Living Beyond Breast Cancer Young Women’s Initiative

1. Living Beyond Breast CancerYoung Women’s Initiative Arin Ahlum Hanson, MPH, CHES Manager, Young Women’s Initiative Living Beyond Breast Cancer www.lbbc.org April 16, 2012

2. 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. • Over 15 years of experience providing tailored programs for young women affected by breast cancer.

3. LBBC Programs • Three national conferences • Monthly Teleconferences • Insight, LBBC’s educational newsletter • Over 15 publications covering diverse breast cancer topics • Community meetings and outreach programs in the Philadelphia area • Survivors’ Helpline, peer-to-peer telephone support • Training and resources for healthcare providers • Lbbc.org, our interactive website

4. C4YW: Annual Conference for Young Women Affected by Breast Cancer • C4YW is the only international conference dedicated specifically to the issues faced by young women affected by breast cancer. • LBBC co-hosts this yearly 3-day conference with the Young Survival Coalition. • Approximately 800 participants attend each year from across the country and world. • 3 plenary sessions, 26 workshops. • Save the Date! February 22-24 in Bellevue, WA.

5. Young Women’s Initiative Purpose: To identify the unique needs of young women affected by breast cancer and develop new programs and expand existing programs for this community. • Building upon LBBC’s15 years of experience offering tailored programs for young women. 1St Year Activities • Conduct multi-component needs assessment. • Establish Advisory and Outreach Network of over 40 members. • Expand our online content for young women. • Engage key stakeholders and community organizations serving underserved groups in needs assessment and program planning. • Utilize our needs assessment findings to guide our program planning efforts.

6. YWI - Needs Assessment Needs Assessment Components • Key informant interviews with healthcare providers and cancer advocates • Focus groups with young women • Environmental scan and gap analysis • National survey of young women

7. YWI - Key Informant Interviews • 12 interviews completed with two medical oncologists, a prominent cancer advocate, an oncology social worker, a leader in psycho-oncology, a reproductive endocrinologist, a breast surgeon, a breast cancer coordinator and cancer advocates who work closely with Latina, African-America and Asian young women affected by breast cancer. • Interviewees were asked to identity: • Three most pressing needs of young women. • Resources and programs they use when working with young women • Types of programs they would like to see developed for this population. • Primary needs identified were: • Lack of social support • Strain on personal relationships • Raising young children • Financial concerns • Body image • Preliminary findings were integrated into the quantitative survey tool. • A full analysis of the interview notes and audio recordings will be completed by June 2012.

8. YWI - Focus Groups Four focus groups with young women that were: • Diagnosed less than one year ago with early stage breast cancer • Diagnosed 2-5 years ago with early stage breast cancer • Diagnosed more than five years ago with early stage breast cancer • Living with metastatic breast cancer Demographic Information of C4YW Focus Groups (Early Stage) • 20 women participated in three groups • Average age was 40 years old (age range: 30 to 64 years old) • 85% of the women are married or living as married. • 60% had a college degree or graduate degree. • 26% were African American, 11% were Latina and 56% were white. • Participants from all four regions of the United States

9. YWI - Focus Groups Preliminary Findings from the C4YW Focus Groups (women with early stage) • Concerns about impact of breast cancer experience on partners and children. • Challenges with communication with their friends and family. • Difficult to find quality survivorship programming for young breast cancer survivors. • Newly diagnosed and mid-term survivor groups shared about their use of social media to access health information, connect with other breast cancer survivors and update their friends and family about their treatment and overall health. • Many in the newly diagnosed group expressed a need for breast cancer information to be tailored to their life stage. • Lack of support and information at the end of treatment and the need for more information on long-term side effects and other survivorship concerns was a theme of the mid-term and long-term survivor focus groups. Next Steps • Hold last focus group with young women living with metastatic breast cancer on April 27, 2012. • Focus groups will be fully analyzed and will be compared with the other needs assessment components.

10. YWI - Environmental Scan and Gap Analysis Purpose: To identify existing resources for young women affected by breast cancer, areas lacking in coverage and potential partner organizations. • 29 national organizations that provide educational and support resources relevant to young women affected by breast cancer were analyzed. Program Areas • Under resourced program areas were managing short-term and long-term side effects of treatment (fatigue management, premature menopause, cognitive changes, etc) and aftercare compliance. Content Delivery • Content delivery methods that appeared less frequently were live conferences, online message board communities, thematic workshops and teleconferences. Tailored Programming • Few programs targeting young women of color affected by breast cancer and young lesbian, bisexual, transgendered or gay women.

11. YWI - National Survey of Young Women Survey is designed to identify the unique needs of young women, what breast cancer information these women are looking for and how they would like to receive this information.   • Survey will launched by end of April. Please help us spread the word! • Survey domains include: • Demographic factors • Breast cancer treatment • Social support • Ethnic identity • Common side effects • Use of and interest in breast cancer education programs • Fertility preservation, breast reconstruction and genetic testing decision making • Distribution methods will include: • Outreach Network of more than 30 organizations • Social media outreach • Purchasing Facebook Ads • Survey link sent to young women in LBBC’s database

12. YWI – Looking Forward Second Half of Year 1 • Finish needs assessment and analyze the results • Develop white paper summarizing needs assessment • Convene 2-3 strategy building focus groups with undeserved women • Complete program planning efforts Program Implementation in Year 2 • Disseminate the needs assessment findings • Continue to expand online content for young women • Enhance the capacity of the Survivors’ Helpline by training ten additional young Helpline volunteers • Increase the geographic diversity and participation rates of low-income women at C4YW • Develop a new pilot program for underserved young women

13. Questions? Contact Information: Arin Ahlum Hanson, MPH, CHES Manager, Young Women’s Initiatve arin@lbbc.org 484-708-1546