities and challenges will be clarified in regard to assessing the burden within states and measuring the impact of interventions.

Several states are already using surveillance systems and surveys such as CDC’s Behavioral Risk Factor Surveillance System (BRFSS) to monitor awareness of BRCA and the appropriate use of genetic services.

Example: Oregon The Oregon Genetics Program (OGP) worked in 2008 – 2011 to expand surveillance of BRCA testing by Oregon cancer genetics clinics. With funding from CDC, they developed, implemented and evaluated a surveillance program to monitor the use of cancer-specific evidence-based genomic tests and family history in Oregon. These surveillance activities targeted Oregon’s 2.9 million adults and Oregon healthcare providers (HCPs) working in a number of different clinical settings. The objectives were to: (1) evaluate how familial risk of colorectal, breast and ovarian cancer influences Oregon healthcare practice and Oregonians’ behavior; (2) evaluate Oregonians’ awareness, knowledge and use of BRCA 1 & 2 testing; (3) evaluate Oregon HCPs’ knowledge, attitudes, and use of genomic tests for hereditary colorectal, breast and ovarian cancers; and (4) evaluate disparities in Oregonians’ access to genetic testing and genetic counseling for colorectal, breast and ovarian cancer. BRFSS, Medicaid claims, the Oregon State Cancer Registry (OSCaR), and genetics services data were used, in addition to information gathered from HCPs to assess knowledge, attitudes and use of genomic tests. HCPs in urban, rural, safety net, and private insurance settings were surveyed to identify disparities in access to genomic tests and genetic counseling services. At the end of the project, they reported surveillance findings on the use of genomic tests and family history for colorectal, breast and ovarian cancer and how the findings influence provider practice and behavior. This report also included healthcare provider education recommendations. They found:

  • 2007 Oregon Medicaid client encounter data show that no (0) BRCA tests were done for clients without cancer or symptoms of cancer. (Medicaid data)
  • Although the number of BRCA genetic tests for Oregon Medicaid clients increased from 2007 to 2008, and again from 2008 to 2009, genetic testing for HBOC was significantly underutilized in the Medicaid population in these years. (Medicaid data) The number of genetic tests increased 10-fold from 2001 – 2010.
  • The BRCA mutation carrier prevalence is estimated to be ~17,000 -~24,000 in the Oregon population. [PDF 234.28 KB] (OSCaR data)
  • In 2007 and 2008, 83% of the patients seen in cancer genetics clinics were seen for breast or ovarian cancer; roughly 60% of these patients had BRCA testing. (Cancer Genetic Clinic data)
  • Access to Oregon cancer genetic clinics is challenging for populations living in coastal, central and eastern Oregon. (Cancer Genetic Clinic data)
  • Less than 30% of PCPs and Naturopaths use family history information to help decide to refer to a genetics specialist. (HCP survey data)
  • PCPs are the least confident of their cancer genetics knowledge compared to specialists and OB-GYNs. (HCP survey data)
  • Over 45% of OB-GYNs have received marketing for BRCA testing. (HCP survey data)
  • In 2011, 79.6% of Oregon women reported (via BRFSS) that a healthcare provider had asked about family history of breast or ovarian cancer. [PDF 95.46 KB]

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Education outreach / clinical activities

The style, format, and information included in Tier 1 communication vehicles may vary depending on the population within each state, but examples produced by CDC or states can be helpful as a guide. In addition, more tools and resources are needed that facilitate the clinical identification of Tier 1 conditions. Please see the “HBOC tools and educational materials” section for more information including communication resources for Tier 1 HBOC applications.

Example: Michigan Michigan created and copyrighted the Cancer Family History Pocket Guide© [PDF 147.49 KB], a hand held tool for providers that assists with risk assessment and referral guidelines for patients with a family history of breast, ovarian, colorectal and endometrial cancer. They have to date distributed more than 15,000 of these to assist providers in identifying high risk patients for referral to a genetics specialist. They have educated health plan administrators through newsletter articles, educational packets and a CME online module. One of the major Michigan health plans, with help from the Department of Community Health (MDCH), has surveyed and distributed educational materials to primary care providers via email distribution and a dedicated website. See the Michigan Cancer Consortium website . As an indirect product of this outreach campaign, MDCH partnered with the Cancer Resource Foundation, Inc., to make available more than 50 cancer genetics tests to the underinsured through a co-pay program.

Example: Connecticut Connecticut utilized board-certified genetic counselors to provide in-service trainings to providers. Their approach of offering and actively promoting in-services to each hospital was successful, with twenty-three (70%) of the 32 facilities invited taking advantage of the opportunity. As part of a 2011-2012 Healthy People 2020 Action Project, the Connecticut Department of Public Health Genomics Office is promoting cancer genomics best practices for HBOC. The purpose is to inform Connecticut health care practitioners about evidence-based recommendations for referral to, and use of, cancer genomic services. Educational outreach entitled “Cancer Genomics Best Practices for Connecticut Healthcare Providers” [PDF 7.80 MB], consisted of materials including:

  • Hospital-specific tumor registry data on diagnosed cancers suggestive of HBOC and Lynch Syndrome;
  • Evidence-based recommendations for genetic counseling and testing;
  • A slide-chart clinical decision support tool containing current, evidence-based referral criteria for HBOC;
  • Fact sheets and resources for providers and patients, including “Hereditary Breast and Ovarian Cancer – Information for Patients and their Families”, in English [PDF 276.85 KB].
  • A list of cancer genetic counselors in Connecticut.

Example: New York, working with Massachusetts and Connecticut A partnership of three states developed and disseminated materials about genetic counseling and testing for those concerned about a personal and/or family history of HBOC (poster, webpages, hotline to help folks identify a nearby genetic counselor who could provide genetic counseling on a zero-based sliding-fee scale). Posters were distributed throughout the state and a letter sent to 25,000 providers to inform them about BRCA 1 & 2 genetic counseling and testing.

Example: Mid-Western States Collaborative Effort Public health and genetics professionals in the states of Illinois, Indiana, Kentucky, Missouri and Ohio worked together to produce a flyer “Genetic Testing for Breast and Ovarian Cancer … It’s Not Just a Simple Blood Test”.

Example: Georgia Partners including the state of Georgia DPH developed educational materials on HBOC in English, Spanish and Vietnamese and surveyed health care providers to identify knowledge gaps. Approximately 43% of surveyed providers [PDF 126.38 KB] were unaware that HBOC could be inherited through the paternal lineage, and 77% of providers did not recognize ovarian cancer as a risk factor for HBOC.

Example: Georgia Georgia partners used the Breast Cancer Genetic Referral Screening Tool or B-RST in various clinics around the state. They have developed a standard formatted lecture/presentation to help public health clinics use this tool in their clinics.

Example: Oregon Oregon set up a regular call and a series of webinars with providers participating in the Oregon Breast and Cervical Cancer Early Detection Program. They educated the Ashkenazi Jewish population by creating a specific toolkit and partnered with non-profits to provide educational outreach through community presentations and social networking. 

Example: Model Program in Los Angeles VA Hospitals Although not statewide a CDC funded program focused on Los Angeles VA hospitals’ Women’s Health clinics and produced a cancer genetics toolkit, CME approved lecture series, website, and information sheets [PDF 2.62 MB]. A questionnaire for patients and a cancer family history reminder system for use in Electronic Medical Records was also developed. [PDF 110.73 KB]

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