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There are persistent disparities in the delivery of cancer treatment, with Black patients receiving fewer of the recommended cancer treatment cycles than their White counterparts on average. To enhance racial equity in cancer care, innovative methods that apply antiracist principles to health promotion interventions are needed. The parent study for the current analysis, the Accountability for Cancer Care through Undoing Racism and Equity (ACCURE) intervention, was a system-change intervention that successfully eliminated the Black–White disparity in cancer treatment completion among patients with early-stage breast and lung cancer. The intervention included specially trained nurse navigators who leveraged real-time data to follow-up with patients during their treatment journeys. Community and academic research partners conducted thematic analysis on all clinical notes (n = 3,251) written by ACCURE navigators after each contact with patients in the specialized navigation arm (n = 162). Analysis was informed by transparency and accountability, principles adapted from the antiracist resource Undoing Racism and determined as barriers to treatment completion through prior research that informed ACCURE. We identified six themes in the navigator notes that demonstrated enhanced accountability of the care system to patient needs. Underlying these themes was a process of enhanced data transparency that allowed navigators to provide tailored patient support. Themes include (1) patient-centered advocacy, (2) addressing system barriers to care, (3) connection to resources, (4) re-engaging patients after lapsed treatment, (5) addressing symptoms and side effects, and (6) emotional support. Future interventions should incorporate transparency and accountability mechanisms and examine the impact on racial equity in cancer care.

The long-term reproductive health impact of cancer treatments is a concern for premenopausal women with a history of breast cancer. This study examined the unmet sexual and reproductive health needs of breast cancer survivors, as well as concordances and discordances in needs by childbearing status and race. We interviewed 17 women diagnosed with breast cancer between the ages of 18 and 45 years and living in North Carolina. To analyze these data, we used the Sort and Sift, Think and Shift© method, a multidimensional qualitative analysis approach. We learned that breast cancer survivors (a) received limited reproductive health information, (b) desired realistic expectations of conceiving postcancer, (c) struggled with adjusting to their altered physical appearance, and (d) had menopause symptoms that led to sexual health and quality of life issues. Breast cancer survivors are in need of and desire more education and resources to address their sexual and reproductive health concerns.

This retrospective, secondary qualitative analysis investigates whether health system factors influence social support among Black and white breast and lung cancer survivors and racial differences in support. These data come from race- and cancer-stratified focus groups (n = 6) and interviews (n = 2) to inform a randomized controlled trial utilizing antiracism and community-based participatory research approaches. Findings indicate social support was helpful for overcoming treatment-related challenges, including symptom management and patient-provider communication; racial differences in support needs and provision were noted. Resources within individual support networks reflect broader sociostructural factors. Reliance on family/friends to fill gaps in cancer care may exacerbate racial disparities.

PURPOSE: Annually, >45,000 U.S. women are diagnosed with cancer during adolescence and young adulthood (AYA). Since 2006, national guidelines have recommended fertility counseling for cancer patients. We examined childbirth after AYA cancer by calendar period, cancer diagnosis, and maternal characteristics. METHODS: We identified a cohort of women with an incident invasive AYA cancer diagnosis at ages 15–39 during 2000–2013 in North Carolina. Cancer records were linked with statewide birth certificates through 2014. Hazard ratios (HR) and 95% confidence intervals (CI) for first post-diagnosis live birth were calculated using Cox proportional hazards regression. RESULTS: Among 17,564 AYA cancer survivors, 1,989 had ≥ 1 birth after diagnosis during 98,397 person-years. The 5- and 10-year cumulative incidence of live birth after cancer was 10% and 15%, respectively. AYA survivors with a post-diagnosis birth were younger at diagnosis, had lower stage disease, and had less often received chemotherapy than those without a birth. The 5-year cumulative incidence of post-diagnosis birth was 10.0% for women diagnosed during 2007–2012, compared to 9.4% during 2000–2005 (HR=1.01; 0.91, 1.12), corresponding to periods before and after publication of American Society of Clinical Oncology fertility counseling guidelines in 2006. CONCLUSIONS: Despite advances in fertility preservation options and recognition of fertility counseling as a part of high quality cancer care, the incidence of post-diagnosis childbirth has remained stable over the last 15 years. IMPLICATIONS FOR CANCER SURVIVORS: Our study uses statewide data to provide recent, population-based estimates of how often AYA women have biological children after a cancer diagnosis.

The concept of intersectionality has been used to analyze and understand how multiple forms of identity and oppression interact to shape life experiences of marginalized groups. We conducted a qualitative study to explore how Black Brazilian women experience the intersections of race, class, and gender and the ways in which these intersecting experiences act as social determinants of health. Nine focus groups were conducted with Black, White, and mixed-race women of childbearing age (n = 37), social and health activists (n = 11), and health professionals (n = 20). The focus groups took place in two cities in the Brazilian state of Bahia during October and November 2012. Using a comparative approach, we describe participants' responses regarding the life experiences of women of differing racial and class backgrounds. Our findings highlight how the intersectional relationship between race, class, and gender alters women's social context and life course opportunities, as well as their stressors and protective buffers. We argue that the differing intersectional experiences of women due to race and class create unique social contexts that define the parameters of health and wellness. In addition, we argue that the experiences at each intersection (i.e., raceXclass, raceXgender, classXgender, raceXclassXgender) have a unique character that can be qualitatively described. Improved specification of exposures experienced by marginalized populations who experience intersecting forms of oppression can help explain intra- and inter-group differences in health outcomes, and may also lead to improved intervention models.

PURPOSE: Racial disparities in cancer treatment-related symptom burden are well-documented and linked to worse treatment outcomes. Yet, little is known about racial differences in patients’ treatment-related symptom management experiences. Such understanding can help identify modifiable drivers of symptom burden inequities. As part of the Cancer Health Accountability for Managing Pain and Symptoms (CHAMPS) study, we examined racial differences in symptom management experiences among Black and White breast cancer survivors (BCS). METHODS: We conducted six focus groups (n=3 Black BCS groups; n=3 White BCS groups) with 22 stage I-IV BCS at two cancer centers. Focus groups were audio-recorded and transcribed verbatim. Based on key community-based participatory research principles, our community/academic/medical partner team facilitated focus groups and conducted qualitative analyses. RESULTS: All BCS described positive symptom management experiences, including clinician attentiveness to symptom concerns and clinician recommendations for pre-emptively managing symptoms. Black BCS commonly reported having to advocate for themselves to get information about treatment-related symptoms, and indicated dissatisfaction regarding clinicians’ failure to disclose potential treatment-related symptoms or provide medications to address symptoms. White BCS often described dissatisfaction regarding inadequate information on symptom origins and clinicians' failure to offer reassurance. CONCLUSIONS: This study elucidates opportunities for future research aimed at improving equity for cancer treatment-related symptom management. For Black women, warnings about anticipated symptoms and treatment for ongoing symptoms were particular areas of concern. Routine symptom assessment for all women, as well as clinicians’ management of symptoms for racially-diverse cancer patients, need to be more thoroughly studied and addressed.

African-American (AA) female cancer survivors share a disproportionate burden of diabetes compared to their white counterparts. Our objectives were to explore the perspectives of AA survivors with type 2 diabetes on perceived barriers to physical activity (PA) and preferences for a PA intervention and develop a framework for a PA program after cancer treatment. Trained interviewers conducted semi-structured interviews with AA survivors of breast or endometrial cancer with diabetes (total n = 20; 16 breast, 4 endometrial). Thirteen open-ended questions were posed to stimulate discussions, which were audio recorded and transcribed verbatim. Two investigators independently reviewed transcriptions and extracted coded quotations to identify major themes. Median age of participants was 63 years. Nine themes were identified that focused on post-treatment physical symptoms (e.g., lymphedema, bone/joint pain, depression symptoms and self-motivation as barriers to PA, exercise routines tailored to physical limitations and peer partners and program leaders who understand their emotional health needs). The S.U.C.C.E.S.S. framework summarizes the survivors’ preferences for an effective lifestyle intervention: Support efforts to maintain PA, Understand physical and depression symptoms, Collaborate with multi-disciplinary provider, Coordinate in-person intervention activities, Encourage partnerships among survivors for comorbidity risk reduction, develop Sustainable coping strategies for side effects of treatment, and Share local community resources. Survivors verbalized the need for a multi-disciplinary team to assist with their psychosocial needs and physical limitations to achieve their PA goals, as integrated into the S.U.C.C.E.S.S. framework. The S.U.C.C.E.S.S. framework reflects the perspectives of survivors with type 2 diabetes and may help to inform post-treatment programs.

Recent literature on racial or ethnic discrimination and mental health was reviewed to assess the current science and identify key areas of emphasis for social epidemiology. Objectives of this review were to (1) determine whether there have been advancements in the measurement and analysis of perceived discrimination, (2) identify the use of theories and/or frameworks in perceived discrimination and mental health research, and (3) assess the extent to which stress buffers are being considered and evaluated in the existing literature. Metrics and analytic approaches used to assess discrimination remain largely unchanged. Theory and/or frameworks such as the stress and coping framework continue to be underused in majority of the studies. Adolescents and young adults experiencing racial/ethnic discrimination were at greater risk of adverse mental health outcomes, and the accumulation of stressors over the life course may have an aggregate impact on mental health. Some growth seems evident in studies examining the mediation and moderation of stress buffers and other key factors with the findings suggesting a reduction in the effects of discrimination on mental health. Discrimination scales should consider the multiple social identities of a person, the context where the exposure occurs, how the stressor manifests specifically in adolescents, the historical traumas, and cumulative exposure. Life course theory and intersectionality may help guide future work. Despite existing research, gaps remain in elucidating the effects of racial and ethnic discrimination on mental health, signaling an opportunity and a call to social epidemiologists to engage in interdisciplinary research to speed research progress.

Background: Black cancer patients consistently report worse pain management than White patients. Effective pain management requires communication, and provider respect is linked to positive provider-patient communication. Racial differences in patient perceptions of respect during clinical encounters are well documented and linked to disparities in care, yet little is known about whether racial differences in perceived respect contribute to disparities in cancer pain. As part of the NCI-funded study, Accountability for Cancer Care through Undoing Racism and Equity, we examined whether perceived respect was associated with racial disparities in pain. Methods: We obtained prospective survey data from Black and White breast and lung cancer patients in active treatment at two cancer centers from 2013-2017. The primary outcome was a binary measure of moderate-to-severe pain based on patient responses to PROMIS items 90 days post-diagnosis. A binary measure of “high” vs “low” respect was computed based on patient responses to a survey item assessing perceived respect from doctors at the last clinic visit. We estimated logistic regressions assessing associations between race and pain 90 days post-diagnosis and the mediating effect of respect, adjusting for patient demographics, baseline pain, clinical characteristics, and site of care. Results: Compared with Whites (N = 200), Blacks (N = 119) were more likely to report moderate-to-severe pain (26.9% vs. 49.1%; p Conclusions: Black-White racial disparities in pain exist among cancer patients. While patient perceptions of respect were linked to pain severity and to some extent, race, perceived respect did not explain racial disparities in pain severity. Citation Format: Cleo A. Samuel, Jennifer Schaal, Olive Mbah, Eugenia Eng, Linda Robertson, Stephanie Baker, Kristin Z. Black, Crystal Dixon, Katrina Ellis, Fatima Guerrab, Lauren C. Jordan, Alexandra F. Lightfoot, Samuel Cykert. Examining the role of perceived respect on racial disparities in cancer-related pain [abstract]. In: Proceedings of the Eleventh AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2018 Nov 2-5; New Orleans, LA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl):Abstract nr B025.

Background: Treatment-related side effects (e.g., pain, fatigue, nausea/vomiting) are commonly reported among cancer patients and impact patients' health-related quality of life (HRQOL) and treatment adherence. While there is extensive literature documenting disparities in cancer treatment and outcomes, less is known about racial and educational differences in symptom burden and access to supportive care services during treatment. As part of a National Cancer Institute-funded research study, Cancer Health Accountability for Managing Pain and Symptoms (CHAMPS), we examined racial and educational variations in symptom reports and supportive care referrals among breast cancer patients undergoing chemotherapy at two cancer centers. Methods: We surveyed 61 Black and White stages I-III breast cancer patients undergoing chemotherapy at one academic and one community-based cancer center during 2016-2018. Survey items assessed patient sociodemographics, HRQOL and symptoms, supportive care, and care satisfaction. Using a community-based participatory research approach, our community/academic/medical partnership administered patient surveys and evaluated symptom burden and supportive care referrals stratified by race (Black vs. White) and education (less than a college degree vs. college degree or higher). Results: Overall, the most commonly reported HRQOL/symptom concerns included employment interference (44.3%), social life interference (39.3%), financial difficulties (34.4%), worry (29.5%), skin toxicities (26.2%), and pain (26.2%). Compared with White patients, Black patients were more likely to report moderate-to-severe anxiety (41.2% vs. 20.5%, p=.05) and vomiting (17.6% vs. 2.3%, p=.03). Patients with less than a college degree were more likely to report moderate-to-severe constipation than patients with a college degree or higher (20.0% vs. 0.0%, p=.028). In terms of supportive care services, patients were most often referred to cancer support groups (83.9%), nutrition/dietary consultations (54.1%), and financial counseling (54.1%). Black patients were less likely to be referred to supportive services for cancer-specific communication with their families than their White counterparts (16.7% vs. 38.6%, p=.04). No statistically significant educational differences in supportive care referrals were observed. Conclusions: Breast cancer patients experience a range of HRQOL/symptom concerns and supportive care needs during treatment; however, racial and educational differences exist in these cancer care outcomes. Given longstanding disparities in cancer care outcomes, and the survival and HRQOL benefits of supportive care services, future research should examine barriers to equitable supportive care and opportunities for improvement Citation Format: Cleo A. Samuel, Jennifer Schaal, Olive M. Mbah, Wendi Elkins, Eugenia Eng, Linda Robertson, Stephanie Baker, Kristin Z. Black, Crystal Dixon, Katrina Ellis, Fatima Guerrab, Lauren Jordan, Alexandra F. Lightfoot, Neda R. Padilla, Christina Younge, Samuel Cykert. Racial and educational differences in symptom burden and supportive care among breast cancer patients undergoing chemotherapy [abstract]. In: Proceedings of the Eleventh AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2018 Nov 2-5; New Orleans, LA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl):Abstract nr B026.

Health-related quality of life (HRQOL) and pain are important supportive cancer care outcomes. The patient-provider relationship, a modifiable care experience, has been linked to healthcare outcomes; however, less is known about associations between patient-provider relationship and supportive care outcomes in cancer patients. We examined the role of multiple aspects of the patient-provider relationship in explaining patterns of HRQOL and pain among breast and lung cancer patients. Our analysis included 283 breast and lung cancer patients from two cancer centers. Clinical data and survey data on patient sociodemographic factors, physical and mental HRQOL, pain, and patient-physician relationship (i.e., doctor’s respectfulness, time spent with doctors, patient involvement in decision-making, satisfaction with care, and following doctor’s advice/treatment plan) were collected at baseline and during treatment. We estimated adjusted modified Poisson regression models to assess associations between patient-physician relationship factors and physical and mental HRQOL and pain. Compared with patients reporting suboptimal respect from doctors, patients reporting optimal respect were less likely to report below average physical HRQOL (adjusted risk ratio (ARR), 0.73; 95%CI, 0.62–0.86), below average mental HRQOL (ARR, 0.71; 95%CI, 0.54–0.93), and moderate-to-severe pain (ARR, 0.53; 95%CI, 0.35–0.79). Patients reporting optimal involvement in care decision-making and patients who reported following their doctor’s advice/treatment plan were less likely to report below average mental HRQOL than their respective counterparts (ARR, 0.64; 95%CI, 0.50–0.83; ARR, 0.65; 95%CI, 0.48–0.86). Multiple patient-physician relationship factors account for variations in HRQOL and pain in cancer patients. These findings provide insight into potential targets for improving the patient-provider relationship and supportive cancer care outcomes.

OBJECTIVE: Evidence suggests peer support (PS) is as an effective strategy for enhancing prevention and control of chronic and infectious diseases, including cancer. This systematic scoping review examines the range and variety of interventions on the use of PS across the cancer care continuum. METHOD: We used a broad definition of PS to capture a wide-range of interventions and characterize the current status of the field. Literature searches were conducted using PubMed, SCOPUS, and CINAHL to identify relevant articles published from January 2011 – June 2016. We screened the title and abstracts of 2087 articles, followed by full-text screening of 420 articles, resulting in a final sample of 242 articles of which the most recent 100 articles were reviewed (published June 2014 – May 2016). RESULTS: A number of the recent intervention studies focused on breast cancer (32%, breast cancer only) or multiple cancer sites (23%). Although the interventions spanned all phases of the cancer care continuum, only 2% targeted end-of-life care. Seventy-six percent focused on clinical outcomes (e.g., screening, treatment adherence) and 72% on reducing health disparities. Interventions were primarily phone-based (44%) or delivered in a clinic setting (44%). Only a few studies (22%) described the impact of providing PS on peer supporters. CONCLUSION: PS appears to be a widely used approach to address needs across the cancer care continuum, with many opportunities to expand its reach.

Background : Accountability for Cancer Care through Undoing Racism™ and Equity (ACCURE) is a systems-change intervention addressing disparities in treatment initiation and completion and outcomes for early stage Black and White breast and lung cancer patients. Using a community-based participatory research (CBPR) approach, ACCURE is guided by a diverse partnership involving academic researchers, a nonprofit community-based organization, its affiliated broader based community coalition, and providers and staff from two cancer centers. Objectives : This paper describes the collaborative process our partnership used to conduct focus groups and to code and analyze the data to inform two components of the ACCURE intervention: 1) a “power analysis” of the cancer care system and 2) the development of the intervention’s training component, Healthcare Equity Education and Training (HEET), for cancer center providers and staff. Methods : Using active involvement of community and academic partners at every stage in the process, we engaged Black and White breast and lung cancer survivors at two partner cancer centers in eight focus group discussions organized by race and cancer type. Participants were asked to describe “pressure point encounters” or critical incidents during their journey through the cancer system that facilitated or hindered their willingness to continue treatment. Community and academic members collaborated to plan and develop materials, conduct focus groups, and code and analyze data. Conclusions : A collaborative qualitative data analysis process strengthened the capacity of our community–medical–academic partnership, enriched our research moving forward, and enhanced the transparency and accountability of our research approach.

BACKGROUND: Due to the advancement of screening and treatment options for cancer, more people are able to live fruitful lives after a cancer diagnosis, yet for pre-menopausal breast cancer survivors the effects of disease and treatment on birth outcomes is not well documented. POPULATION: Linked North Carolina birth record-cancer registry data were used to examine the birth outcomes of pre-menopausal breast cancer survivors. Out of the 2,213,464 eligible live births that occurred between 1990 and 2009 in North Carolina, 539 of the mothers are breast cancer survivors and 10.6% (n=235,262) of the mothers experienced a preterm birth (which is below the national average of 12%). A vast majority of the women have a high school diploma or are college educated (81.4%; n=1,796,594), 14.0% (n=309,208) of the women reported that they smoked during pregnancy, and about two-thirds of the women were not married at the time of the birth of their child (67.7%; n=1,499,053). A majority of the study population is non-Hispanic White (62.6%; n=1,385,393) followed by non-Hispanic Blacks (24.0%; n=531,584), Hispanics/Latinos (9.7%; 215,224), and non-Hispanics of other races (3.7%; n=81,250). METHODS: The aim of this study was to determine if breast cancer survivors of reproductive age (ages 18-49) who had a live birth after their diagnosis have a greater prevalence of preterm birth than women who were not diagnosed with breast cancer. Binomial regression was used to estimate the exposure-outcome association in this case-cohort study. FINDINGS: The crude prevalence of preterm birth for pre-menopausal breast cancer survivors is 2.01 (95% CI: 1.71-2.36) times the crude prevalence of preterm birth for women who were not diagnosed with breast cancer. When the data were stratified by race/ethnicity, the prevalence of preterm birth for pre-menopausal breast cancer survivors compared to women not diagnosed with breast cancer within each racial/ethnic group is 2.27 (1.85-2.79) for Whites, 1.45 (1.10-1.91) for Blacks, 2.23 (0.64-7.81) for Hispanics/Latinos, and 1.83 (0.52-6.50) for other races. Controlling for the mother’s education level, marital status, and smoking status during pregnancy, the prevalence of preterm birth for pre-menopausal breast cancer survivors compared to women not diagnosed with breast cancer within each racial/ethnic group is 2.37 (1.93-2.91) for Whites, 1.50 (1.14-1.98) for Blacks, 2.28 (0.65-7.97) for Hispanics/Latinos, and 1.79 (0.51-6.31) for other races. CONCLUSION: Women diagnosed with breast cancer during their reproductive years are potentially at greater risk of experiencing a preterm birth and may benefit from targeted preconception health interventions. Citation Format: Kristin Z Black, Diane L Rowley. The birth outcomes of pre-menopausal breast cancer survivors: Do they have a greater prevalence of delivering a preterm infant? [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P6-10-07.

Community-based participatory research (CBPR) strives for equitable collaboration among community and academic partners throughout the research process. To build the capacity of academia to function as effective research partners with communities, the North Carolina Translational and Clinical Sciences Institute (NC TraCS), home of the University of North Carolina at Chapel Hill (UNC-CH)'s Clinical and Translational Sciences Award (CTSA), developed a community engagement consulting model. This new model harnesses the expertise of community partners with CBPR experience and compensates them equitably to provide technical assistance to community-academic research partnerships.This paper describes approaches to valuing community expertise, the importance of equitable compensation for community partners, the impact on the community partners, opportunities for institutional change, and the constraints faced in model implementation.Community Experts (CEs) are independent contractor consultants. CEs were interviewed to evaluate their satisfaction with their engagement and compensation for their work.(1) CEs have knowledge, power, and credibility to push for systems change. (2) Changes were needed within the university to facilitate successful consultation to community-academic partnerships. (3) Sustaining the CE role requires staff support, continued compensation, increased opportunities for engagement, and careful consideration of position demands. (4) The role provides benefits beyond financial compensation. (5) Opportunities to gather deepened relationships within the partnership and built collective knowledge that strengthened the project.Leveraging CE expertise and compensating them for their role benefits both university and community. Creating a place for community expertise within academia is an important step toward equitably including the community in research.

Each year, >45,000 U.S. women are diagnosed with cancer during adolescence and young adulthood (AYA), defined by the National Cancer Institute as ages 15–39 years. ASCO first published guidelines on fertility counseling and preservation for cancer patients in 2006. Few studies have assessed birth rates after cancer among AYAs. We identified women with an incident cancer diagnosis at ages 15–39 during 2000–2013 in the North Carolina Cancer Registry. Cancer records were linked with statewide birth certificates through 2014 using a probabilistic algorithm. Hazard ratios (HR) and 95% confidence intervals (CI) for childbirth were calculated using Cox proportional hazards regression, with person-time accrued from cancer diagnosis until death, 46th birthday or December 31, 2014 and adjusted for age at diagnosis. Among 19,507 AYA cancer survivors, 2,343 had ≥1 post-diagnosis birth during 110,216 person-years. The 5- and 10-year cumulative incidence of post-diagnosis birth was 12% and 18%, respectively. The most common cancers were breast (25%), thyroid (14%), gynecologic (10%), melanoma (10%), and lymphoma (7%). The percent with a birth after diagnosis was lowest for breast and gynecologic cancer (6% for both) and highest for Hodgkin lymphoma (23%) and melanoma (24%). Survivors with a birth after diagnosis were more often younger, had not received radiation or chemotherapy, and had lower stage disease. African American women were less likely to have a post-diagnosis birth than white women overall (HR = 0.82; 0.73, 0.92), due in part to a higher proportion of breast cancers (35% vs. 23%). About 30% of births were 5 years after (mean = 3.5 years). Half (48%) were to women who were nulliparous at diagnosis. The 5-year cumulative incidence of post-diagnosis birth was 11.7% for women diagnosed during 2007–2012 (after ASCO's 2006 guidelines), compared to 11.6% during 2000–2005 (HR = 0.98; 0.89, 1.08) and varied little by cancer type. Despite advances in fertility preservation options and recognition of fertility counseling as a part of high quality cancer care, birth rates have remained stable over the last 15 years. Low implementation of fertility counseling and limited access to fertility preservation may be contributing factors.

Background: Racial disparities in quality and completion of cancer treatment have been associated with poorer health outcomes among African Americans (AA) compared to White Americans (WA). Support from informal social networks – such as family members and friends - during the cancer care journey is critical. Yet, few studies have examined system-level factors associated with family and friend involvement in cancer care and whether system-level factors contribute to racial variations in their involvement. The purpose of this study is to investigate (a) cancer survivor perceptions on involvement of and effects from their informal social network during their cancer journey, (b) healthcare system factors that influenced the type and degree of network involvement, and (c) racial differences in survivor/network member experiences with the healthcare system during the cancer journey. Methods: Accountability for Cancer Care through Undoing Racism and Equity”, a 5-year system-change intervention trial funded by the National Cancer Institute, is a community-based participatory research (CBPR) partnership of the University of North Carolina at Chapel Hill (UNC), Greensboro Health Disparities Collaborative, and two cancer centers. ACCURE aims to reduce racial inequity in quality and completion of treatment for Stage 1-2 breast and lung cancer patients at the two partner cancer centers. As part of the formative work for this study, focus groups were conducted with Black and White early-stage breast and lung cancer survivors to understand how encounters with the healthcare system influenced their treatment experience (diagnosis through survivorship). Our racially diverse CBPR partnership developed, conducted, and analyzed focus group data from 8 focus groups with early stage breast and lung cancer survivors at the two cancer centers: 4 focus groups with AA survivors (n=12) and 4 focus groups with WA survivors (n=15). Results: Informal network member involvement was associated with barriers to care patients encountered in the cancer system; aspects of cancer care that helped to facilitate patient care and treatment; and, racial differences in critical encounters with the health system. Involvement with and health related experiences of family members and friends also influenced survivor interactions with the health care system, though differences by race were observed. Conclusion: Cancer survivors identified several healthcare system factors that influenced the nature of social network member involvement during cancer care, with some differences by race. Implications for system-changes to improve care for early-stage breast and lung cancer patients and survivors, and considerations of family and friend involvement in care, will be discussed. Citation Format: Katrina R. Ellis, Jennifer Schall, Stephanie Baker, Kristin Zenee Black, Carol Cothern, Kia Davis, Kay Doost, Eugenia Eng, Christina Goettsch, Fatima Guerrab, Christina Hardy, Alexandra Lightfoot, Neda Padilla, Cleo Samuel. A System-Change and Community-Based Participatory Research Approach to Understanding the Role of Informal Social Networks During the Cancer Care Journey. [abstract]. In: Proceedings of the Ninth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2016 Sep 25-28; Fort Lauderdale, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2017;26(2 Suppl):Abstract nr A43.

127 Background: Compared with white breast cancer patients, black patients more often report inadequate symptom control and decrements in health-related quality of life (HRQOL). Racial differences in patient-provider communication (PPC) are well-documented and linked to worse health outcomes for minorities; however, less is known about inequities in symptom and HRQOL discussions among cancer patients and providers. As part of an NCI-funded systems change intervention to improve racial equity in treatment completion among Black and White cancer patients, we assessed racial differences in PPC regarding treatment-related symptoms, HRQOL issues (e.g., physical, psychosocial, financial, and spiritual well-being), and symptom management among breast cancer survivors (BCS). Methods: We conducted 6 focus groups (FGs) and semi-structured interviews with 22 stage 1-3 BCS (3 black FGs; 3 white FGs) from 2 cancer centers. Guided by a community-based participatory research approach, our diverse community-academic-medical team facilitated FGs and conducted qualitative analyses. Results: Although both black and white BCS reported multiple treatment-related symptoms and changes in HRQOL, perspectives on PPC differed. Some black and white BCS described positive aspects of PPC, including providers’ thorough explanations of treatment side effects and responsiveness to symptom concerns. However, white BCS expressed greater satisfaction with PPC, while black BCS more often described concerns regarding providers’ verbal (e.g., nondisclosure, dismissiveness) and non-verbal communication (e.g., unapproachability, poor eye contact) skills in the context of symptom management. Most BCS, regardless of race, indicated that providers typically discussed physical symptoms/HRQOL issues, but often failed to mention non-physical side effects of treatment (e.g., social isolation, financial toxicity). Conclusions: Racial differences in PPC exist among BCS and may contribute to inequities in symptom management and HRQOL. Inadequate communication regarding non-physical symptoms likely represents a critical missed opportunity for improving the quality and equity of palliative care.

Background Community-based participatory research (CBPR) is a collaborative and equitable approach to research inquiry; however, the process of establishing and maintaining CBPR partnerships can be challenging. There is an ongoing need for innovative strategies that foster partnership development and long-term sustainability. In 2010, the University of North Carolina at Chapel Hill developed a CBPR charrette model to facilitate stakeholder engagement in translational research. Objective To describe how the Cancer Health Accountability for Managing Pain and Symptoms (CHAMPS) Study leveraged the CBPR charrette process to develop and strengthen its CBPR partnership and successfully implement research objectives. Methods Fourteen CHAMPS community, academic, and medical partners participated in the CBPR charrette. Two co-facilitators guided the charrette application process and in-person discussion of partnership strengths, needs, and challenges. Community experts (CEs) and academic experts (AEs) with extensive experience in CBPR and health disparities provided technical assistance and recommendations during the in-person charrette. Conclusions Overall, the CHAMPS partnership benefited significantly from the charrette process. Specifically, the charrette process engendered greater transparency, accountability, and trust among CHAMPS partners by encouraging collective negotiation of project goals and implementation, roles and responsibilities, and compensation and communication structures. The process also allowed for the exploration of newly identified challenges and potential solutions with support from CEs and AEs. Furthermore, the charrette also functioned as a catalyst for capacity building among CHAMPS community, academic, and medical partners. Future studies should compare the impact of the CBPR charrette, relative to other approaches, on partnership development and process evaluation outcomes.