Examining ACCURE's Nurse Navigation Through an Antiracist Lens: Transparency and Accountability in Cancer Care.

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.

Structural competency in pre-health and health professional learning: A scoping review.

Structural competency training provides guidance to healthcare providers on recognizing and addressing structural factors leading to health inequities. To inform the evidence-based progression of structural competency curriculum development, this study was designed to map the current state of the literature on structural competency training with pre-health students, healthcare professional students, and/or healthcare professionals. We performed a scoping review and identified peer-reviewed, primary research articles assessing structural competency training interventions. The category of learners, timing of the structural competency training, types of teaching and learning activities used, instruments used to measure training outcomes, and evaluation criteria were examined. Eleven (n = 11) articles met inclusion criteria, addressing all training levels, and largely focused on medical education. Active learning strategies and researcher-developed instruments to measure training outcomes were most used. Evaluation criteria largely focused on trainees' affective reactions, utility assessments, and direct measure of the trainee learning. We suggest designing interprofessional structural competency education with an emphasis on active learning strategies and standardized training curricula. Evaluation instruments integrated at different points in the health professional learning trajectory are important for evidence-based progression in curriculum development focused on achieving structural competency.

MedFTs' Role in the Recruitment and Retention of a Diverse Physician Population: A Conceptual Model.

Recruitment and retention of a diverse physician population across stages of medical education is essential for the success of the healthcare system. MedFTs have a unique role to play in advocacy and intervention related to the recruitment and retention of these physicians at all stages of their education and career. As MedFTs expand their influence in healthcare systems, they must ground into their fundamental theories, like systems theory and the Four World View, all while advancing in their professional competencies to attune their skills and those whom they are entrusted in training. The conceptual model, MedFTs' Role in the Recruitment and Retention of a Diverse Physician Population, provides a framework for MedFTs to use their influence to enact change related to diversity and equity in the healthcare system. In addition, the model provides avenues for intervention and advocacy on the part of the MedFT related to each of the four worlds and their specific role(s) in the health care.

Expanding the Reach of an Evidence-Based, System-Level, Racial Equity Intervention: Translating ACCURE to the Maternal Healthcare and Education Systems.

The abundance of literature documenting the impact of racism on health disparities requires additional theoretical, statistical, and conceptual contributions to illustrate how anti-racist interventions can be an important strategy to reduce racial inequities and improve population health. Accountability for Cancer Care through Undoing Racism and Equity (ACCURE) was an NIH-funded intervention that utilized an antiracism lens and community-based participatory research (CBPR) approaches to address Black-White disparities in cancer treatment completion. ACCURE emphasized change at the institutional level of healthcare systems through two primary principles of antiracism organizing: transparency and accountability. ACCURE was successful in eliminating the treatment completion disparity and improved completion rates for breast and lung cancer for all participants in the study. The structural nature of the ACCURE intervention creates an opportunity for applications in other health outcomes, as well as within educational institutions that represent social determinants of health. We are focusing on the maternal healthcare and K-12 education systems in particular because of the dire racial inequities faced by pregnant people and school-aged children. In this article, we hypothesize cross-systems translation of a system-level intervention exploring how key characteristics of ACCURE can be implemented in different institutions. Using core elements of ACCURE (i.e., community partners, milestone tracker, navigator, champion, and racial equity training), we present a framework that extends ACCURE's approach to the maternal healthcare and K-12 school systems. This framework provides practical, evidence-based antiracism strategies that can be applied and evaluated in other systems to address widespread structural inequities.

'It's like you don't have a roadmap really': using an antiracism framework to analyze patients' encounters in the cancer system.

Background: Cancer patients can experience healthcare system-related challenges during the course of their treatment. Yet, little is known about how these challenges might affect the quality and completion of cancer treatment for all patients, and particularly for patients of color. Accountability for Cancer Care through Undoing Racism and Equity is a multi-component, community-based participatory research intervention to reduce Black-White cancer care disparities. This formative work aimed to understand patients' cancer center experiences, explore racial differences in experiences, and inform systems-level interventions.Methods: Twenty-seven breast and lung cancer patients at two cancer centers participated in focus groups, grouped by race and cancer type. Participants were asked about what they found empowering and disempowering regarding their cancer care experiences. The community-guided analysis used a racial equity approach to identify racial differences in care experiences.Results: For Black and White patients, fear, uncertainty, and incomplete knowledge were disempowering; trust in providers and a sense of control were empowering. Although participants denied differential treatment due to race, analysis revealed implicit Black-White differences in care.Conclusions: Most of the challenges participants faced were related to lack of transparency, such that improvements in communication, particularly two-way communication could greatly improve patients' interaction with the system. Pathways for accountability can also be built into a system that allows patients to find solutions for their problems with the system itself. Participants' insights suggest the need for patient-centered, systems-level interventions to improve care experiences and reduce disparities.

The Other Side of Through: Young Breast Cancer Survivors' Spectrum of Sexual and Reproductive Health Needs.

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.

Racial Differences in the Influence of Health Care System Factors on Informal Support for Cancer Care Among Black and White Breast and Lung Cancer Survivors.

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.

The role of patient-physician relationship on health-related quality of life and pain in cancer patients.

PURPOSE: 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. METHODS: 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. RESULTS: 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). CONCLUSION: 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.

Peer support opportunities across the cancer care continuum: a systematic scoping review of recent peer-reviewed literature.

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 to 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 to 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.

Childbirth after adolescent and young adult cancer: a population-based study.

PURPOSE: Annually, > 45,000 US 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, 1989 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.

Perceived barriers and preferred components for physical activity interventions in African-American survivors of breast or endometrial cancer with type 2 diabetes: the S.U.C.C.E.S.S. framework.

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. IMPLICATIONS FOR CANCER SURVIVORS: 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.

"We black women have to kill a lion everyday": An intersectional analysis of racism and social determinants of health in Brazil.

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.

Perceived Racial/Ethnic Discrimination and Mental Health: a Review and Future Directions for Social Epidemiology.

PURPOSE OF REVIEW: 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. RECENT FINDINGS: 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. SUMMARY: 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 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.

Birth Outcomes Among Adolescent and Young Adult Cancer Survivors.

IMPORTANCE: Cancer diagnosis and treatment may adversely affect reproductive outcomes among female cancer survivors. OBJECTIVE: To compare the birth outcomes of adolescent and young adult cancer survivors (AYA [diagnosed at ages 15-39 years]) with those of women without a cancer diagnosis. DESIGN, SETTING, AND PARTICIPANTS: The North Carolina Central Cancer Registry (CCR) was used to identify female AYA cancer survivors diagnosed from January 2000 to December 2013; CCR records were linked to statewide birth certificate files from January 2000 to December 2014 to identify postdiagnosis live births to AYA survivors (n = 2598). A comparison cohort of births to women without a recorded cancer diagnosis was randomly selected from birth certificate files (n = 12 990) with frequency matching on maternal age and year of delivery. MAIN OUTCOMES AND MEASURES: Prevalence of preterm birth, low birth weight, small-for-gestational-age births, cesarean delivery, and low Apgar score. RESULTS: Overall, 2598 births to AYA cancer survivors (mean [SD] maternal age, 31 [5] years) were included. Births to AYA cancer survivors had a significantly increased prevalence of preterm birth (prevalence ratio [PR], 1.52; 95% CI, 1.34-1.71), low birth weight (PR, 1.59; 95% CI, 1.38-1.83), and cesarean delivery (PR, 1.08; 95% CI, 1.01-1.14) relative to the comparison cohort of 1299. The higher prevalence of these outcomes was most concentrated among births to women diagnosed during pregnancy. Other factors associated with preterm birth and low birth weight included treatment with chemotherapy and a diagnosis of breast cancer, non-Hodgkin lymphoma, or gynecologic cancers. The prevalence of small-for-gestational-age births and low Apgar score (<7) did not differ significantly between groups. CONCLUSIONS AND RELEVANCE: Live births to AYA cancer survivors may have an increased risk of preterm birth and low birth weight, suggesting that additional surveillance of pregnancies in this population is warranted. Our findings may inform the reproductive counseling of female AYA cancer survivors.

Community-Guided Focus Group Analysis to Examine Cancer Disparities.

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.

Beyond incentives for involvement to compensation for consultants: increasing equity in CBPR approaches.

BACKGROUND: 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. OBJECTIVES: 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. METHODS: Community Experts (CEs) are independent contractor consultants. CEs were interviewed to evaluate their satisfaction with their engagement and compensation for their work. LESSONS LEARNED: (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. CONCLUSIONS: 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.