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),definedaswomendiagnosedwithbreastcancerpriorto45yearsof 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 DP11-1111CAgranteesandfivenon-fundedorganizationsimplementingprogramstargeting 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 AgreementOrganization Program DescriptionLiving 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

• OfferedpatientnavigationservicesforYBCS(includinganautomatedflaggingsystemtoidentifynewly diagnosed YBCS in the electronic medical records system)

• Delivered regional and online support groups tailored for YBCS, families, and caregivers• Developedandimplementedtopic-specificworkshopsdesignedtoaddresstheuniqueneedsof

various groups of YBCSSharsheret’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 improvementactivitiesaimedatincreasingproviderefficiencyduringrapidimplementationcycles

• Held system design events that focus on engaging providers in implementation and maintenance of rapidprocessimprovementstoimproveefficiency

• 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

• Developedanonlineresourcelibrary,whichisasearchabledatabasethathousesregion-specificresources tailored for various user types (e.g., YBCS, families, providers)

Programs Not Funded Under the Cooperative AgreementKnight Cancer Institute Adolescent and Young Adult (AYA) Oncology Program at the Oregon Health & Science University

• Offeredmedicalandsupportservicestoadolescentsandyoungadultsages15-39• 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• IdentifiedfinancialassistanceresourcesforYBCS• Implemented the use of social media to facilitate YBCS connections through group discussions and

networkingThe 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.