Risk-management decision-making data from a community-based sample of racially diverse women at high risk of breast cancer: rationale, methods, and sample characteristics of the Daughter Sister Mother Project survey.

BACKGROUND: To understand the dynamics that limit use of risk-management options by women at high risk of breast cancer, there is a critical need for research that focuses on patient perspectives. Prior research has left important gaps: exclusion of high-risk women not in risk-related clinical care, exclusion of non-white populations, and lack of attention to the decision-making processes that underlie risk-management choices. Our objective was to create a more inclusive dataset to facilitate research to address disparities related to decision making for breast cancer risk management. METHODS: The Daughter Sister Mother Project survey collects comprehensive information about the experiences of women at high risk of breast cancer. We collected novel measures of feelings about and reactions to cancer screenings; knowledge, barriers, and facilitators of risk-management options; beliefs related to cancer risk and risk management; and involvement with loved ones who had cancer. Eligible individuals were non-Hispanic white and non-Hispanic Black adult women who self-identified as having high risk of breast cancer and had no personal history of cancer. Between October 2018 and August 2019, 1053 respondents completed the online survey. Of these, 717 were confirmed through risk prediction modeling to have a lifetime breast cancer risk of ≥ 20%. Sociodemographic characteristics of this sample were compared to those of nationally representative samples of the US population: the 2019 Health Information National Trends Survey and the Pew Research Center report: Jewish Americans in 2020. RESULTS: The sample of 717 women at objectively high risk of breast cancer was largely (95%) recruited from non-clinical sources. Of these respondents, only 31% had seen a genetic counselor, 34% had had genetic testing specific to breast cancer risk, and 35% had seen at least one breast or cancer care specialist. The sample includes 35% Black respondents and 8% with Ashkenazi Jewish ancestry. Although encompassing a substantial range of ages, incomes, and education levels, respondents are overall somewhat younger, higher-income, and more educated than the US population as a whole. CONCLUSIONS: The DSM dataset offers comprehensive data from a community-based, diverse sample of women at high risk of breast cancer. The dataset includes substantial proportions of Black and Ashkenazi Jewish women and women who are not already in clinical care related to their breast cancer risk. This sample will facilitate future studies of risk-management behaviors among women who are and are not receiving high-risk care, and of variations in risk-management experiences across race and ethnicity.

Patient-driven decisions and perceptions of the 'safest possible choice': insights from patient-provider conversations about how some breast cancer patients choose contralateral prophylactic mastectomy.

OBJECTIVE: Observe patient-clinician communication to gain insight about the reasons underlying the choice of patients with unilateral breast cancer to undergo contralateral prophylactic mastectomy (CPM), despite lack of survival benefit, risk of harms, and cautions expressed by surgical guidelines and clinicians. METHODS & MEASURES: WORDS is a prospective study that explored patient-clinician communication and patient decision making. Participants recorded clinical visits through a downloadable mobile application. We analyzed 44 recordings from 22 patients: 9 who chose CPM, 8 who considered CPM but decided against it, and 5 who never considered CPM. We used abductive analysis combined with constructivist grounded theory methods. RESULTS: Decisions to undergo CPM are patient-driven and motivated by perceptions that CPM is the most aggressive, and therefore safest, treatment option available. These decisions are shaped not primarily by the content of conversations with clinicians, but by the history of cancer in patients' families, their own first-hand experiences with cancers among loved ones, fear for their children, and anxiety about cancer recurrence. CONCLUSION: The perception that CPM is the safest, most aggressive option strongly influences patients, despite scientific evidence to the contrary. Future efforts to address high CPM rates should focus on patient-driven decision making and cancer-related fears.

A Video Intervention to Improve Patient Understanding of Tumor Genomic Testing in Patients with Cancer.

Background: Tumor genomic testing (TGT) has become standard-of-care for most patients with advanced/metastatic cancer. Despite established guidelines, patient education prior to TGT is variable or frequently omitted. The purpose of this study was to evaluate the impact of a concise (3-4 minute) video for patient education prior to TGT. Methods: Based on a quality improvement cycle, an animated video was created to be applicable to any cancer type, incorporating culturally diverse images, available in English and Spanish. Patients undergoing standard-of care TGT were enrolled at a tertiary academic institution and completed validated survey instruments immediately prior to video viewing (T1) and immediately post-viewing (T2). Instruments included: 1) 10-question objective genomic knowledge/understanding; 2) 10-question video message-specific knowledge/recall; 3) 11-question Trust in Physician/Provider; 4) attitudes regarding TGT. The primary objective was change in outcomes from before to after the video was assessed with Wilcoxon signed rank test. Results: From April 2022 to May 2023, a total of 150 participants were enrolled (MBC n=53, LC n=38, OC n=59). For the primary endpoint, there was a significant increase in video message-specific knowledge (median 10 point increase; p<0.0001) with no significant change in genomic knowledge/understanding (p=0.89) or Trust in Physician/Provider (p=0.59). Results for five questions significantly improved, including the likelihood of TGT impact on treatment decision, incidental germline findings, and cost of testing. Improvement in video message-specific knowledge was consistent across demographic groups, including age, income, and education. Individuals with less educational attainment had had greater improvement from before to after video viewing. Conclusions: A concise, 3-4 minute, broadly applicable video incorporating culturally diverse images administered prior to TGT significantly improved video message-specific knowledge across all demographic groups. This resource is publicly available at http://www.tumor-testing.com, with a goal to efficiently educate and empower patients regarding TGT while addressing guidelines within the flow of clinical practice. Clinical Trial Registration: ClinicalTrials.gov NCT05215769.

Turning the Page on Breast Cancer in Ohio: Lessons learned from implementing a multilevel intervention to reduce breast cancer mortality among Black women.

BACKGROUND: Turning the Page on Breast Cancer (TPBC) uses a multilevel approach to reduce breast cancer (BC) mortality among Black women. TPBC intervenes by (1) improving health care facilities' ability to conduct effective BC screening, follow-up, and treatment; (2) involving community-based organizations; and (3) providing education and personal risk information through a culturally relevant website. Ohio has among the worst BC mortality rates in the United States for Black women. TPBC is in its third year of providing targeted interventions in 12 Ohio counties with particularly high BC rates among Black women. METHODS: TPBC enrolls health care facilities, collects organizational and patient data, and conducts key informant interviews to inform the provision of appropriate evidence-based interventions. TPBC engages Black communities through community-based organizations and social media advertising. The TPBC website offers BC information, connects Black women to community BC resources, and provides access to a risk-assessment tool. RESULTS: TPBC has provided tailored information packets, evidence-based interventions, and systematic support for improving the tracking and follow-up of breast health care among patients in 10 clinical partnerships. The project has provided education at community events monthly since mid-2021. The TPBC website (http://endbreastcancerohio.org) is promoted through social media (primarily Facebook) and community events to reach Black women aged 25-70 years. To date, 4108 unique users have visited the website, of whom 15.9% completed the risk assessment. CONCLUSIONS: Novel strategies are needed to address persistent disparities in BC outcomes among Black women. TPBC demonstrates the potential effectiveness of multiple methods of community-based, clinic-based, and web-based engagement. PLAIN LANGUAGE SUMMARY: Turning the Page on Breast Cancer (TPBC) aims to reduce breast cancer mortality among Black women in Ohio by conducting multilevel, community-engaged interventions in 12 counties. Women are provided risk information and education at virtual and in-person community events and through a community-friendly website that was launched in November 2020. Almost 4000 women have visited the website, which offers community-targeted information, urges screening for individuals at elevated risk, and offers access to patient navigation services; 655 users have used a breast cancer risk-assessment tool on the site. Community-based organizations conduct educational efforts. TPBC partners with health care facilities, which are taught to improve their ability to conduct effective breast cancer screening, follow-up, and treatment. So far, TPBC has provided educational information, evidence-based intervention lists, tailored information packets, and ongoing quarterly support to partners in 10 counties. Evaluation will focus on aggregated data for screening and genetic testing referral at the clinic level.

Racial differences in prevention decision making among U.S. women at high risk of breast cancer: A qualitative study.

PURPOSE: Women at high risk of breast cancer face complex decisions about how to manage those risks. Substantial gaps in current knowledge include how women make these decisions and how decision making may differ across sub-populations. Among these critical gaps are the questions of (a) whether racial differences exist between the experiences of high-risk women navigating breast cancer risk, and (b) what consequences those racial differences might have on women's ability to manage their cancer risks. The present study is designed to address these questions directly. METHODS: Fifty semi-structured interviews were conducted with high-risk Black (n = 20) and white women (n = 30) between May 2015 and March 2016 in person in Ohio and by phone. Transcribed data were analyzed using grounded theory methods. MAIN FINDINGS: Our analyses suggest that many of the core decision-making dynamics high-risk women navigate differ by race. The experiences of white and Black women in our study differ in terms of (a) contextualizing risk-how women make sense of their own breast cancer risk, the degree to which they worry about risk, and how they prioritize risk within the contexts of their broader lives; (b) conceptualizing risk management-how, how much, and from whom women learn about and conceptualize their options for preventing cancer and/or ensuring that cancer gets diagnosed early; and (c) constraints-the external barriers women face throughout their decision-making and risk-management processes. In sum, the Black women we interviewed reported feeling less well-situated to consider and cope actively with breast cancer risk, less well-informed about risk-management options, and more constrained in their use of these options. CONCLUSIONS: High-risk women's accounts of the complex dynamics that shape breast cancer prevention decisions suggest that these dynamics vary substantially by race, such that Black women may experience disadvantages relative to whites.

Patient Understanding of Tumor Genomic Testing: A Quality Improvement Effort.

PURPOSE: Tumor genomic testing (TGT) has become increasingly adopted as part of standard cancer care for many cancers. Despite national guidelines around patient education before TGT, available evidence suggests that most patients' understanding of genomics remains limited, particularly lower-income and minority patients, and most patients are not informed regarding potential incidental germline findings. METHODS: To investigate and address limitations in patient understanding of TGT results, a Plan-Do-Study-Act (PDSA) approach is being used to assess needs, identify opportunities for improvement, and implement approaches to optimize patient education. We reviewed published guidelines related to pre-TGT provider-patient education and to identify key points (Plan). A provider quality improvement survey was completed (Do), which highlighted inconsistency in pre-TGT discussion practice across providers and minimal discussion with patients regarding the possibility of incidental germline findings. RESULTS: Patient focus groups and interviews (N = 12 patients) were completed with coding of each transcript (Study), which revealed themes including trouble differentiating TGT from other forms of testing, yet understanding that results could tailor therapy. The integration of data across this initial PDSA cycle identified consistent themes and opportunities, which were incorporated into a patient-directed, concise animated video for pre-TGT education (Act), which will form the foundation of a subsequent PDSA cycle. The video addresses how TGT may/may not inform treatment, the process for TGT using existing tissue or liquid biopsy, insurance coverage, and the potential need for germline genetics follow-up because of incidental findings. CONCLUSION: This PDSA cycle reveals key gaps and opportunities for improvement in patient education before TGT.

Emotion and contralateral prophylactic mastectomy: A prospective study into surgical decision-making.

OBJECTIVE: Patients with non-familial, unilateral breast cancer have a low risk of contralateral breast cancer. Thus, clinical studies have shown no survival benefit for patients who undergo contralateral prophylactic mastectomy (CPM) compared to those undergoing unilateral surgeries for non-familial unilateral breast cancers. Despite this evidence, there has been a steady increase in rates of CPM in the U.S. Patient factors influencing this choice have been identified in previous studies, but seldom in a prospective manner. This prospective study was designed to assess emotion and any association with a patient's decision to ultimately undergo CPM. METHODS: We recruited patients with newly diagnosed, unilateral, non-metastatic breast cancer, who had not yet had surgery, to participate in a prospective, longitudinal study to examine the impact of emotions on CPM decision-making. RESULTS: Among the 86 final participants, all completed the pre-visit survey (100%) and 52 patients completed the post-visit survey (60%). Patients undergoing CPM were significantly younger than those who did not. There was no statistically significant association between emotion and receipt of CPM. There was a trend towards undergoing CPM in patients with a less open personality type and those with more negative emotion, though not statistically significant. CONCLUSIONS: This study found a trend toward increased CPM receipt in those with less open personality types and more negative emotion, especially post-consultation, but none of these findings was significant. Future work should include development of cancer-specific emotion scales and larger studies of possible connections between emotion, personality type and surgical decision-making for breast cancer patients.

Predicting breast cancer risk in a racially diverse, community-based sample of potentially high-risk women.

BACKGROUND: Identifying women with high risk of breast cancer is necessary to study high-risk experiences and deliver risk-management care. Risk prediction models estimate individuals' lifetime risk but have rarely been applied in community-based settings among women not yet receiving specialized care. Therefore, we aimed: (1) to apply three breast cancer risk prediction models (i.e., Gail, Claus, and IBIS) to a racially diverse, community-based sample of women, and (2) to assess risk prediction estimates using survey data. METHODS: An online survey was administered to women who were determined by a screening instrument to have potentially high risk for breast cancer. Risk prediction models were applied using their self-reported family and medical history information. Inclusion in the high-risk subsample required ≥20% lifetime risk per ≥1 model. Descriptive statistics were used to compare the proportions of women identified as high risk by each model. RESULTS: N = 1053 women were initially eligible and completed the survey. All women, except one, self-reported the information necessary to run at least one model; 90% had sufficient information for >1 model. The high-risk subsample included 717 women, of which 75% were identified by one model only; 96% were identified by IBIS, 3% by Claus, <1% by Gail. In the high-risk subsample, 20% were identified by two models and 3% by all three models. CONCLUSIONS: Assessing breast cancer risk using self-reported data in a community-based sample was feasible. Different models identify substantially different groups of women who may be at high risk for breast cancer; use of multiple models may be beneficial for research and clinical care.

More than treatment refusal: a National Cancer Database analysis of adjuvant treatment refusal and racial survival disparities among women with endometrial cancer.

BACKGROUND: Disparities in adjuvant treatment between Black and White women with endometrial cancer exist and contribute to worse outcomes among Black women. However, factors leading to disparate treatment receipt are understudied. OBJECTIVE: We examined whether patient refusal of adjuvant treatment (chemotherapy or radiation) differed between Black and White women and whether treatment refusal mediated racial disparities in survival among women with endometrial cancer. STUDY DESIGN: We used the National Cancer Database, a hospital-based cancer registry, to identify non-Hispanic Black and non-Hispanic White women diagnosed with endometrial cancer from 2004 to 2016 who either received or refused recommended radiation or chemotherapy. We used logistic regression to estimate multivariable-adjusted odds ratios and 95% confidence intervals for associations between race and treatment refusal. We also examined predictors of treatment refusal in race-specific models. Accelerated failure time models were used to estimate absolute differences in overall survival by race. We used causal mediation analysis to estimate the proportion of racial differences in overall survival attributable to racial differences in adjuvant treatment refusal. We considered the overall study population and strata defined by histology, and adjusted for sociodemographic, tumor, and facility characteristics. RESULTS: Our analysis included 75,447 endometrial cancer patients recommended to receive radiation and 60,187 endometrial cancer patients recommended to receive chemotherapy, among which 6.4% and 11.4% refused treatment, respectively. Among Black women recommended for radiation or chemotherapy, 6.4% and 9.6% refused, respectively. Among White women recommended for radiation or chemotherapy, 6.4% and 11.8% refused, respectively. After adjusting for sociodemographic variables, facility characteristics, and tumor characteristics, Black women were more likely to refuse chemotherapy than White women (adjusted odds ratio, 1.26; 95% confidence interval, 1.15-1.37), but no difference in radiation refusal was observed (adjusted odds ratio, 1.00; 95% confidence interval, 0.91-1.11). Some predictors of radiation refusal varied by race, namely income, education, histology, stage, and chemotherapy receipt (P interactions<.05), whereas predictors of chemotherapy refusal were generally similar between Black and White women. Among women recommended for radiation, Black women survived an average of 4.3 years shorter than White women, which did not seem attributable to differences in radiation refusal. Among women recommended for chemotherapy, Black women survived an average of 3.2 years shorter than White women of which 1.9 months (4.9%) could potentially be attributed to differences in chemotherapy refusal. CONCLUSION: We observed differences in chemotherapy refusal by race, and those differences may be responsible for up to about 2 months of the overall 3.2-year survival disparity between White and Black women. Radiation refusal did not explain any of the 4.3-year disparity among women recommended for radiation. Treatment refusal accounts for, at most, a small fraction of the total racial disparity in endometrial cancer survival. Although a better understanding of the reasons for patient treatment refusal and subsequent intervention may help improve outcomes for some women, other causes of disparate outcomes, particularly those reflecting the social determinants of health, must be investigated.

Understanding low chemoprevention uptake by women at high risk of breast cancer: findings from a qualitative inductive study of women's risk-reduction experiences.

BACKGROUND: Chemoprevention is one of several methods that have been developed to help high-risk women reduce their risk of breast cancer. Reasons for the low uptake of chemoprevention are poorly understood. This paper seeks a deeper understanding of this phenomenon by drawing on women's own narratives about their awareness of chemoprevention and their risk-related experiences. METHODS: This research is based on a parent project that included fifty in-depth, semi-structured interviews with a purposive sample of African American and White women at elevated risk of breast cancer. This specific study draws on the forty-seven interviews conducted with women at high or severe risk of breast cancer, all of whom are eligible to use chemoprevention for breast cancer risk-reduction. Interviews were analyzed using grounded theory methods. RESULTS: Forty-five percent of participants, and only 21% of African American participants, were aware of chemoprevention options. Women who had seen specialists were more likely to be aware, particularly if they had ongoing specialist access. Aware and unaware women relied on different types of sources for prevention-related information. Those whose main source of information was a healthcare provider were more likely to know about chemoprevention. Aware women used more nuanced information gathering strategies and worried more about cancer. Women simultaneously considered all risk-reduction options they knew about. Those who knew about chemoprevention but were reluctant to use it felt this way for multiple reasons, having to do with potential side effects, perceived extreme-ness of the intervention, similarity to chemotherapy, unknown information about chemoprevention, and reluctance to take medications in general. CONCLUSIONS: Lack of chemoprevention awareness is a critical gap in women's ability to make health-protective choices. Future research in this field must consider complexities in both women's perspectives on chemoprevention and the reasons they are reluctant to use it.

Financial Anxiety is Associated With Cancer Screening Adherence in Women at High Risk of Breast Cancer.

BACKGROUND: Previous studies have examined the impact of material financial hardship on cancer screening but without focusing on the psychological aspects of financial hardship. PURPOSE: This study examined the effects of different types of financial anxiety on adherence to breast cancer screening in women at high risk of breast cancer. Adherence to cervical cancer screening was also examined to determine whether associations between financial anxiety and screening adherence were unique to breast cancer screening or more general. METHODS: Women (n = 324) aged 30-50 and at high risk for inherited breast cancer completed a survey on general financial anxiety, worry about affording healthcare, financial stigma due to cancer risk, and adherence to cancer screening. Multivariate analyses controlled for poverty, age, and race. RESULTS: More financial anxiety was associated with lower odds of mammogram adherence (odds ratio [OR] = 0.97, confidence interval [CI] = 0.94, 0.99), Pap smear adherence (OR = 0.98, CI = 0.96, 0.996), and clinical breast examination adherence (OR = 0.98, CI = 0.96, 0.995). More worry about affording healthcare was associated with lower odds of clinical breast examination adherence (OR = 0.95, CI = 0.91, 0.9992) but not mammogram or Pap smear adherence (p > .05). Financial stigma due to cancer risk was associated with lower odds of Pap smear adherence (OR = 0.87, CI = 0.77, 0.97) but no other cancer screenings (p > .07). CONCLUSIONS: Financial anxiety may impede cancer screening, even for high-risk women aware of their risk status. Clinical interventions focused on social determinants of health may also need to address financial anxiety for women at high risk of breast cancer.

Financial constraints on genetic counseling and further risk-management decisions among U.S. women at elevated breast cancer risk.

Clinical guidelines recommend that women at high risk of breast cancer should consider various risk-management options, which remain widely underutilized. We conducted semi-structured, qualitative interviews with 50 high-risk women to understand how financial constraints affect use of genetic counseling, genetic testing, and further risk-management decisions. Inductive analyses revealed three categories of health-related financial constraint: (a) lack of insurance, (b) underinsurance, and (c) other financial constraints (e.g., medical debt, raising children, managing comorbidities). Various breast cancer risk-management actions were limited by these financial constraints, including genetic counseling, genetic testing, enhanced screening, and prophylactic surgeries. Women's narratives also identified complex relationships between financial constraint and perceptions of healthcare providers and insurance companies, particularly as related to bias, price transparency, and potential genetic discrimination. Results from this study have implications for further research and expansion of genetic counseling services delivery to more economically and racially diverse women.

Layers of information: interacting constraints on breast cancer risk-management by high-risk African American women.

Objectives: To understand how various decision-making dynamics interact to shape the risk-management choices of African American women at high-risk of breast cancer, and to explore whether African American and White women have differential access to the information and interactions that promote proactive, confident risk-management behavior.Design: This paper draws on 50 original in-depth, semi-structured interviews with African American and White women at elevated risk of breast cancer. We used inductive grounded-theory methodology to explore the processes by which women make risk-management decisions and to compare those processes between racial groups. Moving backward from women's decisions about whether or not to engage in specific risk-management behaviors, we explored the patterns that underlie behavioral decisions.Results: We find that decisions to engage in risk-management behavior rest on three accumulated layers of information. The layer most proximal to making risk-management decisions involves specific information about risk-management options; the middle layer involves general information about managing breast cancer risk; and the foundational layer involves personal perceptions of breast cancer risk and prevention. African American and White women experience distinct dynamics at each of these levels, and these differences may help explain racial differences in risk-management behavior. Compared to their White counterparts, African American women faced additional burdens at every step along the risk-management journey.Conclusion: These findings suggest that information gathering is more complex than has previously been addressed, that information access and provider access are closely related, and that African American women may be systematically disadvantaged with respect to information-generating experiences. Preventing cancer morbidity and mortality requires that all high-risk women have access to the layers of information necessary to engage in cancer screenings and preventive interventions. These results exemplify the ways that structural, social, and interpersonal inequalities combine to influence risk-management choices.

Experiencing the cancer of a loved one influences decision-making for breast cancer prevention.

Prior research demonstrates that family history influences breast cancer prevention decisions among healthy women at elevated risk of the disease. Drawing on in-depth interviews with 50 African American and White women, this study reveals an important psychological mechanism of this relationship: exposure to cancer among loved ones. Four distinct categories of cancer exposure (Abstract, Generalized, Practical, and Traumatic), distinguished by the characteristics of women's experiences with cancer among family members and close friends, are associated with differences in knowledge and decisions about breast cancer prevention options. Racial differences and distinct experiences among those with BRCA mutations are also discussed.

Distinctive psychological and social experiences of women choosing prophylactic oophorectomy for cancer prevention.

Women known to have significantly elevated ovarian cancer risk due to genetic mutations or family history can reduce this risk by surgically removing both ovaries and fallopian tubes (RRBSO, risk-reducing bilateral salpingo-oophorectomy). We used interpretive phenomenological analysis (IPA) to explore the psychosocial experiences of women who chose RRBSO for cancer prevention. We extended the traditional use of IPA to compare the experiences of women who chose RRBSO for cancer prevention to those of women who underwent similar gynecologic surgery for benign indications. The analysis resulted in three superordinate themes describing women's psychosocial experiences related to RRBSO: (a) psychological facets of cancer risk (b) social support and (c) shared medical decision making. Findings illustrate that women choosing RRBSO for cancer prevention experience heightened psychosocial challenges before and after surgery compared to women undergoing surgery for benign indication. Furthermore, they may need distinct types of information and support from healthcare providers.

Decision making for breast cancer prevention among women at elevated risk.

Several medical management approaches have been shown to be effective in preventing breast cancer and detecting it early among women at elevated risk: 1) prophylactic mastectomy; 2) prophylactic oophorectomy; 3) chemoprevention; and 4) enhanced screening routines. To varying extents, however, these approaches are substantially underused relative to clinical practice recommendations. This article reviews the existing research on the uptake of these prevention approaches, the characteristics of women who are likely to use various methods, and the decision-making processes that underlie the differing choices of women. It also highlights important areas for future research, detailing the types of studies that are particularly needed in four key areas: documenting women's perspectives on their own perceptions of risk and prevention decisions; explicit comparisons of available prevention pathways and their likely health effects; the psychological, interpersonal, and social processes of prevention decision making; and the dynamics of subgroup variation. Ultimately, this research could support the development of interventions that more fully empower women to make informed and values-consistent decisions, and to move towards favorable health outcomes.