High Risk Ad Hoc Workgroup December 2012

Workgroup Members Susan Brown Kelly Hodges Marc Hurlbert Elyse Kaplan Maimah Karmo* Ngina Lythcott Mavis Nitta* Morrisa Rice Rochelle Shoretz*, Chair Clinical Advisors included: Dr. Lisa Newman* Dr. Otis Brawley* * indicates voting members of the Committee

High Risk Workgroup Charge 1. Developing an understanding of what it means to be at “high risk” for breast cancer as it relates to young women 2. Identifying potential evidence-based messages to be disseminated to these populations To gather initial background information and to advise the Committee regarding:

Questions Examined 1.What are the definitions of “average risk”, “higher risk”, and “high risk” as they relate to young women at risk of breast cancer? 2.What should the ACBCYW consider when exploring components of effective health messages targeting young women? 3.What should the ACBCYW consider when exploring components of evidence-based or evidence-informed messages targeting young women?

Items for ACBCYW Consideration 1.Research Gaps and Additional Data 2.Considerations for Content of Breast Cancer Messages Targeting Young Women 3.Considerations for Delivery of Breast Cancer Messages Targeting Young Women

Draft Committee Recommendations Possible call for focus groups or web-based surveys to: 1. Gather additional data about effective messaging to young women at risk of breast cancer 2. Develop effective messaging in collaboration with, and with feedback from, the target population of young women

A. The ACBCYW recommends that messages be crafted to target the following audiences of “high risk” young women: 1. Young women with hereditary susceptibility of breast cancer 2. Young women with biopsy-proven atypical hyperplasia or lobular carcinoma in-situ 3. Young women with a history of chest wall radiation during adolescence or early adult life Draft Committee Recommendations

If funds permit, messages should also be crafted to target the following audiences of young women at higher than average risk: 4. Young women of Ashkenazi Jewish descent with unknown family history or family history that does not meet “high risk” criteria (see Appendix B) 5. Young women with mammographically-dense breasts (as documented by a breast radiologist) 6. Young women of Jewish descent (non-Ashkenazi) and family history that does not meet “high risk” criteria (see Appendix B) Draft Committee Recommendations

B. Messages should include robust evidence-based recommendations for activities with known breast cancer risk reduction. These activities include: 1.Encouraging young women to become familiar with their bodies and, specifically, their breasts, so that they can report abnormal conditions to their medical providers Draft Committee Recommendations

2. Encouraging young women to make healthy lifestyle choices such as maintaining a balanced diet, maintaining proper weight, smoking cessation, limiting alcohol consumption, and exercising, as healthy lifestyle choices may reduce breast cancer risk and risk of other diseases 3. Encouraging young women to breastfeed because breastfeeding may reduce breast cancer risk Draft Committee Recommendations

C. Messages to young women should not cause undue harm or fear in the target audience. Messages that correlate healthy lifestyle choices with overall health and wellness may have greater impact than messages that correlate healthy lifestyle choices with a reduction of illness and, specifically cancer, which may be perceived as frightening to young women. Messages should be targeted specifically to those at “high risk” (or “higher risk”, if funds permit) and should be clear in that they are not meant to address young women at average risk. Draft Committee Recommendations

D. Messages should correlate with the interests of young women. Messages that evoke images of exercise, fitness, and beauty may have greater impact than messages that evoke images of illness and disease. E. Messages should communicate clear information about breast cancer risk, and encourage a specific action on the part of the target audience (e.g., “Talk to your family”, “Talk to your doctor”, or “You can speak up”). Draft Committee Recommendations

F. Message text should be mindful of health literacy and drafted at an appropriate reading level not to exceed that of an eighth grade student. G. Message text and images should reflect the unique needs of diverse populations of young women. H. Messages should address the stigma associated with breast cancer in some communities. Draft Committee Recommendations

I. Consideration should be given to those national messages that have already been developed to target the “high risk” population. Draft Committee Recommendations

J. Messages should be delivered via social media (Facebook, Twitter), and should utilize communication strategies that work effectively among young women (e.g., text messages). Consideration should be given to alternative methods of reaching young women who do not have access to these communication portals. Draft Committee Recommendations