The unique reproductive and psychological health needs of young breast cancer survivors are often unmet. ICF did an evaluation of 7 organizations that offer tailored support and education services to young breast cancer survivors. With increased funding, organizations are better able to develop and enhance young breast cancer survivor-focused initiatives.

1. Building the Case for Expanded Support Services to Young Breast Cancer Survivors:
An Evaluation of a Cooperative Agreement
Authors:
ICF International - Sarah O’Dell, MPH, Marnie House, EdD, MPH, Mary Ann Hall, MPH
Centers for Disease Control and Prevention - Angela Moore, MPH, Temeika Fairley, PhD
References:
1. Milstein, R. L., Wetterhall, S. F., & the CDC Evaluation Working Group. (1999). Framework for program evaluation
in public health. Morbidity and Mortality Weekly Report, 48(RR-11), 1–40.
2. Patton, M. Q. (1997). Utilization-focused evaluation: The new century text. Thousand Oaks, CA: Sage.
Exhibit 2: DP11-1111 Program Framework
Results
Description of support services and educational resources implemented
Organizations dedicated to supporting YBCS offer a range of services including psychosocial support and education to YBCS, YBCS caregivers, and healthcare providers. Services offered cover the cancer care
continuum, from community outreach and education via multiple platforms (partnership development, online resource compilations, social media, education for healthcare providers) to structured support services
(patient navigation, structured support plans, tailored support groups for survivors and caregivers, healthcare systems-level interventions to improve access to existing services). Exhibit 3 provides an overview of
each program and the main strategies used to reach their intended audience(s).
Factors affecting implementation
The factors affecting organizations’ implementation of support services and educational resources for YBCS include:
• Reach to and understanding of the needs of the target population
• Organizational leadership support
• Organizational and staff capacity
• Access to and input from individuals from external organizations with expertise in
• YBCS issues (i.e., healthcare professionals, social workers, community leaders)
Background
The unique reproductive and psychosocial health needs of young breast cancer
survivors (YBCS), defined as women diagnosed with breast cancer prior to 45 years
of age, are often unmet, and there is limited evidence to support the use of strategies
that can effectively mitigate the short- and long-term effects of breast cancer in this
population. To address this gap, the Centers for Disease Control and Prevention
(CDC) established a 3-year cooperative agreement (CA) in 2012 with seven
organizations to offer tailored support and education services to YBCS under the
Funding Opportunity Announcement DP11-1111, Developing Support and Educational
Awareness for Young Breast Cancer Survivors in the United States.
ICF International was contracted by CDC to conduct a process evaluation of the
DP11-1111 CA grantees and five non-funded organizations implementing programs
targeting YBCS, their loved ones, and their healthcare providers. The overall
objectives were: (1) to understand the implementation process for initiatives to
develop educational resources for and to provide support services to these audiences;
(2) to provide lessons learned and recommendations for other organizations seeking
to serve YBCS; and (3) to inform the development of promising practices to meet the
reproductive and psychosocial health needs of YBCS.
Methods
The evaluation of the CA is grounded in CDC’s Framework for Program Evaluation in
Public Health1 and in Utilization-Focused Evaluation,2 and employs a multiple case
study design using qualitative methodology. Exhibit 1 provides an overview of the
evaluation approach.
Exhibit 1: Evaluation Approach
Using purposeful sampling, 12 organizations (cases) were selected. Data collection
activities included document reviews, site visits, program observations, and in-depth
interviews with program leadership, program staff, and partners. Thematic analysis of
the collected data was used to address each evaluation question.
Exhibit 2 depicts the DP11-1111 Program Framework, which helped to guide the
evaluation.
Exhibit 3. Description of YBCS Programs
Programs Funded Under the DP11-1111 Cooperative Agreement
Organization Program Description
Living Beyond Breast
Cancer (LBBC)’s Young
Women’s Initiative (YWI)
• Created the Breast Cancer Helpline to increase opportunities for young women to receive peer support
• Educated healthcare providers about the unique needs of young women affected by breast cancer
• Expanded programming and resources for key priority groups (e.g., women diagnosed before age
30, women living with metastatic breast cancer, and African-American and Latina women)
Louisiana State University
(LSU) Health Sciences
Center’s Young Breast
Cancer Survivors
Program
• Offered patient navigation services for YBCS (including an automated flagging system to identify
newly diagnosed YBCS in the electronic medical records system)
• Delivered regional and online support groups tailored for YBCS, families, and caregivers
• Developed and implemented topic-specific workshops designed to address the unique needs of
various groups of YBCS
Sharsheret’s Thriving
Again Program
• Developed culturally relevant materials for YBCS of Jewish heritage, which includes tailored and
personalized survivorship kits
• Attended and presented at educational teleconferences for various audiences
• Offered telephone-based professional and peer support
John C. Lincoln (JCL)
Health Foundation’s
Young Breast Cancer
Survivor Support Initiative
• Developed the Arizona Breast Cancer Resource Guide, an online resource that collates existing
resources into a single comprehensive guide
• Coordinated community education events and support groups throughout the state of Arizona
• Distributed existing breast cancer information and materials to YBCS
University of North
Carolina at Chapel Hill
(UNC)-Chapel Hill’s Lean
Kaizen Initiative
• Conducted Lean Kaizen events to identify waste within healthcare provider processes, and rapid process
improvement activities aimed at increasing provider efficiency during rapid implementation cycles
• Held system design events that focus on engaging providers in implementation and maintenance of
rapid process improvements to improve efficiency
• Developed and maintained centralized list of existing support services within the UNC hospital
system (updated weekly)
Washington University
at St. Louis’s Young
Women’s Breast Cancer
Program (YWBCP)
• Enhanced the Young Women’s Peer Network to increase knowledge of local resources and improve
skills for managing the healthcare system and medical decision-making among YBCS
• Developed a patient coaching program to capture newly diagnosed YBCS at an earlier point in the
treatment process
• Offered specialized support groups designed to increase perceived peer support among YBCS,
their families, and caregivers
• Created a Genetic Navigation Workbook to increase YBCS’ knowledge of family-based cancer risk
assessment and genetic testing
University of California,
Los Angeles (UCLA)’s
Young Breast Cancer
Survivorship Program
• Developed and implemented a psychosocial/psychoeducational program, which offers YBCS,
families, and caregivers access to support groups. One session of the program focuses on goal
setting; the second session focuses on tailored discussions about relationships
• Developed an online resource library, which is a searchable database that houses region-specific
resources tailored for various user types (e.g., YBCS, families, providers)
Programs Not Funded Under the Cooperative Agreement
Knight Cancer Institute
Adolescent and Young
Adult (AYA) Oncology
Program at the Oregon
Health & Science
University
• Offered medical and support services to adolescents and young adults ages 15-39
• Conducted one-hour consultations with patients and AYA oncologist to address patients’ questions,
explain treatment processes, and develop a survivorship care plan and treatment summary
• Referred patient to other internal and external resources, such as clinical trials, support groups for
AYA cancer patients and for their caregivers, classes and educational workshops, peer networks,
the Children’s Healing Art Project, and the First Descents program
The Program for Young
Women with Breast
Cancer at the Dana-
Farber/Brigham and
Women’s Cancer Institute
• Supported and informed YBCS patients of resources available to them, which include:
––Telephone support groups
––Educational events, forums, and workshops
––Financial and legal assistance
––Immediate referral to fertility and genetic specialists
––Social workers, patient navigators, and peer supporter buddies
Tigerlily Foundation • Conducted peer education workshops and other events to raise awareness of YBCS issues
• Identified financial assistance resources for YBCS
• Implemented the use of social media to facilitate YBCS connections through group discussions and
networking
The Young Women’s
Breast Cancer
Translational Program at
the University of Colorado
at Denver
• Enhanced access to services through evening clinic hours and home follow-up care
• Referred patients to the oncofertility program to help YBCS with family planning, as well as
additional support groups and resources
• Offered patient navigation to help YBCS patients through the cancer journey (diagnosis through
survivorship)
Young Survival Coalition
(YSC)
• Educated YBCS through the use of resource link tool and resource kits
• Empowered women through education and awareness raising events
• Connected YBCS via face-to-face meetings (YSC Face 2 Face F2F), meetup.com, and online
bulletin boards which currently have over 1,000 people in participating
Development of key partnerships
Among grantees, most reported that CA funding enhanced their capacity to develop
and/or enhance YBCS-focused initiatives; in the absence of this funding, many were
unsure if they would have been able to implement YBCS activities to the same extent.
Grantees also noted that CDC supported communication opportunities among funded
entities (such as conference calls, in-person meetings, and emails), and provided a
forum to discuss activities implemented, challenges faced, and lessons learned. This
opportunity proved to be a valuable resource for grantees.
Perceived impact on awareness of, access to, and utilization of support services and
educational resources among YBCS, healthcare providers, and caregivers
Across all participating organizations, respondents stated that current YBCS initiatives
helped to address gaps in existing services and information available to these
audiences. Many interviewees felt their initiatives increased the visibility of YBCS’
unique needs via multiple platforms (e.g., presentations at conferences, use of social
media, provider education activities). In addition, many of the organizations funded
through the CA have been able to use program data to demonstrate how funding has
supported expansion of education and support activities.
Conclusion
Findings from this evaluation demonstrate the utility of federal funds to help
organizations increase capacity to support and implement YBCS-focused activities
through the creation of new or augmentation of existing resources and services. The
CA supported increased capacity among a number of leading organizations serving
YBCS and helped to develop communities of learning and engagement among funded
entities. However, more empirical evidence is needed to develop the evidence base
for interventions that are most effective in meeting the psychosocial needs of YBCS.