Sister Survivor: Improving Access to Survivorship Care Plan

Institution: Women of Color
Investigator(s): Florence Britton,  - Kimlin Ashing, Ph.D. -
Award Cycle: 2011 (Cycle 17) Grant #: 17BB-1001 Award: $93,750
Award Type: CRC Full Research Award
Research Priorities
Community Impact of Breast Cancer>Disparities: eliminating the unequal burden of breast cancer

This is a collaboration with: 17BB-1000 -

Initial Award Abstract (2011)

Introduction: Our pilot study showed that African–American breast cancer survivors (AABCS) had unmet healthcare resources needs. Therefore, we will implement a peer navigator (PN) intervention and evaluate its impact on access and adherence to survivorship care planning (SCP) to increase access to health preserving and life saving resources. The trial will compare the outcomes of AABCS who are randomly assigned to receive 5 peer navigation sessions and materials (informational brochure) or materials, only. This study capitalizes on the mission and strengths of Carolyn Tapp at Women of Color Breast Cancer Survivors Support Project and current lead organization of our Sister Survivor: African American Breast Cancer Survivor Coalition, and Dr. Kimlin Ashing-Giwa who are working together to benefit the community.

Primary Hypotheses: H1. Subjects receiving the PN intervention will have greater access to a SCP from their oncology provider at 3 months, relative to pre-intervention baseline and adjusted for subjects’ demographic and clinical characteristics, and other confounding variables (i.e., treating facility; insurance).

Secondary Hypotheses: H2. Participants in the PN condition will have greater medical efficacy at 3 months; H3: Participants in the PN condition will have greater improvement at 3 months in preparedness for life as a new survivor; H4. Participants in the PN condition will have greater improvement at 3 months in physical functioning; H5. Socio-ecological factors including higher income, education and higher income zip-codes will be associated with overall better HRQOL outcomes; H6. Participants in the PN condition will have greater access to a SCP from their oncology provider at 12 months; H7. Socio-ecological factors and PN condition will be associated with adherence at 12 months to SCP recommendations.

Methodology: 25 PN will be trained to provide navigation to AABCS recruited from the California Cancer Registry, collaborating support groups, hospitals, clinics, and civic and religious organizations. 120 participants will be randomized to either PN intervention (n=60) or control (n=60) conditions. The peer navigation sessions will be delivered via face-to face or by telephone. The Peer Navigator trial is accomplished through 5 processes: 1) Information: PN provide education and resources about the effects of breast cancer and its treatments, care planning, physical functioning; 2) Patient activation: coaching in medical efficacy and communication; 3) Providing support: PN listen, share, and attend to the human side; 4) Access: facilitate utilization of healthcare resources/services, access to SCP; 5) Coordination: facilitate utilization of healthcare, adherence to SCP.

Innovative elements: The findings from this project have the potential for translation into broad community benefit and community clinical practice by 1) increasing understanding and adherence to SCP for improving follow-up care and reducing the medical, physical and survivorship burden among AABCS, 2) providing outcomes on the effectiveness of PN to inform the growing body of work on diverse models of survivorship care, and 3) coalition and research capacity building among the Sister Survivor Coalition. In an effort to improve outcomes and potentially reduce morbidity and increase disease free survival, our proposed intervention study addresses major health care resources concerns of BCS via a community-based, cost effective, scientifically rigorous and evidence-based approach.

Community involvement: Carolyn Tapp, Sister Survivor Coalition and Dr. Kimlin Ashing-Giwa are equitable partners. We have an active community advisory committee that includes other grass-roots and larger advocacy groups (e.g., ACS) to guide us. Each Coalition leader takes a key role: Ms. Tapp chairs the community advisory committee and leads on PN, recruitment and protocol development; Ms. Holbert-Santifer at Celebrate Life is our media spokes-person; Ms. Clark from Healthy Heritage is advertising director; Ms. Martin at Sisters BC Support Network leads on the community resources; Ms. Vickie and Mark Race from Faith Hope and Charity lead on community engagement; Ms. Mitchell at QCOC/Witness Project leads on PN trainings; and Ms. McDowell at KSIBCF leads on findings, interpretation and dissemination.

Future Plans: We will disseminate our findings through traditional scientific/academic avenues like journal articles and conference presentations. We will disseminate our findings to the community through community forums, community-based organization websites including ACS, and established African-American support groups, African-American newspapers including the Sentinel, Journal and Voice. These efforts are to inform community members and leaders about social support needs, collaborative efforts to advance clinical and community based research, and practices to improve outcomes for our most vulnerable survivors. Our future goal is to expand the reach of this research program outside our original geographic area to benefit AABCS and other underserved BCS nationally. We plan to evaluate the effectiveness of PN via a multisite study with support groups in California, New York and New Orleans.

Final Report (2015)

The Sister Survivor Study was a collaborative, community-based participatory study that aimed to help African American breast cancer survivors (AABCS) be better informed and empowered to obtain from their oncology care team a treatment summary and survivorship care plan (TSSCP). The TSSCP includes a comprehensive breast cancer diagnosis and treatment record, detailed after-care tests, surveillance, and resources for optimal survivorship.

Participants were randomly assigned to receive a written booklet, or a written booklet plus peer-navigation. All participants received the resource book titled: “Embracing Hope” that included a blank form of the TSSCP. The peer navigation consisted of five weekly, 40-minute navigation sessions delivered in-person or via telephone by a peer navigator (an African American survivor trained to deliver the sessions). All participants completed a self-report questionnaire at the beginning of the study, and then at 6 and 12 months post-intervention.

A total of 112 AABCS enrolled and 78 completed the study. At the beginning of the study, no one had a comprehensive TSSCP; however, at 6 months 45% and 64% at 12 months had received a personalized TSSCP from their oncology team. At follow-up, participants were more likely to follow clinical guidelines for breast self-exams (67% at 6 months; 80% at 12 months) and breast imaging (72% at 6 months and at 12 months). Participants’ confidence in their knowledge of cancer, treatment, and survivorship information increased. After participating in the study, 67% of AABCS were aware of the importance of participating in clinical studies and 73% would recommend the study to other survivors.

Currently, there is a lack of community inclusion in implementation of research interventions. We successfully trained peer navigators to educate and implement a SCP intervention with African Americans, a population that is historically medically underserved and, thus, enhanced community capacity. The intervention resulted in statistically significant improvements in outcomes; however, we found no statistically significant differences in outcomes between women who received peer navigation and those who did not. Thus, to optimize the effectiveness of peer-based trials, training of peer navigators should be extensive, with a full day dedicated to each domain in the template. In the future, the scientific and community partners plan to independently continue larger community-partnered projects to improve cancer survivorship in populations at risk for poor health outcomes.

Symposium Abstract (2016)

Evaluating a Clinically and Culturally Informed Survivorship Care Plan Trial for African American Breast Cancer Survivors

Kimlin Tam Ashing1 (, Mayra Serrano1, Aria M. Campbell1, Kommah McDowell2, Shirley Brown2, Lily L. Lai3
Center of Community Alliance for Research and Education (CCARE), City of Hope, Duarte, CA; 1
Sister Survivor Coalition (CCARE)2; City of Hope National Medical Center, Duarte, CA 3

Background: This randomized control study was designed to evaluate the impact of trial participation on access to survivorship care planning (SCP) and adherence to surveillance recommendations among AABCS.

Methods: AABCS were recruited from the State Cancer Registry and support groups. This trial consisted of 1:1 randomization into two conditions: 1) peer navigation + clinically- and culturally-informed breast cancer (BC) materials, and 2) clinically- and culturally-informed BC materials, only. AABCS (N= 29) from advocacy groups were trained as peer navigators, with on-going supervision and monitoring by the research team. The ASCO-SCP template was modified based on input from survivor-advocates to increase clinical, cultural, and socio-ecological relevance. The study was implemented using community based-participatory approach. Mailed, self-report assessments were taken at baseline and at 6- and 12-month follow-up.

Results: In total, 112 AABCS who were 6-18 months post initial primary treatment for stage 0-3 BC participated in the study. There was a 74% participation rate and a 64% completion rate. At 6- and 12-month follow-up, 45% and 64% reported access to a SCP, respectively. Improvements from baseline in adherence to SCP surveillance recommendations were observed at 6- and 12- month follow-up assessments regarding physical exam (42.0%, 59.8%, 70.5%, respectively), pelvic exam 36.6%, 47.3%, 44.6%, respectively), breast self-exam (56.1%, 67.3%, 79.6%, respectively), and breast imaging (56.1%, 72.4%, 72.4%, respectively) (p< 0.05). There we no significant demographic, medical or study outcome differences by study condition.

Conclusions: Our study findings demonstrate the effectiveness of trial participation in facilitating access to SCP and improved adherence to recommended surveillance. Participation of survivor-advocates in developing culturally-informed BC informational and survivorship care strategies can enhance acceptability and sustainability, especially in community and primary care settings. Untapped opportunities exist for survivor-advocate engagement in survivorship research and practice to address inequities.

Are survivorship care plans responsive to African-American breast cancer survivors?: Voices of survivors and advocates
Periodical:Journal of Cancer Survivorship
Index Medicus:
Authors: Kimlin Ashing-Giwa, Carolyn Tapp, et al.
Yr: 2013 Vol: 7 Nbr: 3 Abs: Pg:283-291