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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.
© 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.
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:
Key Informant Interviews &
National Advisory
Board
Literature Review
Focus Groups
National Survivorship
Survey
© Sharsheret 2014
PROGRAM DEVELOPMENT
© 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.
© 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).
© 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
© 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.
• 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
© 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:
© Sharsheret 2014
Thriving Again: Comprehensive Breast Cancer Survivorship Program
PROGRAM COMPONENTS
Professional and Peer Support
Educational Teleconferences
Survivorship Care PlanPersonalized
Survivorship Kit
PROGRAM COMPONENTS
© 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 COMPONENTSPROGRAM COMPONENTS
© Sharsheret 2014
PROGRAM COMPONENTSEducational 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
© Sharsheret 2014
• Basic Information
• Contact information for medical and support team members
PROGRAM DEVELOPMENT Survivorship Care Plan
PROGRAM COMPONENTS
© Sharsheret 2014
Medical Information
• Diagnosis• Surgeries• Treatment• Reconstruction• Follow-up care
recommendations
SURVIVORSHIP CARE PLANS PROGRAM COMPONENTSSurvivorship Care Plan
© Sharsheret 2014
Self-Assessment
• Anxiety• Fatigue• Family• Relationships
SURVIVORSHIP CARE PLANS PROGRAM COMPONENTSSurvivorship Care Plan
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
• 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
© Sharsheret 2014
PROGRAM COMPONENTSPersonalized 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
© Sharsheret 2014
WHERE WE ARE
Survivorship Kits Distributed 1,146
Health Care Professional Kits Distributed
115
Thriving Again Educational Booklets Distributed
1,500+
Conferences Exhibited 20
Survivorship Presentations 8
At-A-Glance
OUTCOMES
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
OUTCOMESNational Conferences
• Association of Oncology Social Workers
• National Consortium of Breast Centers
• C4YW• Association of Oncology
Nurse Navigators • Critical Mass: The Young
Adult Cancer Alliance
© 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
© 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
© Sharsheret 2014
CONNECT WITH US
866.474.2774www.sharsheret.org
For more information about Sharsheret or Thriving Again
