1. Thriving Again: Breast Cancer Survivorship Program for Young Jewish Women © Sharsheret 2014 Rochelle Shoretz Founder and Executive Director Sharsheret This program is supported by the Cooperative Agreement DP11-1111 from The Centers for Disease Control and Prevention.

2. © Sharsheret 2014 At the end of this lecture, you will be able to: ABOUT SHARSHERET Sharsheret, Hebrew for “chain”, is a national not-for-profit organization supporting young Jewish women and their families facing breast cancer. Our mission is to offer a community of support to women diagnosed with breast cancer or at increased genetic risk, by fostering culturally-relevant individualized connections with networks of peers, health professionals, and related resources.

3. 1.Conduct a needs assessment of young Jewish breast cancer survivors. 2.Create and implement a detailed program plan based on assessment. 3.Continually monitor program success and conduct evaluation during final grant year. © Sharsheret 2014 At the end of this lecture, you will be able to: GRANT GOALS With a grant from the CDC, Sharsheret set out to:

4. Key Informant Interviews & National Advisory Board Literature Review Focus Groups National Survivorship Survey © Sharsheret 2014 PROGRAM DEVELOPMENT

5. © Sharsheret 2014 PROGRAM DEVELOPMENT Key Informant Interviews and National Advisory Board Conducted 24 phone interviews with experts in the field, medical professionals, and breast cancer survivors. Invited 14 members of this group to join a National Survivorship Advisory Board that provides continued guidance on evolving research and our program. Advisory Board is comprised of professionals in various fields, including oncologists, breast surgeons, genetic counselors, social workers, researchers, nurse navigators, and nonprofit leaders.

6. © Sharsheret 2014 PROGRAM DEVELOPMENT Literature Review A “living document” that evolves as research is published. Examples of sources include: –“Implementing a survivorship care plan for patients with breast cancer.” Journal of Clinical Oncology (2008). –“Crisis, social support, and the family response: Exploring the narratives of young breast cancer survivors.” Journal of Psychosocial Oncology (2010).

7. © Sharsheret 2014 PROGRAM DEVELOPMENT Focus Groups Conducted 6 national focus groups of self- identified young Jewish breast cancer survivors. –4 in person: New York, Los Angeles, Chicago, Atlanta –2 online

8. © Sharsheret 2014 PROGRAM DEVELOPMENT National Survivorship Survey Received 900+ national survivorship survey responses. Partnered with 40 health care and Jewish organizations to distribute the survey in paper and online formats. Publicized survey at conferences and through social media. –Successfully utilized targeted advertising through Facebook to reach our desired audience.

9. Women identify as “survivors” at various stages of their breast cancer journey. Needs and concerns are unique to each woman and cannot be categorized by diagnosis or treatment stage. Women prefer to choose for themselves what information they receive and when they receive it. Women would like to receive both information and action-based tools to help them implement healthy living. © Sharsheret 2014 At the end of this lecture, you will be able to: KEY FINDINGS

10. © Sharsheret 2014 KEY FINDINGS What did Sharsheret learn from the development process? Fertility Family planning Finance Health insurance Relationships and intimacy Parenting and children Work and employment Genetics Exercise Identified the unique concerns of young Jewish breast cancer survivors:

11. © Sharsheret 2014 Thriving Again: Comprehensive Breast Cancer Survivorship Program PROGRAM COMPONENTS Professional and Peer Support Educational Teleconferences Survivorship Care Plan Personalized Survivorship Kit PROGRAM COMPONENTS

12. © Sharsheret 2014 PROGRAM DEVELOPMENT Professional and Peer Support Access to Sharsheret’s 12 national support and education programs Peer support network of more than 3,000 women 4 staff clinicians: licensed social workers, psychologist, genetic counselor PROGRAM COMPONENTS

13. © Sharsheret 2014 PROGRAM COMPONENTS Educational Teleconferences Free national teleconferences on topics identified during development process –It’s Complicated: Understanding and Managing Relationships As a Breast Cancer Survivor –“Am I A Survivor?” What You Should Know Now About Breast Cancer Survivorship –Breast Cancer Survivors: What You Need To Know About Recent Developments In Genetics Total teleconference participants: 362

14. © Sharsheret 2014 Basic Information Contact information for medical and support team members PROGRAM DEVELOPMENT Survivorship Care Plan PROGRAM COMPONENTS

15. © Sharsheret 2014 Medical Information Diagnosis Surgeries Treatment Reconstruction Follow-up care recommendations SURVIVORSHIP CARE PLANSPROGRAM COMPONENTS Survivorship Care Plan

16. © Sharsheret 2014 Self-Assessment Anxiety Fatigue Family Relationships SURVIVORSHIP CARE PLANSPROGRAM COMPONENTS Survivorship Care Plan

17. The American College of Surgeon’s Commission on Cancer’s 2012 Cancer Program Standards call for medical centers to develop and implement a process to provide a comprehensive treatment summary and follow-up plan to patients who are completing treatment by 2015. American College of Surgeons. “Cancer Program Standards 2012: Ensuring Patient-Centered Care.” Version 1.2.1 (2012): 78. © Sharsheret 2014 NEW ACCREDITATION STANDARDS Survivorship Care Plan

18. Only 20.2% of oncologists reported always/almost always providing survivorship care plans. Journal of the National Cancer Institute. “Use of Survivorship Care Plans in the United States: Associations with Survivorship Care” (2013). Fewer than one-half (43%) of NCI-designated cancer centers deliver survivorship care plans to their breast or colorectal cancer survivors. CA: A Cancer Journal for Clinicians. "Survivorship Care Plans in Research and Practice” (2012). © Sharsheret 2014 NEW ACCREDITATION STANDARDS Survivorship Care Plan

19. © Sharsheret 2014 PROGRAM COMPONENTS Personalized Survivorship Kit Free survivorship kits are tailored to each woman and include: –Choice of healthy living cookbook (kosher and non-kosher) –Choice of fitness DVD (various levels of impact) –Self-selected educational information and resources

20. © Sharsheret 2014 WHERE WE ARE Survivorship Kits Distributed1,146 Health Care Professional Kits Distributed 115 Thriving Again Educational Booklets Distributed 1,500+ Conferences Exhibited20 Survivorship Presentations8 At-A-Glance OUTCOMES

21. WHERE WE ARE Presentations:Exhibits: American Society of Clinical Oncology National Society of Genetic Counselors Oncology Nursing Society Congress San Antonio Breast Cancer Symposium © Sharsheret 2014 OUTCOMES National Conferences Association of Oncology Social Workers National Consortium of Breast Centers C4YW Association of Oncology Nurse Navigators Critical Mass: The Young Adult Cancer Alliance

22. © Sharsheret 2014 WHERE WE AREFEEDBACK “I particularly appreciate the sheets to fill out for future appointments and medical history, especially once I am out of acute treatment later this fall. There are surprisingly not many resources like this where all of the important details are kept in one place.” - Meaghan, Breast Cancer Survivor “The survivorship kit really helped me to gain some quiet-time perspective....This helped me connect to who I was (before diagnosis) and to who I've become (after diagnosis). I understand that more changes will occur, but I feel more centered rather than off- balanced.” - Sherri, Breast Cancer Survivor

23. © Sharsheret 2014 WHERE WE ARENEXT STEPS 1.Evaluation process began in early 2014 –Conducted focus groups –Distributed online evaluation survey 2. Complete analysis of initial evaluation survey and focus groups 3. Disseminate evaluation findings 4. Create and implement sustainability plan

24. © Sharsheret 2014 CONNECT WITH US 866.474.2774 www.sharsheret.org For more information about Sharsheret or Thriving Again