High Risk Ad Hoc Workgroup

1. High Risk Ad Hoc Workgroup Research and findings presented to the Federal Advisory Committee on Breast Cancer in Young Women April 2012

2. High Risk Workgroup Charge • To gather initial background information and to advise the Committee regarding: • Developing an understanding of what it means to be at “high risk” for breast cancer as it relates to young women • Identifying potential evidence based messages to be disseminated to these populations

3. Members of High Risk Workgroup • Rochelle Shoretz*, Chair • Marc Hulbert • Ngina Lythgott • Maimah Karmo* • Kelly Hodges • Morrisa Rice • Mavis Nitta* • Clinical advisors: Lisa Newman*, Otis Brawley* *Voting members of the Committee

4. Research Conducted • How do we define “High Risk”? • Cancer organizations and professional societies • Research articles and scientific studies • Major media • What are effective strategies for messaging to diverse populations (content/delivery)?

5. Findings • “High Risk” typically defined to include: • Young women who are known carriers of hereditary susceptibility mutations (e.g., BRCA1, BRCA2 gene mutations; TP53 or PTEN gene mutations that lead to Li-Fraumeni or Cowden Syndrome) • Young women with a strong family history of breast cancer or ovarian cancer • Young women with a history of chest wall radiation • Young women with pathological indices of high risk (e.g., personal history of breast cancer or atypical hyperplasia)

6. Findings • “High Risk” includes those young women who: • Will be referred for genetic counseling/testing • Will be referred for more intensive breast cancer/ovarian cancer screening • Will be eligible for chemoprevention or chemoprevention clinical trials

7. Findings • Young women at “higher risk” of breast cancer include: • Women of Ashkenazi Jewish descent • African American women • These young women are at higher risk than young women in the general population, but do not necessarily fall into the category of absolute “high risk”.

8. CDC, NCI, and Other Risk Definitions • CDC Risk Factors • www.cdc.gov/genomics/resources/diseases/breast_ovarian • NCI Risk Factors • www.cancer.gov/bcrisktool/breast-cancer-risk.aspx • NCI Breast Cancer Risk Tool • www.cancer.gov/bcrisktool • Professional Associations • See handout

10. Messaging to High/Higher Risk Populations General Principles For All Populations • Craft positive messages • Craft messages at appropriate reading levels • Include images of people who resemble target audience

11. Messaging to High/Higher Risk Populations (cont.) African American Community • Include celebrities and people of influence • Consider text messaging to engage younger women • Avoid dry statistics • Craft positive messages

12. Messaging to High/Higher Risk Populations (cont.) Young Women With Family History of BC/OC: • Craft positive messages • Consider using visual images to clarify “high risk” or “higher risk” • Stress the need to understand health history • Suggest gathering health history during family celebrations (e.g., holidays); commit to updating • Note that certain populations do not discuss cancer openly and may use other terms to refer to breast cancer

13. Messaging to High/Higher Risk Populations (cont.) Jewish Community • Consider messaging that includes core community values, such as parenting and family • Address generational issues inherent in family history of disease • “Have the Talk” campaign as an example of effective messaging to young Jewish women and men

14. Next Steps • Committee to discuss: • What core information should be communicated to young women at high risk? • How should messaging vary (content, delivery) for women in different age groups (e.g., 15-20, 20-30, 30-45)? • How should messaging vary (content, delivery) for women in different high risk groups identified by workgroup? • How best to utilize the “Social Media Usage for Breast Cancer Awareness and Survivors” project of the CDC-DCPC in our committee work?