I'm still me, I'm still a person: war metaphor use and meaning making in women with metastatic breast cancer.

PURPOSE: The war metaphor is one strategy used frequently in breast cancer to inspire individuals in a "fight" against cancer and assist patients in navigating their illness experience. Despite prominent use, the emotional impact of this language has not been examined in the context of meaning making among women with metastatic breast cancer (MBC). METHODS: This study involved a semi-structured interview considering the war metaphor's impact on women's illness experience with MBC. Participants (n = 22) had been diagnosed with MBC for at least 6 months or following 1 disease progression and were undergoing treatment at an NCI-designated cancer center in Western Pennsylvania at the time of interview. Each participant underwent an individual interview exploring the war metaphor's impact on illness experience. Qualitative thematic analysis was performed to assess feelings about the war metaphor and emotional response to the lived experience of cancer. RESULTS: Two themes were identified surrounding metaphor use and participants' experiences with meaning making in cancer. First, women with MBC perceive the diagnosis as an "unfair fight" due to its incurable nature. Second, patients use alternative language of "living life" and communicate resistance to being defined by their cancer diagnosis. CONCLUSION: War metaphors are one collection of terminology people use to understand their diagnosis. However, their use may apply pressure to prioritize positivity in the face of diagnosis and treatment, in a unique clinical context where this may not be adaptive. These findings affirm a need to consider patients' lived experiences to best facilitate psychological adjustment to illness.

Hope and illness expectations: A cross-sectional study in patients with advanced cancer.

BACKGROUND: The fear of taking away hope hinders clinicians' willingness to share serious news with patients with advanced disease. Unrealistic illness expectations, on the other hand, can complicate decision making and end-of-life care outcomes. Exploration of the association between hope and illness expectations can support clinicians in better communication with their patients. AIM: The aim of this study was to explore whether realistic illness expectations are associated with reduced hope in people with advanced cancer. DESIGN: This is a cross-sectional secondary analysis of baseline data from a primary palliative care cluster-randomized trial CONNECT (data collected from July 2016 to October 2020). Hope was measured by Herth Hope Index. Illness expectations were measured by assessing patients' understanding of their treatment goals, life expectancy, and terminal illness acknowledgement. Multivariable regression was performed, adjusting for demographical and clinical confounders. SETTING/PARTICIPANTS: Adult patients with advanced solid cancers recruited across 17 oncology clinics. RESULTS: Data from 672 patients were included in the study, with mean age of 69.3 years (±10.2), 53.6% were female. Proportion of patients indicating realistic expectations varied based on which question was asked from 10% to 46%. Median level of hope was 39 (IQR = 36-43). Multivariate non-inferiority regression did not find any significant differences in hope between patients with more and less realistic illness expectations. CONCLUSIONS: Our results suggest that hope can be sustained while holding both realistic and unrealistic illness expectations. Communication about serious news should focus on clarifying the expectations as well as supporting people's hopes.

Stakeholder perspectives on six identified interpersonal communication components of patient navigation in breast cancer care.

PURPOSE: Although identified as a key competency domain and a needed area of professional development, interpersonal communication in breast cancer care patient navigation is understudied. Moreover, the patient-navigator relationship may be influenced by the interpersonal communication skills and behaviors of the patient navigator. This paper reports on the interpretation step of a concept mapping study, where key stakeholders shared their perspectives on six identified interpersonal communication components of breast cancer care patient navigation. METHODS: This study utilized concept mapping, a community-engaged mixed method approach. After conducting brainstorming, sorting, and concept mapping analysis, a six-cluster concept map of interpersonal communication in breast cancer care patient navigation was identified. Interpretation sessions with each participant group (patients, patient navigators, administrators) allowed both naming and more in-depth exploration of the six clusters. The sessions were led by a facilitator, the PI, and were audio recorded and transcribed. RESULTS: Six 2-h interpretation sessions were conducted with 21 participants, including patients with breast cancer, breast cancer patient navigators (lay or medically trained), and patient navigation administrators from Western Pennsylvania. Through a group consensus process, the six clusters were named. Participants identified that all six identified components were essential to patient navigation, but the ability to build patient-centered trust and relationships and maintain professional communication were the most impactful components of the patient-navigator relationship. CONCLUSION: These findings validate the importance of interpersonal skills and behaviors of patient navigators in breast cancer care. These findings can inform the patient navigation role description, competencies, and the development of curriculum for training and metrics for evaluation.

Effects of socioeconomic status and race on survival and treatment in metastatic breast cancer.

Race and socioeconomic factors affect outcomes in breast cancer. We aimed to assess the effect of race and neighborhood socioeconomic status (SES) on overall survival and treatment patterns in patients with metastatic breast cancer (MBC). This is a retrospective cohort study involving patients (N = 1246) with distant breast cancer metastases diagnosed at UPMC Magee Women's Breast Cancer Clinic from 2000-2017. Overall survival and treatment patterns were compared between races (Blacks and whites) and SES groups (defined using Area Deprivation Index). Low SES, but not tumor characteristics, was associated with Black race (P < 0.001) in the study population. Low SES (Median [Interquartile Range, IQR] survival 2.3[2.2-2.5] years vs high SES 2.7[2.5-3.1] years, P = 0.01) and Black race (Median [IQR] survival 1.8[1.3-2.3] years, vs white 2.5[2.3-2.7] years P = 0.008) separately were associated with worse overall survival in patients with MBC. In the Cox Proportional Hazard model with SES, race, age, subtype, number of metastases, visceral metastasis, and year of diagnosis as covariates, low SES (Hazard ratio 1.19[1.04-1.35], P = 0.01), but not Black race (Hazard ratio 1.19[0.96-1.49], P = 0.12), independently predicted overall survival in MBC. Moreover, patients from low SES neighborhoods and Black race received fewer lines of chemotherapy than high SES and whites. In conclusion, low neighborhood SES is associated with worse outcomes in patients with MBC. Poor outcomes in Black patients with MBC, at least in part is driven by socioeconomic factors. Future studies should delineate the interplay between neighborhood SES, race, and their effects on tumor biology in MBC.

A Scoping Review on Work Experiences of Nurses After Being Diagnosed With Cancer.

PROBLEM IDENTIFICATION: To map key concepts underpinning work-related studies about nurses with cancer and identify knowledge gaps. LITERATURE REVIEW: A search was conducted in the PubMed®, CINAHL®, and PsycINFO® databases for articles about nurses with cancer and work-related topics published through March 2023. DATA EVALUATION: The Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews Checklist was used to report results, and the JBI critical appraisal tools were used to assess the quality of studies. Eleven articles were included. SYNTHESIS: The following four critical concepts were identified: role adjustments at work, cancer impacts on work, organizational support, and translating insights gained from cancer experience into work. Research gaps identified by the scoping review were a lack of theoretical or conceptual frameworks, lack of syntheses of main ideas, and lack of clear data about participants' socioeconomic status across studies. IMPLICATIONS FOR RESEARCH: Minimal research exists to map predictors, outcomes, or intervention targets to guide organizational strategies to support nurses' retention in the nursing workforce. A guiding framework, recruitment of diverse nurses, and focus on the four critical concepts identified in this scoping review are suggested for future research.

Examining Caregiver Outcomes in the CONNECT Intervention for Patients With Advanced Cancer.

CONTEXT: Palliative care offers patient and family centered approaches that may mitigate risk of caregiver burden and poor mood. OBJECTIVES: To determine whether a palliative care intervention (CONNECT) improved burden, mood, and self-efficacy among caregivers of patients with advanced cancer. METHODS: In this cluster randomized trial, patients and their caregivers were recruited from 17 Oncology clinics in Pennsylvania. Participants attended nurse-led monthly visits, addressing patient symptoms, goals of care, and advance care planning. At baseline and three months, we measured caregiver burden using Zarit Burden Interview (ZBI-12; range 0-48), caregiver anxiety and depression using Hospital Anxiety and Depression Scales (HADS-A, range 0-21; HADS-D, range 0-21). We measured caregiver self-efficacy at three months using Caregiver Inventory (CGI; range 0-189). RESULTS: We enrolled 441 caregivers and 381 completed three-month assessments. We found no significant differences in caregiver burden (adjusted mean difference -0.39; 95% CI -1.07-0.29, P = 0.90), depression (adjusted mean difference -0.22, 95% CI -0.97-0.55, P = 0.26), or anxiety (adjusted mean difference 0.09; 95% CI -1.25-1.43, P = 0.58), between the intervention and standard care at three months. Caregiver self-efficacy was higher at three months in the intervention compared to standard care (adjusted mean difference 9.36; 95% CI 0.95-17.77, P = 0.030). CONCLUSION: Caregivers in CONNECT did not experience improved burden or mood, however, they reported higher self-efficacy compared to caregivers receiving standard care. This study highlights the need for strategies to optimize caregiver outcomes in palliative care interventions.

Factors associated with ductal carcinoma in situ (DCIS) treatment patterns and patient-reported outcomes across a large integrated health network.

PURPOSE: To examine associations between ductal carcinoma in situ (DCIS) patients' characteristics, treating locations and DCIS treatments received and to pilot assessing quality-of-life (QoL) values among DCIS patients with diverse backgrounds. METHODS: We performed a retrospective tumor registry review of all patients diagnosed and treated with DCIS from 2018 to 2019 in the UPMC-integrated network throughout central and western Pennsylvania. Demographics, clinical information, and administered treatments were compiled from tumor registry records. We categorized contextual factors such as different hospital setting (academic vs. community), socioeconomic status based on the neighborhood deprivation index (NDI) as well as age and race. QoL survey was administered to DCIS patients with diverse backgrounds via QoL questionnaire breast cancer module 23 and qualitative assessment questions. RESULTS: A total of 912 patients were reviewed. There were no treatment differences noted for age, race, or NDI. Mastectomy rate was higher in academic sites than community sites (29 vs. 20.4%; p = 0.0045), while hormone therapy (HT) utilization rate was higher in community sites (74 vs. 62%; p = 0.0012). QoL survey response rate was 32%. Only HT side effects negatively affected in QoL scores and there was no significant difference in QoL domains and decision-making process between races, age, NDI, treatment groups, and treatment locations. CONCLUSION: Our integrated health network did not show chronically noted disparities arising from social determinates of health for DCIS treatments by implementing clinical pathways and system-wide peer review. Also, we demonstrated feasibility in collecting QoL for DCIS women with diverse backgrounds and different socioeconomic statuses.

Financial Hardship and Quality of Life Among Patients With Advanced Cancer Receiving Outpatient Palliative Care: A Pilot Study.

BACKGROUND: Patients with advanced cancer are increasingly experiencing financial hardship (FH) and associated negative health outcomes. OBJECTIVE: The aims of this study were to describe FH and explore its relationship to quality of life (QOL) in patients with advanced cancer receiving outpatient palliative care (PC). METHODS: Validated questionnaires assessed FH, QOL dimensions, symptom burden, and sociodemographic and clinical characteristics. Descriptive statistics characterized the sample and described FH. Pearson correlation and linear regression assessed relationships between FH and QOL. RESULTS: The average participant (n = 78) age was 56.6 (SD, 12.2) years. Most were female (56.4%), White (50%) or Black (46.2%), and had a range of education, partner statuses, and cancer diagnoses. Median time since cancer diagnosis was 35.5 months (interquartile range, 9-57.3 months). Highest mean symptom burden scores were for pain (2.5 [SD, 1.0]) and fatigue (2.0 [SD, 1.1]), on a 0- to 3-point scale (higher score representing worse symptom burden). The median COST (COmphrehensive Score for financial Toxicity) score was 15.0 (interquartile range, 9.0-23.0). Most (70%) had some (n = 43) or extreme (n = 9) difficulty paying for basic needs. Greater than 28% (n = 21) incurred cancer-related debt. Multivariate models indicated that FH negatively affected role limitations due to physical health ( P = .008), pain ( P = .003), and emotional well-being ( P = .017) QOL dimensions. CONCLUSIONS: Financial hardship, QOL, and symptom burden scores demonstrate need for continued support for and research among patients with advanced cancer. Data support links between FH and important QOL dimensions. Larger, longitudinal studies are needed to understand how FH affects QOL in patients with advanced cancer. IMPLICATIONS FOR PRACTICE: Proactive financial assessment and interventions are needed to support patients with advanced cancer experiencing the cumulative effects of cancer and its treatment.

Using Concept Mapping to Explore Interpersonal Communication Components of Patient Navigation in Breast Cancer Care.

BACKGROUND: Research exploring the relational dimensions of patient navigation identifies interpersonal communication as fundamental to the patient navigator's (PN's) ability to reduce barriers to care and improve cancer care outcomes. Although interpersonal communication is a core competency for PNs, its key components are commonly understudied and overlooked. OBJECTIVE: The purpose of this study was to identify the key interpersonal communication components of patient navigation in breast cancer care that patients, PNs, and PN administrators perceived to impact the patient-navigator relationship. METHODS: This study used concept mapping, a community-engaged research method. Participants completed 3 concept mapping activities: brainstorming, sorting and rating, and interpretation. RESULTS: A total of 31 persons participated in the study: 13 patients, 14 PNs, and 4 PN administrators. The concept mapping analysis produced a 6-cluster concept map, and each concept was named through a group consensus process. Among the 6 concepts, both patients and PNs emphasized the importance of "Empathetic, Comprehensive, and Compassionate Support," "Bridge to Clinical Education and Supportive Resources," and "Ongoing Individualized Coordination of Care" as the most important components for facilitating the patient-navigator relationship. CONCLUSION: Patients, PNs, and PN administrators all emphasized the essential role of interpersonal communication in the PN-patient relationship and how it is woven into every aspect of the PN role. IMPLICATIONS FOR PRACTICE: As a core competency, we need to work toward the development and testing of evidence-based training to support their professional development and ultimately promote positive cancer care outcomes.

Early-stage breast cancer menopausal symptom experience and management: exploring medical oncology clinic visit conversations through qualitative analysis.

PURPOSE: Women being treated with chemotherapy for breast cancer experience menopausal symptoms that vary in presentation and impact on quality of life. The clinical visit before each chemotherapy cycle provides an important opportunity to allow patients to dialogue with their medical oncology healthcare providers about these symptoms and identify strategies for self-management. The objective of this study was to characterize patient and provider interactions regarding the menopausal symptom experience and management in the context of breast cancer treatment. METHODS: Thematic analysis was employed to analyze 61 transcripts from clinical encounters of women receiving chemotherapy treatment for breast cancer. Transcripts were chosen based on their inclusion of menopausal symptom discussion. RESULTS: Themes were separated into three distinct categories: patient, clinician, and dyadic themes. The overarching theme was goal discordance in the clinical visit, which was reflected in the following themes: unexpected and unprepared; distressed, disrupted and disturbed; clinical insensitivity; missed opportunity for management and empathy; and use of humor and colloquial language. Overall, women were unprepared for the menopausal symptom experience, and clinicians did not often provide management, interventions, or empathetic responses. CONCLUSION: There is a need to develop more astute assessment and communication regarding menopausal symptoms during the clinical visit. Possible interventions include a more holistic assessment, algorithms to facilitate the clinician's attention and response to menopausal symptoms, and treatment of symptoms.

Trajectories of neuropsychological symptom burden in postmenopausal women prescribed anastrozole for early-stage breast cancer.

PURPOSE: Aromatase inhibitors (AIs) prolong survival for postmenopausal women with hormone receptor-positive breast cancer (HR + BC) but also burden patients with symptoms, a major reason for suboptimal AI adherence. This study characterizes inter-relationships among symptom measures; describes neuropsychological symptom burden trajectories; and identifies trajectory group membership predictors for postmenopausal women prescribed anastrozole for HR + BC. METHODS: This study utilized prospectively collected data from a cohort study. Relationships among various self-reported symptom measures were examined followed by a factor analysis to reduce data redundancy before trajectory analysis. Four neuropsychological scales/subscales were rescaled (range 0-100) and averaged into a neuropsychological symptom burden (NSB) score, where higher scores indicated greater symptom burden. Group-based trajectory modeling characterized NSB trajectories. Trajectory group membership predictors were identified using multinomial logistic regression. RESULTS: Women (N = 360) averaged 61 years old, were mostly White, and diagnosed with stage I HR + BC. Several measures were correlated temporally but four neuropsychological measures had strong correlations and dimensional loadings. These four measures, combined for the composite NSB, averaged (mean ± standard deviation) 17.4 ± 12.9, 18.0 ± 12.7, 19.5 ± 12.8, and 19.8 ± 13.0 at pre-anastrozole, 6, 12, and 18 months post-initiation, respectively. However, the analysis revealed five NSB trajectories-low-stable, low-increasing, moderate-stable, high-stable, and high-increasing. Younger age and baseline medication categories (pre-anastrozole), including anti-depressants, analgesics, anti-anxiety, and no calcium/vitamin D, predicted the higher NSB trajectories. CONCLUSION: This study found relationships among neuropsychological symptom measures and distinct trajectories of self-reported NSB with pre-anastrozole predictors. Identifying symptom trajectories and their predictors at pre-anastrozole may inform supportive care strategies via symptom management interventions to optimize adherence for women with HR + BC.

Burnout Among Oncology Nurses: The Effects of Providing a Primary Palliative Care Intervention Using CONNECT Protocol.

BACKGROUND: Palliative care clinicians display less burnout than oncology clinicians. Little is known about the impact of providing both oncology care and primary palliative care in the same setting. OBJECTIVES: The aim was to determine whether nurses providing primary palliative care in addition to oncology care would experience less burnout over time than nurses providing oncology care only. METHODS: The authors performed secondary analysis of the CONNECT study. Three groups of nurses were evaluated: primary palliative care, non-primary palliative care, and standard care. On study enrollment and after one year, nurses completed the Maslach Burnout Inventory. Multivariable regression analyses were performed to test differences in follow-up burnout scores between groups. FINDINGS: Overall burnout rates were low at enrollment for all groups. There were no differences in burnout scores at one year between nurses who provided palliative care and nurses in the other two groups. .

Power and Privilege: A Critical Analysis of Interpersonal Communication in Health Care as a Guide for Oncology Patient Navigation in Breast Cancer Care.

Despite advances in cancer care, inequalities in race, ethnicity, and social class in breast cancer outcomes still exist. Interpersonal communication is a critical piece to addressing health disparities and it is a core component of the oncology patient navigator role. While widely used, the concept of interpersonal communication is vague, understudied, and requires better clarification to promote equity in health communication. The aim of this article is to investigate the concept of interpersonal communication through a critical lens. Findings from this critical analysis identified a gap in the current literature addressing the intersections of race, gender, and social class.

Hope and advance care planning in advanced cancer: Is there a relationship?

BACKGROUND: Clinicians often cite a fear of giving up hope as a reason they defer advance care planning (ACP) among patients with advanced cancer. The objective of this study was to determine whether engagement in ACP affects hope in these patients. METHODS: This was a secondary analysis of a randomized controlled trial of primary palliative care in advanced cancer. Patients who had not completed ACP at baseline were included in the analysis. ACP was assessed in the forms of an end-of-life (EOL) conversation with one's oncologist and completion of a living will or advance directive (AD). Measurements were obtained at baseline and at 3 months. Hope was measured using the Herth Hope Index (HHI) (range, 12-48; higher scores indicate higher hope). Multivariate regression was performed to assess associations between ACP and hope, controlling for baseline HHI score, study randomization, patient age, religious importance, education, marital status, socioeconomic status, time since cancer diagnosis, pain/symptom burden (Edmonton Symptom Assessment System), and anxiety/depression score (Hospital Anxiety and Depression Scale)-all variables known to be associated with ACP and/or hope. RESULTS: In total, 672 patients with advanced cancer were enrolled in the overall study. The mean age was 69 ± 10 years, and the most common cancer types were lung cancer (36%), gastrointestinal cancer (20%) and breast/gynecologic cancers (16%). In this group, 378 patients (56%) had not had an EOL conversation at baseline, of whom 111 of 378 (29%) reported having an EOL conversation by 3 months. Hope was not different between patients who did or did not have an EOL conversation over the study period (mean ± standard deviation ∆HHI, 0.20 ± 5.32 vs -0.53 ± 3.80, respectively; P = .136). After multivariable adjustment, hope was significantly increased in patients who had engaged in an EOL conversation (adjusted mean difference in ∆HHI, 0.95; 95% CI, 0.08-1.82; P = .032). Similarly, of 216 patients (32%) without an AD at baseline, 67 (31%) had subsequently completed an AD. Unadjusted hope was not different between those who did and did not complete an AD (∆HHI, 0.20 ± 3.89 vs -0.91 ± 4.50, respectively; P = .085). After adjustment, hope was significantly higher in those who completed an AD (adjusted mean difference in ∆HHI, 1.31; 95% CI, 0.13-2.49; P = .030). CONCLUSIONS: The current results demonstrate that hope is not decreased after engagement in ACP and indeed may be increased. These findings may provide reassurance to clinicians who are apprehensive about having these important and difficult conversations. LAY SUMMARY: Many oncologists defer advance care planning (ACP) out of concern for giving up hope. This study demonstrates that hope is not decreased in patients who have engaged in ACP either as a conversation with their oncologists or by completing an advance directive. With this information, providers may feel more comfortable having these important conversations with their patients.

Nurse-Led Palliative Care Clinical Trial Improves Knowledge and Preparedness in Caregivers of Patients with Idiopathic Pulmonary Fibrosis.

Rationale: Patients with idiopathic pulmonary fibrosis (IPF) and their caregivers experience stress, symptom burden, poor quality of life, and inadequate preparedness for end-of-life (EOL) care planning as the disease progresses. The hypothesis for this study was that the early introduction of palliative care in the course of IPF would improve knowledge and preparation for EOL, patient-reported outcomes, and advance care planning in patients with IPF and their caregivers. Objectives: We sought to determine the feasibility, acceptability, and efficacy of a nurse-led early palliative care intervention entitled "A Program of SUPPORT" (Symptom management, Understanding the disease, Pulmonary rehabilitation, Palliative care, Oxygen therapy, Research participation, and Transplantation) in patients with IPF and their caregivers. Methods: Patients with IPF (diagnosed in the year previous to their initial center visit) from the University of Pittsburgh Dorothy P. and Richard P. Simmons Center for Interstitial Lung Disease at University of Pittsburgh Medical Center-together with their caregivers-were randomized to receive the intervention "A Program of SUPPORT" or usual care. This included a total of three research visits aligned with their clinic visit over a period of 6 to 8 months. We measured feasibility, acceptability, and efficacy of this intervention. Results: A total of 136 patient/caregiver dyads were eligible, and a total of 76 dyads were enrolled and participated. Participants were predominately White males >65 years old. Thirteen percent did not have an identified caregiver. Feasibility was limited; 56% of eligible dyads were enrolled. Eligible dyads (24%) were interested in participating but too fatigued to stay after their clinic visit. There was high attrition (20% of participants died before the study was completed). "A Program of SUPPORT" was acceptable to participants. Efficacy demonstrated a significant improvement in caregiver's knowledge, disease preparedness, and confidence in caring for the patient as well as an improvement in knowledge and advance care planning completion in patient participants. Conclusions: Patients with IPF and their caregivers have unmet needs regarding knowledge of their disease, self-management strategies, and preparedness for EOL planning. This nurse-led intervention demonstrated acceptability and efficacy in knowledge and advance care planning completion in patients and in knowledge, disease preparedness, and confidence in caregivers. Future research should identify additional strategies, including telemedicine resources to reach additional patients and their caregivers earlier in their disease course. Clinical trial registered with clinicaltrials.gov (NCT02929017).

Prevalence, pattern, and probability for goals of care discussions among women diagnosed with metastatic breast cancer.

PURPOSE: High quality advanced cancer care includes goals of care (GOC) discussions and should be tailored according to clinical diagnosis, patient characteristics, and in concordance with patient's goals. Metastatic breast cancer (MBC) and treatment has heterogeneity according to subtype which makes the timing of initiating and continuing GOC discussions challenging. With an ever-increasing array of therapy, women with advanced stage disease are unique survivors in that they receive relatively aggressive cancer care to not only palliative symptoms but extend survival time. It is the purpose of this paper to explore the prevalence, pattern, and likelihood of having a GOC discussion according to key tumor, demographic, social, and clinical factors. METHODS: A single-institution retrospective chart review of women deceased from MBC between November 2016 and November 2019 with double verification chart review was completed. Data were analyzed with descriptive, correlative, and comparative statistics. RESULTS: Total sample was N=167 women, with 14.4% (n=24) Black and 85.6% (n=143) White. Mean age was 55.3 years (SD 11.73). Overall, MBC survival was 3.12 years (SD 3.31), White women 41.2 (3.4 years) months, and Black women 19 (1.6 years) months. A total of 87.4% (n=146) participated in one or more GOC discussions. GOC discussions were more likely among those who were referred to palliative care (p<0.001) and social work (p=0.035) services. Of the GOC discussions, only 29.3% were conducted by the primary oncologist. Black women were more likely to have GOC discussion near death. CONCLUSION AND IMPLICATIONS: Advanced stage cancers are treated, at times relatively aggressively, to extend survival time instead of merely offering palliation. This new paradigm of survivorship requires thoughtful integration of GOC conversations. Describing the current status of GOC discussions among a cohort of women deceased from MBC highlights the patients most vulnerable to having a GOC discussion avoided or delayed. These identified vulnerabilities will indicate where targeted interventions can be implemented in the future.

Knowledge and Attitudes About Genetic Testing Among Black and White Women with Breast Cancer.

Prior to embarking on a large descriptive evaluation of genetic/racial variations in symptom phenotype, we sought foundational information to determine racial differences in (1) feasibility (consent) and acceptability of collecting genomic samples, (2) genetic literacy, and (3) concerns of genomic research during breast cancer (BC) chemotherapy. Women with early-stage BC undergoing chemotherapy were recruited from an academic, urban breast care center. Information was collected for consent to participate, genetic literacy, and concerns about genetic testing in Black and White women with BC. Fifty-six women were eligible, and 48 were consented (24 Black, 24 White). All participants consented to blood testing. This highly educated sample's mean age was 52.5 + 12.05 (years). Education (years) and genetic knowledge were positively correlated (p = .038). Genetic scores were high, and only one question significantly differed by race. On interview, most participants thought conducting genetic research helped to better understand hereditary disease and/or identify genes that cause disease and stated that they participated in the research to help other people. The majority of participants responded that friends/family would participate in genetic research without concerns, though three Black participants cited mistrust as a possible concern. Overall, there were high levels of genetic knowledge, slightly different between Black and White women. There were no high levels of personal concern regarding genetic testing. Black women reported more concern than White women that friends/family would have hesitations about participating in genetic research. There was general acceptability of blood collection for genetic testing among women with early-stage BC without racial difference.

A Conceptual Framework of Self-advocacy in Women With Cancer.

Researchers define self-advocacy as the ability of an individual with cancer to overcome challenges in getting their preferences, needs, and values met. While imperative in all health care settings, self-advocacy is especially important in cancer care. The goal of this article is to present a conceptual framework for self-advocacy in cancer. We review foundational studies in self-advocacy, define the elements of the conceptual framework, discuss underlying assumptions of the framework, and suggest future directions in this research area. This framework provides an empirical and conceptual basis for studies designed to understand and improve self-advocacy among women with cancer.

Protocol for Symptom Experience, Management, Outcomes, and Adherence in Women Receiving Breast Cancer Chemotherapy.

BACKGROUND: The 5-year survival for Black women with breast cancer in the United States is lower than White women for stage-matched disease. Our past and ongoing work and that of others suggest that symptom incidence, cancer-related distress, and ineffective communication contribute to racial disparity in dose reduction and early therapy termination. Although race is perhaps the most studied social determinant of health, it is clear that race alone does not account for all disparities. OBJECTIVES: The aim of the study was to present a study protocol of Black and White women prescribed breast cancer chemotherapy. The aims are to (1) examine and compare chemotherapy received/prescribed over time and in total; (2a) examine and compare symptom incidence, distress, and management and clinical encounter, including patient-centeredness of care and management experience over time and (2b) correlate symptom incidence, distress, and management experience to Aim 1; and (3) explore the effects of social determinants of health, including age, income, education, zip code, and lifetime stress exposure, on Aims 1, 2a, and 2b. METHODS: A longitudinal, repeated-measures (up to 18 time points), comparative, mixed-methods design is employed with 179 White and 179 Black women from 10 sites in Western Pennsylvania and Northeast Ohio over the course of chemotherapy and for 2 years following completion of therapy. RESULTS: The study began in January 2018, with estimated complete data collection by late 2023. DISCUSSION: This study is among the first to explore the mechanistic process for racial disparity in dosage and delay across the breast cancer chemotherapy course. It will be an important contribution to the explanatory model for breast cancer treatment disparity and may advance potential mitigation strategies for racial survival disparity.

Symptom Experience, Management, and Outcomes According to Race and Social Determinants Including Genomics, Epigenomics, and Metabolomics (SEMOARS + GEM): an Explanatory Model for Breast Cancer Treatment Disparity.

Even after controlling for stage, comorbidity, age, and insurance status, black women with breast cancer (BC) in the USA have the lowest 5-year survival as compared with all other races for stage-matched disease. One potential cause of this survival difference is the disparity in cancer treatment, evident in many population clinical trials. Specifically, during BC chemotherapy, black women receive less relative dose intensity with more dose reductions and early chemotherapy cessation compared with white women. Symptom incidence, cancer-related distress, and ineffective communication, including the disparity in patient-centeredness of care surrounding patient symptom reporting and clinician assessment, are important factors contributing to racial disparity in dose reduction and early therapy termination. We present an evidence-based overview and an explanatory model for racial disparity in the symptom experience during BC chemotherapy that may lead to a reduction in dose intensity and a subsequent disparity in outcomes. This explanatory model, the Symptom Experience, Management, Outcomes and Adherence according to Race and Social determinants + Genomics Epigenomics and Metabolomics (SEMOARS + GEM), considers essential factors such as social determinants of health, clinician communication, symptoms and symptom management, genomics, epigenomics, and pharmacologic metabolism as contributory factors.