Young Women’s Initiative Arin Ahlum Hanson, MPH, CHES Manager, Young Women’s Initiative

Overview 1.Living Beyond Breast Cancer Overview 2.National Needs Assessment of Young Women 3.Expansion of Existing LBBC Programs 4.Development of New LBBC Programs 5.Challenges Faced

LBBC History and Overview National nonprofit founded in 1991 located in suburban Philadelphia Among the first to fulfill the need for breast cancer-related information, connection and support after treatment As the need for specialized services increased, LBBC expanded to assist women at all stages of diagnosis, treatment and survivorship. Tailored programs and resources for young women, women diagnosed with triple-negative breast cancer, women living with metastatic breast cancer, African-American women, among others.

LBBC Programs National conferences –Conference for Women Living With Metastatic Breast Cancer (April 26-27) –Annual Fall Conference (September 27) Monthly Webinars Insight, LBBC’s educational newsletter Breast Cancer Helpline, peer-to-peer telephone support lbbc.org, our interactive website Education programs for health care providers

LBBC Publications Early-Stage Series Guide for the Newly Diagnosed Hormonal Therapy Triple-Negative Breast Cancer Fear of Recurrence Treatment Decisions Understanding Your Emotions Metastatic Series Guide for the Newly Diagnosed Managing Stress and Anxiety Treatment Options Understanding Palliative Care General Titles Intimacy and Sexuality Insomnia and Fatigue Yoga and Breast Cancer Lymphedema Financial Concerns

Young Women’s Initiative LBBC has been offering programs and services specific to young women since our founding in 1991 Through 3-year cooperative agreement with Centers for Disease Control and Prevention, Young Women’s Initiative (YWI) was launched in Nov Expands and strengthens LBBC’s existing programs for young women while developing new programs and resources for this community.

National Needs Assessment of Young Women Goals: To assess the information and support needs of young women affected by breast cancer To evaluate subgroup differences in regard to ethnicity, stage of breast cancer, time since diagnosis and age at diagnosis To identify existing gaps in program areas for young women

National Needs Assessment of Young Women Components: 1.Twelve key informant interviews with healthcare providers and cancer advocates 2.Four focus groups with young women (N=33) 3.Environmental scan and gap analysis of 29 organizations 4.National survey of young women (N=1,473)

Program Priorities Selected 1.Developing tailored online resources for young women. 2.Increasing opportunities for young women to receive peer support through LBBC’s Breast Cancer Helpline. 3.Educating healthcare providers about the unique needs of young women affected by breast cancer. 4.Expanding our programming and resources for key groups we determined to have unique needs and to be underserved. The priority groups are women diagnosed before age 30, women living with metastatic breast cancer and African-American women.

Expansion of Programs: Web Content More than 100 website articles developed specifically for young women “Learn About Breast Cancer and Young Women” -16 content pieces about topics relevant to young women including advocacy, using social media to find information and support, bone health, sex and intimacy, fertility, communicating well with healthcare providers and menopause Easy-to-read summaries of breast cancer research studies Profiles of young women across the country Dedicated web writer to create consistent voice

Expansion of Programs: Breast Cancer Helpline (888) 753-LBBC (5222) In 2013, 22 young women have been trained as Helpline Volunteers 40% of the 100 active Helpline volunteers have been diagnosed before age 45 Expanded Helpline to include volunteers from across the country and expanded “live hours” to 9am-9pm EST, Monday-Friday Receive 1,300 calls per year (650 calls in 2011) Estimated that 15-20% of those calls are from young women National marketing campaigns with limited success

Expansion of Programs: Publications Developed print publications on topics of high interest to young women –Guide to Understanding Intimacy and Sexuality (3,000 distributed) –Guide to Understanding Hormonal Therapy (2,500 distributed) –Guide to Understanding Genetics and Family Risk (1,500 distributed) –eReader version of Guide for the Newly Diagnosed In development for 2014 –Complementary Therapies and Integrative Medicine –Financial Concerns (update) –Guide for LGBTQ Community

New Programs: Video Series Let’s Talk About It Video Series for Young Women –Let’s Talk About Sex (and Breast Cancer) –Hear Me: Communicating With Your Healthcare Team –What Young Women Should Know About Bone Health Over 2,600 combined views In development: –Financial impact of breast cancer –Communicating as a young woman living with metastatic breast cancer –Body image

New Programs: Young Advocate Program Helping young women harness their personal experience to make a difference in their communities Targets women with incomes at or below 200% of the federal poverty guideline and who are within three years of diagnosis or living with metastatic breast cancer. Trained 29 young women to date 8 hour in-person training covering topics on the spectrum of advocacy, breast cancer health disparities and effectively sharing one's personal story of breast cancer. Program participants were required to complete two activities and share LBBC's publications with at least one healthcare provider within six months of training

New Programs: Healthcare Provider Webinars Developed webinars for healthcare providers to help them work more effectively with their young breast cancer patients May 2013 Webinar: “Understanding the Unique Needs of Young Women Affected by Breast Cancer” Sept 2013 Webinar: “Bring it up! How to Talk with Your Young Breast Cancer Patients About Sex” More than 500 healthcare providers participated The majority of the participants reported an increase in knowledge based on their participation in the program.

New Programs: Healthcare Provider Symposium “Understanding the Unique Needs of Young Women Affected by Breast Cancer” - Tuesday, May 27, 2014, Noon-5pm, Baltimore MD A pre-event to the Association of Oncology Social Work Annual Conference Sessions included: –Talk Back: Defining the Needs of Young Women in Your Practice –Fertility: Educational Opportunities, Preservation Options –Let’s Talk About Sex! –Developing Survivorship Programming for Young Women –Living with Uncertainty: Young Women and Metastatic Breast Cancer

Future Programming Twitter Chats Additional webinars for young women Additional webinars for healthcare providers Conference tracks and activities for young women at annual conference and metastatic breast cancer conference

Challenges Faced Measuring impact and outcome Tracking marketing efforts Reaching diverse populations Reaching newly diagnosed women Balance between virtual and physical programming Balance between creating inclusive general programming that meets the needs of young women and creating tailored programs just for young women

Questions? Contact Information: Arin Ahlum Hanson, MPH, CHES Manager, Young Women’s Initiative (484)

National Needs Assessment Findings 1.More healthcare providers should discuss the potential impacts of treatment on fertility with premenopausal women prior to cancer treatment. 2.All young women should receive genetic counseling when they receive genetic testing. 3.Many women diagnosed with breast cancer before age 45 report side effects many years after completing treatment. 4.Young women affected by breast cancer are interested in a wide range of breast cancer information topics. 5.Most young women prefer to receive breast cancer information via the Internet, and many use social media to access breast cancer information and connect with other survivors.

National Needs Assessment Findings 6.Young women want breast cancer information and emotional support tailored to their age group but many have difficulty finding this information and support. 7.Women diagnosed with breast cancer before age 30, African- Americans, Latinas and women living with metastatic breast cancer report different concerns and interests compared to other groups of young women. 8.There are limited national educational programs for young women affected by breast cancer. There are even fewer resources for traditionally underserved subgroups of young women, such as women of color, women living with metastatic breast cancer and lesbian, gay, bisexual, transgender and queer (LGBTQ) people.