Financial Burden Experiences of Black/African American Breast Cancer Survivors: A Meta-ethnography.

61 Background: There are nearly 3 million breast cancer (BC) survivors in the US. Among the recently diagnosed, accrediting organizations (e.g., Commission on Cancer) now require SCPs at the completion of curative therapy. Within the Oncology Care Model, the preparation and delivery of SCPs is recognized as one of the 13 quality metrics. SCPs, combining treatment summaries (TS) and follow-up care plans (FUCPs), assist patients and providers in the delivery of high quality long-term care. BC presents a unique challenge, as the risk of recurrence extends decades past initial treatment; adjuvant risk reduction may extend up to 15 years. Periodic FUCPs provide a mechanism to review updated information and may allow providers to catch up with longer term BC survivors whose care was delivered prior to SCPs. We explored the role of phase-specific SCPs within the heterogeneous BC survivor population. Methods: Oncologists and nurse practitioners (NPs) from the Breast Health and Survivorship Programs at Tufts MC, an academic medical center in Boston, and New England Cancer Specialists, a community-based private oncology practice in Maine--together caring for more than 2,000 BC survivors--convened to develop and test phase-specific survivorship tools. Using an adapted ASCO template for BC, TS were completed at the end of initial therapy by trained NPs. FUCPs for initial, 5-year, and 10-year visits were designed with clinical input, literature reviews, and existing guidelines. Results: FUCPs were pilot tested and refined before incorporation into the electronic health record. Further testing is planned to identify barriers to effective survivorship care, particularly involving documentation of changes in recommendations and the transition from oncologist to primary care physician. Conclusions: SCPs are critical for providing quality health care to BC survivors, but a single SCP, written at the conclusion of curative treatment, might not be sufficient to address changing needs of individuals as they progress through survivorship. Thus, phase-specific SCPs enable providers to focus on salient aspects of care that may change over time. Despite growing recognition of the value of SCPs, implementation remains a challenge across cancer programs.

Background: Recommendations from the Institute of Medicine are that cancer patients receive individualized survivorship care plan (SCP) and treatment summary. SCP includes guidelines for monitoring and maintaining health and is a communication tool shared with families and health care providers. Offering SCP and treatment summary to cancer survivors remains challenging due to time and resource limitations, inadequate reimbursement and survivor access. Methods: Survivorship starts when completing the initial treatment (surgery, chemotherapy or radiation therapy). A team of medical oncologists, nurse practitioner and patient navigator created a process of pre-screening and identifying breast cancer (BC) survivors. SCP and treatment summary were pre-populated, individualized for each patient, then finalized and discussed with the patients during their medical oncology clinic visit. Pre intervention data was retrospectively collected, including all BC cases from March 2014 to March 2015. Post intervention data was prospectively collected over eight weeks. Pre and post intervention SCP completion rates were compared with chi square analysis. Results: A baseline one year review of 1124 encounters noted 23 of 90 (25%) BC survivors received SCP. Ninety-six encounters occurred during the 8 week pilot period. Sixteen (16.6%) cases met the definition of BC survivor. During the pilot period, 15 out of 16 (93.7%) survivors received the SCP and treatment summary (p <0.0001). After the pilot period, 96.4% of BC survivors were seen in the BC survivorship clinic. Conclusions: We successfully piloted the implementation of SCP for BC survivors. Our team found that using clinic visit screening and pre-identifying patients that transition into the survivorship program resulted in improvement of compliance with survivorship measures. In BC survivorship clinic we address specific survivorship issues and review SCP and treatment summary. Citation Format: Danciu OC, Bharadwaj SN, Hoskins K. Cancer team approach for implementing survivorship care plans in the breast cancer survivorship clinic. [abstract]. In: Proceedings of the Thirty-Eighth Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2015 Dec 8-12; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2016;76(4 Suppl):Abstract nr P4-10-02.

107 Background: Recommendations from the Institute of Medicine are that cancer patients receive individualized survivorship care plan (SCP)and treatment summary.SCP includes guidelines for monitoring and maintaining health and is a communication tool shared with families and health care providers. Offering SCP and treatment summary to cancer survivors remains challenging due to time and resource limitations, inadequate reimbursement and survivor access. Methods: Survivorship starts when completing the initial treatment (surgery, chemotherapy or radiation therapy). A team of medical oncologists, nurse practitioner and patient navigator created a process of pre-screening and identifying breast cancer (BC) survivors. SCP and treatment summary were pre-populated, individualized for each patient, then finalized and discussed with the patients during their medical oncology clinic visit.Pre intervention data was retrospectively collected, including all BC cases from March 2014 to March 2015. Post intervention data was prospectively collected over eight weeks. Pre and post intervention SCP completion rates were compared with chi square analysis. Results: A baseline one year review of 1124 encounters noted 23 of 90 (25%) BC survivors received SCP. Ninety-six encounters occurred during the 8 week pilot period. Sixteen (16.6%) cases met the definition of BC survivor. During the pilot period, 15 out of 16 (93.7%) survivors received the SCP and treatment summary (p < 0.0001). Conclusions: We successfully piloted the implementation of SCP for BC survivors. Our team found that using clinic visit screening and pre-identifying patients that transition into the survivorship program resulted in improvement of compliance with survivorship measures. We plan to open a BC survivorship clinic to address survivorship issues and to review SCP and treatment summary.

Cardiovascular risk and communication among early stage breast cancer survivors

Primary goals of cancer survivorship care planning (SCP) include the assessment of ongoing risks for late effects and the coordination of health care. SCP strives to improve communication and coordination between survivors, health-care, and supportive care providers. Results on the effectiveness of SCP have been mixed. We report on the relationship between self-reported indicators of care with two essential elements of SCP: receipt of a written treatment summary and written instructions for routine cancer check-ups. Methods: The Greater Plains Collaborative Clinical Data Research Network conducted the Share Thoughts on Breast Cancer survey across 8 cancer-care delivery sites across the Midwest. Participants were women age 18 years and older who had completed treatment for noninvasive or invasive (but not metastatic) breast cancer diagnosed from 1/1/2013 to 5/1/2014. Women were excluded if diagnosed with lobular carcinoma in situ, had previously been diagnosed with cancer per tumor registry records, did not report having cancer-directed surgery, or did not respond to questions about survivorship care planning. Logistic regression was used to examine characteristics and outcomes associated with a three-category SCP summary variable: (a) received both a written treatment summary and instructions for follow-up care; (b) received only one of these elements; or (c) received neither element. Adjustment variables included age at diagnosis, race, marital status at diagnosis, education, history of smoking, number of comorbidities, self-report that one health professional coordinated cancer care, type of surgery, and treatment with chemotherapy, radiation or hormones, and practice site. Results: Of the 1148 survivors meeting study criteria, 485 (42.2%), 420 (36.6%), and 243 (21.2%) reporting receiving both SCP elements, one element, or no element, respectively. Several factors were associated with receiving elements of SCP: Those who reported having a single health professional who coordinated their cancer care were twice as likely to receive both elements of the SCP vs neither element (OR=2.3; 95% CI 1.6-3.2). Of patients who received both SCP elements, 88% reported excellent/very good quality of care compared to 73% who received neither element (p = .001). Respondents who reported always knowing who to ask questions about their cancer were far more likely to have received both elements vs neither element (OR=10.1; 95% CI 5.2-19.4). No association was observed between SCP and cancer care delivery site. Conclusions: Breast cancer survivors who reported receiving a written summary of treatment and instructions for follow-up care reported better quality of cancer care, and they were also more confident about how to find answers to cancer related questions. Survivors who receive SCP were also more likely to have a single health professional coordinating their cancer care, potentially illustrating how SCP may fit into overall care processes. Citation Format: McDowell BD, Klemp J, Blaes A, Cohee AA, Trentham-Dietz A, Kamaraju S, Otte JL, Rock JL, Rubenstein L, Chrischilles EA. Survivorship care planning is associated with breast cancer survivors' reported quality and coordination of care [abstract]. In: Proceedings of the 2016 San Antonio Breast Cancer Symposium; 2016 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2017;77(4 Suppl):Abstract nr PD4-05.

Background Breast cancer survival rates continue to improve, yet disparities in breast cancer survivorship outcomes (e.g., higher mortality and poorer quality of life) exist. The paucity of culturally sensitive interventions for women from underrepresented racial-ethnic backgrounds only further exacerbates disparities in survivorship care. Young women, less than age 45, who are African American (AA) breast cancer survivors (BCS) experience disparate survivorship outcomes and are often understudied. Without representation, existing frameworks for survivorship care and their delivery may not meet the needs of this growing population of survivors. The purpose of this paper is to describe young AA breast cancer survivorship care in the Deep South (Alabama, Louisiana, and Mississippi) and Midwestern (Ohio) regions. Methods Semi-structured interviews were conducted with young AA BCS and healthcare providers. Fifteen young AA BCS living in the Deep South and six young AA BCS living in the Midwest responded to questions about their lived experiences of breast cancer survivorship including changes in quality of life, adverse effects of diagnosis and treatment, and experiences with/ preferences for survivorship care delivery. Six Midwestern healthcare providers responded to questions about their experiences caring for young AA BCS. Interviews were transcribed verbatim and placed in NVivo 12 software for thematic analysis within and between data from young AA BCS and healthcare providers. Two-independent coders analyzed then iteratively compared codes. Inter-coder agreement was met in determination of the final coding scheme. Results Themes emerged within young AA BCS (mean age = 38 years; years of survivorship = 3 years): management of survivorship along with “everyday” age- and socioculturally-related challenges, communication of survivorship care lacks representation, and care coordination to address survivorship needs is not always ideal. Themes within healthcare provider interviews were: young AA BCS experience changes throughout survivorship that challenge their well-being, care individualization is provided but may not involve cultural humility, and healthcare providers need more training on supportive care options. The cross-cutting theme across all groups indicates that young AA BCS have unmet needs that should be addressed with targeted interventions as they navigate survivorship care. Conclusion Deep South and Midwestern young AA BCS report similar experiences of life after a breast cancer diagnosis, which are largely congruent with healthcare providers’ observations. Despite this concordance between young AA BCS and healthcare providers, survivorship care is often lacking supportive interventions that are targeted to manage the needs of young AA BCS. More work is needed to define best practices for survivorship care that operationalizes cultural humility to promote equitable survivorship outcomes among young AA BCS. Citation Format: Timiya S. Nolan, Sarah Addison, Barbara Andersen, Maryam Lustberg. Different places, same problems: Tales of Deep South and Midwestern young African American breast cancer survivorship care [abstract]. In: Proceedings of the AACR Virtual Conference: Thirteenth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2020 Oct 2-4. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(12 Suppl):Abstract nr PR06.

BackgroundBreast cancer is the most common form of cancer among American women, accounting for 23% of all cancer survivors nationally. Yet, the availability of adequate resources and tools for supporting breast cancer survivors has not kept up with the rapid advancement in treatment options, resulting in unmet supportive care needs, particularly among low-income and minority populations. This study explores an alternative means of delivering breast cancer survivorship care plans (SCPs), with the aim of improving survivor morbidity, patient knowledge, and self-management of treatment-related symptoms, as well as addressing inconsistencies in follow-up care visits.ObjectiveThe overall goal of this study is to improve the uptake of SCP recommendations via an educational intervention for breast cancer survivors, to improve treatment-related morbidity, patient knowledge, self-management, and adherence to follow-up visits. The specific aims of the study are to (1) evaluate the feasibility of the online SCP, and (2) assess the impact of the online SCP on survivorship outcomes.MethodsWe will enroll 50 breast cancer survivors who have completed initial breast cancer treatment into a 2-armed, randomized, waitlist-controlled pilot trial, and collect data at baseline and 6 months. For the first aim, we will use mixed methods, including surveys and personal interviews among the intervention group, to determine the feasibility of providing an online, interactive SCP (called ACESO) based on the survivors’ online user experience and their short-term adoption. For the secondary aim, we will compare the 2 groups to assess the primary outcomes of survivor knowledge, self-efficacy for self-management, perceived peer support, and adherence to SCP-recommended posttreatment follow-up visits to oncology and primary care; and the secondary outcomes of treatment-related morbidity (body weight, fatigue, depression, anxiety, sexual function, distress, and sleep quality). We assess these outcomes by using measurements from validated instruments with robust psychometric properties.ResultsWe have developed and refined the online breast cancer survivorship plan, ACESO, with consultation from breast cancer oncologists, nurses, and survivors. Approval for the study protocol has been obtained from the Institutional Review Board. An advisory board has also been established to provide oversight and recommendations on the conduct of the study. The study will be completed over a period of 2 years.ConclusionsThe results of this pilot study will inform the feasibility and design of a larger-scale pragmatic trial to evaluate the impact of an online breast cancer SCP on treatment-related morbidity and self-efficacy for self-management.International Registered Report Identifier (IRRID)PRR1-10.2196/23414

The overall goal of the present study was to contribute to consistency in the provincial approach to survivorship care planning through knowledge synthesis and exchange. Our review focused on the research concerning the physical and emotional challenges of breast cancer (bca) patients and survivors and the effects of the interventions that have been used for lessening those challenges. The psychosocial topics identified in bca survivorship care plans created by two different initiatives in our province provided the platform for our search criteria: quality of life (qol), sexual function, fatigue, and lifestyle behaviours. We conducted an umbrella review to retrieve the best possible evidence, and only reviews investigating the intended outcomes in bca survivors and having moderate-to-high methodologic quality scores were included. Of 486 reports retrieved, 51 reviews met the inclusion criteria and form part of the synthesis. Our results indicate that bca patients and survivors experience numerous physical and emotional challenges and that interventions such as physical activity, psychoeducation, yoga, and mindfulness-based stress reduction are beneficial in alleviating those challenges. Our study findings support the existing survivorship care plans in our province with respect to the physical and emotional challenges that bca survivors often face. However, the literature concerning cancer risks specific to bca survivors is scant. Although systematic reviews are considered to be the "gold standard" in knowledge synthesis, our findings suggest that much remains to be done in the area of synthesis research to better guide practice in cancer survivorship.

The present study identified and compared the coping strategies of Chinese American, Korean American, and Mexican American breast cancer survivors (BCS). Six focus groups were conducted with Chinese American (n = 21), Korean American (n = 11), and Mexican American (n = 9) BCS. Interviews were audio-recorded, transcribed, and translated for thematic content analysis of coping experiences and strategies. Women reported the use of 8 coping strategies (religious/spiritual, benefit finding, fatalism, optimism, fighting spirit, information seeking, denial, and self-distraction). Among Chinese American BCS, benefit finding was the most referenced coping strategy, whereas religious/spiritual coping was most frequently reported among Korean American and Mexican American BCS. Denial and self-distraction were the least cited strategies. Survivors draw upon new found inner strength to successfully integrate their cancer experience into their lives. Coping models must consider the diversity of cancer survivors and the variability in coping strategies among cultural ethnic minority BCS.

65 Background: Survivorship care plans (SCPs) include treatment summaries and follow-up care recommendations intended to improve patient care and well-being after cancer treatment. Limited research has yielded mixed results regarding SCPs' impact on patient and system outcomes, but emphasized provider burden as an implementation barrier. We created a patient-centered SCP template and implemented its delivery at a safety net hospital that serves primarily racial/ethnic minority patients. Methods: In a single-arm feasibility study, oncologists and advanced practice nurses used the template to deliver SCPs to post-treatment breast cancer survivors (BCS) in consultation visits. We assessed changes in patient-reported outcomes from baseline (pre-SCP) to a 3-month follow-up, as well as provider time burden. Results: Female BCS participants (n = 75; mean age = 58.5 years) were primarily African-American (73%) and had high school/GED education or less (61%). Average time since diagnosis was 3.7 years (SD = 3.8); all received surgery; most received radiation (84%), hormone (77%), and/or chemotherapy treatment (73%). At follow-up, a majority rated their SCPs as good to excellent (92%), easy or very easy to understand (84%), a good to excellent summary of their treatment (92%) and as motivation for healthy lifestyles (88%). BCS follow-up scores improved significantly from baseline on breast cancer knowledge (p = .02), self-efficacy (p = .03), the QLQ-INFO25 (p < .01), and the FACIT TS-PS satisfaction with health care staff communication subscale (p < .01). No significant differences between baseline and follow-up scores (p < .05) were found for overall treatment satisfaction, health behaviors, and health-related quality of life. Preparing and delivering SCPs took providers considerable time (M = 54 & 22 minutes, respectively). Conclusions: This pilot study is limited by a single-arm design, but results suggest that SCPs may be related to improved survivor knowledge, information, self-efficacy and communication with health care staff. The individualized, comprehensive SCPs were well received by BCS in a safety net hospital but delivery was time-intensive. These findings will inform future research trials and clinical care initiatives.

The need for focus on outcomes and the role of informatics.

Introduction: Survivorship care plans (SCPs) have been suggested as a solution to the fragmentation of care and suboptimal outcomes experienced by the more than 13 million cancer survivors in the US. Provider and patient acceptance of SCPs is generally high, but trials to date have examined outcomes such as cancer-related distress rather than constructs more directly related to the purpose of SCPs, such as improving coordination of care, knowledge about survivorship issues, and perceived usefulness by patients. Moreover, little is known about processes by which SCPs are developed and delivered in practice – who is involved and the level of resources needed for implementation. This pilot study used a quasi-experimental, pre-test/post-test design to examine the process of delivering standardized SCPs and the outcomes achieved by post-treatment breast cancer survivors at seven cancer centers affiliated with the LIVESTRONG™ Survivorship Centers of Excellence Network. Method: Outcomes were assessed prior to SCP delivery and 3 months following and included survivors’ use of and satisfaction with SCPs, perceived knowledge about survivorship care and potential late effects, and survivors’ assessment of the quality and coordination of survivorship care. Process variables included type of provider delivering the SCP and time required to complete and deliver the SCP. Results: 139 breast cancer survivors completed baseline and follow-up measures and received a comprehensive, standardized SCP at a survivorship visit (Age M = 53.9 years, 3.4 years post-diagnosis, 90.6% Caucasian). Satisfaction with the SCP was high, with 90% of participants being at least ‘satisfied’ and 56% being ‘very’ or ‘extremely satisfied’. Perceived knowledge about survivorship care improved following SCP delivery (p < 0.001), as did survivor perception of quality of survivorship care received and coordination among providers (all p < 0.001). A trend toward improvement in satisfaction with the follow-up care provider was also noted (p = 0.11). Most participants (88%) reported reading their SCP carefully following delivery. In the 3 months following delivery, participants reported they most commonly used SCP materials to make decisions about appropriate exercise (69%), which tests to receive and when (65%), and to make dietary changes (65%), but only 23% shared the SCP with their primary care providers during that time frame. With respect to process, providers were predominately NPs and Pas (80%). Although implementation varied, time burden was consistently high (M = 72 minutes to prepare, M = 48 minutes to deliver). Discussion: This is the first known study to demonstrate significant improvements in perceived knowledge regarding and perceived quality of survivorship care following receipt of a comprehensive SCP. Survivors were satisfied with their SCP, and most frequently reported using SCPs in making decisions regarding behavioral changes. Results warrant further consideration in a randomized controlled trial, and approaches that maximize efficiency are needed given the time burden of providers to provide an SCP. SCPs have been recommended for all cancer survivors and these data provide preliminary support for this recommendation. Citation Information: Cancer Res 2013;73(24 Suppl): Abstract nr P3-08-02.

BackgroundAlthough cancer survivorship care plans have been in use for several years, they have been shown to not be effective in meeting the long-term needs of cancer survivors, in addition being generic and passive in nature. Interactive survivorship care plans in the form of a personal decision support aid could provide an opportunity to not only engage survivors in their health care, but also capture meaningful treatment-related outcomes to use as a rich data source as the basis for making informed decisions. The objective of this research is to formulate an evidence-based model framework for implementing breast cancer survivorship guidelines via an online breast cancer survivorship care plan (SCP).MethodsThe study was completed in three steps. In the first step, or the requirements gathering phase, we conducted personal interviews of breast cancer survivors to determine their use of the survivorship care plan (SCP) and related needs to determine core SCP functions and formulate an implementation framework for an online SCP. In the second step, we used the framework as a guide to design and develop the online SCP tool. Finally, in the third step, we conducted preliminary testing to determine the feasibility of the developed tool among online users.ResultsFifteen breast cancer survivors were consulted, who reported several issues from their use of the traditional paper-based SCP. Four themes were identified that represent the SCP’s core desired functions. Eight features were matched to implement these core functions. Using a personal decision approach, an online SCP tool called ACESO that incorporates these features and functions was developed. Preliminary feasibility testing yielded overall positive responses from breast cancer survivors (n = 51).ConclusionOur study demonstrated that survivors face challenges from their use of a traditional paper-based SCP. The online SCP we developed is technically feasible and has the potential to effectively engage breast cancer survivors in self-management and shared decision-making with their clinicians and caregivers. Further testing is required to assess its usability and long-term impact.

50 Background: The American College of Surgeons Commission on Cancer Standard 3.3 mandates that by 2018, oncologists provide Survivorship Care Plans (SCPs) to more than 75% of Stage 1-3 breast cancer survivors. Preparation and delivery of SCPs is time-consuming and requires dedicated staff commitment. Working with PatientsWithPower(PWP), a digital health company supporting patient decision-making for breast cancer, we developed a web-based SCP and surveyed patients regarding their satisfaction with the SCP. The objective of this study was to assess patient satisfaction with the PWP SCP. Methods: SCP’s were prepared using data extracted from the electronic medical record (EMR) and PWP software. A one-page SCP was presented to each patient by the Nurse Practitioner (NP) during a routine visit after patients completed active treatment. Results were reviewed after all surveys were completed. Fifty women with Stage 0-3 breast cancer participated in the IRB approved study and reported their satisfaction with the PWP SCP via online survey. Results: Using patient data in the EMR, the PWP plan took about 45 minutes to prepare. Once completed, NPs spent 10-15 minutes with each patient reviewing the SCP. Patient surveys indicated that 98% of patients felt it was important to receive a SCP, 84% planned to use it to plan follow up management, and 75% intended to share the SCP with their primary care physician. According to patients, the most valuable parts of the SCP were diagnosis and treatment history, and the follow up schedule. More than 70% of women requested additional information about future screening for recurrence, nutrition, and long-term side effect management. 92% of women appreciated the electronic “living document” that can be easily updated at subsequent visits. Conclusions: Presenting SCPs to patients is an essential component of high-quality cancer care. PWP’s online platform facilitates the development and delivery of SCPs by organizing and storing on-going patient data to make future SCP updates easy and efficient. Our patient satisfaction survey results underscore the value of SCPs, particularly for follow-up management and communications with primary care doctors.

To examine symptom and quality-of-life (QOL) trajectories in breast cancer and lymphoma survivors enrolled in a survivorship navigation intervention and to explore patient, caregiver, and primary care provider (PCP) satisfaction with receipt of a survivorship care plan (SCP). . Prospective, cohort, longitudinal. . The Billings Clinic, an integrated cancer center in Montana. . 67 patients with breast cancer or lymphoma who recently completed cancer treatment, along with 39 of their caregivers and 23 PCPs. . Data collection at one, three, and six months by the Functional Assessment of Cancer Therapy-General and satisfaction surveys. . Symptoms, QOL, and satisfaction with the survivorship navigator and the SCP. . Symptoms persisted six months following treatment. Symptoms and QOL indicators with worst intensity were energy, sleep, coping, and satisfaction with sex life. Patients with more comorbidities reported worse QOL, telephoned the survivorship navigator more often, and were more satisfied with the SCP. Patients with lymphoma reported higher QOL, but it was not significantly different from patients with breast cancer. Patients were significantly more satisfied than caregivers with the SCP at time 1. PCPs were highly satisfied with the SCP. . Some symptoms persist, even when cancer treatment has ended. Patients with comorbidities are at higher risk for more severe symptoms and worse QOL and may benefit from ongoing support. SCPs can facilitate patients' transition to primary care following cancer treatment. . Healthcare professionals who care for breast cancer survivors need to routinely assess them for the presence of comorbid conditions. Obese breast cancer survivors may benefit from weight reduction interventions to possibly decrease their risk of developing lymphedema and improve their overall health status.