Closing the Gap: Participatory Formative Evaluation to Reduce Cancer Screening Disparities among Patients with Limited English Proficiency.

Patients with limited English proficiency (LEP) have disproportionately lower rates of cancer screening than English-proficient patients. Given the multifactorial nature of screening disparities, strategies to improve screening rates must address barriers within and outside of the clinic setting. The objectives of this study were to understand local barriers from multiple stakeholder perspectives, to identify potential multilevel intervention approaches, and to mobilize community-engaged intervention decision making and planning. This participatory formative evaluation approach employed needs assessment and user engagement in order to enhance intervention usefulness and relevance. The study took place in several stages and involved clinic and community partners in a small metropolitan area of the Midwest USA. Interviews were conducted with LEP patients (n = 9) who had not completed three recommended screenings (breast, cervical, and colorectal), primary care providers (n = 5), medical interpreter (n = 5), and community members (n = 3). These highlighted multilevel barriers including limited patient understanding of preventive health, time and cost constraints, and variable roles of language interpreters. The literature was also reviewed to identify interventions used with similar populations. Findings from this review suggest that interventions are largely focused on single population groups or address single screening barriers. Finally, a community-academic summit (n = 48 participants) was held to review results and develop recommendations for community and clinic interventions. Findings from this study indicate that it is possible to engage a diverse group of stakeholders in strategies that are responsive to health care providers and patients, including LEP patients from heterogeneous backgrounds.

Returning genomic results in a Federally Qualified Health Center: the intersection of precision medicine and social determinants of health.

PURPOSE: This report describes the return of sequencing results to low-income Latino participants recruited through a Federally Qualified Health Center (FQHC). We describe challenges in returning research results secondary to social determinants of health and present lessons learned to guide future genomic medicine implementation studies in low-resource settings. METHODS: Five hundred Latino adults (76% women) consented to research sequencing for a predetermined panel of actionable genes. Providers and staff from the FQHC were engaged to align processes with the practice and a community advisory board grounded the project in the local community. RESULTS: A pathogenic/likely pathogenic variant was present in 10 participants (2%). Challenges in return of results included the time lag (582 ± 53 days) between enrollment and returning actionable results, difficulty reaching participants, missed appointments, low health literacy, lack of health insurance, and reconciling results with limited information on family history. Return of one actionable result was deferred due to acute emotional distress secondary to recent traumatic life events. CONCLUSION: The social determinants of health influence the implementation of genomic medicine in low-income populations in low-resource settings. Considering nonbiological factors that contribute to disparities will be necessary to better appreciate how genomic medicine may fit within the context of health equity.

A qualitative study of healthcare-related experiences of non-smoking women with lung cancer.

PURPOSE: Lung cancer in non-smoking women is a distinct entity, but few studies have examined these patients' healthcare-related experiences. METHODS: Women with lung cancer and with no smoking history underwent a face-to-face semi-structured, audio-recorded interview that was analyzed with a qualitative inductive approach. RESULTS: Twenty-three patients were interviewed, and three themes emerged. The first theme centered on a delay in cancer diagnosis. One patient described, "The whole initial diagnostic process just fills me with rage… I didn't actually get my Tarceva® until the last week in April." Second, the diagnosis of lung cancer seemed especially challenging in view of patients' non-smoking history and otherwise good health; these factors seem to have contributed to the diagnostic delay. One patient explained, "Well, I was just so adamant that I didn't like smoking… maybe if I had been a smoker, they [the healthcare providers] would've been more resourceful." Finally, the stigma of a smoking-induced malignancy was clearly articulated, "Yeah. Because it's a stigma, and I had read that, too -- people go, 'Well, it's your own damn fault because you were a smoker.'" CONCLUSIONS: Non-smoking women with lung cancer appear to endure a long trajectory from symptoms to cancer diagnosis to the initiation of cancer therapy. An awareness and acknowledgement of this long trajectory might help healthcare providers render more compassionate cancer care to these patients.

Assessing optimism and pessimism about genomic medicine: Development of a genomic orientation scale.

Efforts to characterize stakeholder attitudes about the implementation of genomic medicine would benefit from a validated instrument for measuring public views of the potential benefits and harms of genomic technologies, which would facilitate comparison across populations and clinical settings. We sought to develop a scale to evaluate attitudes about the future of genomic medicine. We developed a 21-item scale that examined the likelihood of various outcomes of genomic medicine. The scale was administered to participants in a genomic sequencing study. Exploratory factor analysis was conducted and bivariate correlations were calculated. The genomic orientation (GO) scale was completed by 2895 participants. A two-factor structure was identified, corresponding to an optimism subscale (16 items, α = 0.89) and a pessimism subscale (5 items, α = 0.63). Genomic optimism was positively associated with a perceived value of genetic test results, higher health literacy, and decreased decisional conflict about participation in a genomic research study. Genomic pessimism was associated with concerns about genetic testing, lower health literacy, and increased decisional conflict about the decision to participate in the study. The GO scale is a promising tool for measuring both positive and negative views regarding the future of genomic medicine and deserves further validation.

What occurs in the other 20% of cancer patients with chemotherapy-induced nausea and vomiting (CINV)? A single-institution qualitative study.

PURPOSE: Despite recent advances in prophylaxis and management, 20% of patients who receive moderately to severely emetogenic chemotherapy continue to experience nausea and vomiting. Relying on patients' own words, this study sought to capture and characterize the lived experience with chemotherapy-induced nausea and vomiting (CINV) for this important subgroup of patients. METHODS: Solid tumor patients with a history of poorly controlled CINV provided informed consent and participated in a semi-structured interview, which was audio-recorded and transcribed. After data saturation, enrollment ceased, and inductive, qualitative analytic methods were employed. RESULTS: The median age of the 20 enrolled patients was 56 years (range 27-83) with an equal gender split; half had gastrointestinal cancers. Two themes emerged. First, CINV is severe and multidimensional: "It's like shredding your muscles… It's doing it over and over again." This symptom complex has psychosocial implications: "Isolation is a big thing." Financial toxicity is also implicated: "I use [an antiemetic] when I feel like it is absolutely necessary because it is so expensive I cannot afford it anyway." The second theme is underreporting of symptoms. Patients seemed to accept N/V as part of treatment and were therefore less forthcoming: "God, if you're pumping poison in your system, you gotta expect some side effects." CONCLUSIONS: These vivid data should motivate investigators to continue conducting clinical trials CINV and should remind healthcare providers about the importance of patient education on the availability of therapy for breakthrough symptomatology.

Diabetes Mellitus Management Among Patients with Limited English Proficiency: A Systematic Review and Meta-Analysis.

BACKGROUND: Patients with limited English proficiency (LEP) and type 2 diabetes mellitus (T2DM) have several health disparities, including suboptimal patient-provider interactions, poorer glycemic control, and T2DM complications. Understanding existing interventions for improving T2DM outcomes in this population is critical for reducing disparities. METHODS: We performed a systematic review of randomized controlled trials (RCTs) and observational studies examining the effectiveness of interventions in improving T2DM outcomes among patients with LEP in North America. Quality was assessed using the Cochrane risk of bias tool for RCTs and the Newcastle-Ottawa Scale for non-RCT studies. Meta-analysis was conducted using the random-effects model. RESULTS: Fifty-four studies, 39 of which reported sufficient data for meta-analysis of glycemic control, were included. The interventions were associated with a statistically significant reduction in hemoglobin A1c (HbA1c) (weighted difference in means, -0.84% [95% CI, -0.97 to -0.71]) that was, however, very heterogeneous across studies (I2 = 95.9%). Heterogeneity was explained by study design (lower efficacy in RCTs than non-RCTs) and by intervention length and delivery mode (greater reduction in interventions lasting <6 months or delivered face-to-face); P < 0.05 for all three covariates. The interventions were also associated in most studies with improvement in knowledge, self-efficacy in diabetes management, quality of life, blood pressure, and low-density lipoprotein cholesterol. DISCUSSION: Multiple types of interventions are available for T2DM management in patients with LEP. Multicomponent interventions delivered face-to-face seem most effective for glycemic control. More research is needed to better understand other aspects of multicomponent interventions that are critical for improving important outcomes among patients with T2DM and LEP.

Comparison of medical service use and human papillomavirus vaccination rates among Somali and white/non-Hispanic girls.

OBJECTIVE: This study aimed to determine if there is a relationship between medical use patterns and human papillomavirus (HPV) vaccination rates among a previously studied population of Somali and white/non-Hispanic girls in Rochester, MN. MATERIALS AND METHODS: With the use of a previously identified group of Somali and white/non-Hispanic girls with known HPV vaccination status, the number, type, and age at provider visits were abstracted. Abstraction was blinded to vaccination status and ethnic designation. χ and Student t tests were performed for descriptive analysis of parametric data. For nonparametric data, Wilcoxon rank sum test was performed. RESULTS: Somali girls had fewer provider visits (median = 7, interquartile range [IQR] = 3-12.25) compared with white/non-Hispanic girls (median = 12, IQR = 6-18) (p < .001). Among those who completed the HPV vaccine series, Somali girls had more well-child visits (median = 2, IQR = 1-2) compared with the white/non-Hispanic group (median = 1, IQR = 1-2) (p = .028). There was no difference in the number of emergency department visits or inpatient hospitalization between groups. CONCLUSIONS: White/non-Hispanic girls had higher HPV vaccine completion rates and more provider visits. However, this increase in number of encounters is due to an increase in specialty visits. This is unlikely to account for the increase in HPV vaccination completion rates. Community-based research will likely provide greater insight into the cause(s) of reduced vaccine rates among Somali adolescent girls.

The feasibility and educational value of Hear My Voice, a chaplain-led spiritual life review process for patients with brain cancers and progressive neurologic conditions.

Research continues to establish the importance of spirituality for many persons with medical illnesses. This paper describes a pilot study titled, "Hear My Voice," designed to provide an opportunity for persons with progressive neurologic illnesses, including brain tumors and other neurodegenerative diseases, to review and discuss their spirituality with a board-certified chaplain, and to prepare a spiritual legacy document (SLD). First, we provide background information that underscores the importance of such a project for this patient population that is particularly vulnerable to cognitive impairment and communication difficulties. Second, we provide detailed methodology, including the semi-structured interview format used, the development of the SLD, and an overview of responses from participants and investigators. We also describe the quantitative and qualitative approaches to analysis taken with the aim of developing scientific validation in support of the Hear My Voice project.

Changes in U.S. Preventive Services Task Force recommendations: effect on mammography screening in Olmsted County, MN 2004-2013.

OBJECTIVE: We assessed changes in adherence to screening mammography recommendations with the introduction of the new U.S. Preventive Services Task Force (USPSTF) recommendations in 2009. METHODS: Using the Rochester Epidemiology Project data linkage system, we examined mammography screening from 2004 to 2013 in 31,377 women 40years of age and older residing in Olmsted County, MN before and after the 2009 change in recommendations. Chi-square was used to compare screening rates before and after changes in recommendations overall, by age group, and by baseline adherence. RESULTS: Among women 40 years and older, declines in screening were observed: 69% of the population was adherent in 2004-2005, 61% in 2006-2009 and 53% in 2010-2013. Absolute decreases in screening were observed from pre- to post-change for those ages 40-49 (4%), 50-74 (9%), and those 75+ (19%, all p<0.0001). Relative declines in screening rates were observed among women aged 70-74 years who were non-adherent at baseline and among women who were adherent at baseline, overall, and in each age group (all p<.001). CONCLUSIONS: Declines in screening, both absolute and relative, were most pronounced among women who were adherent at baseline. Research is needed to assess factors that influence screening in the context of evolving recommendations.

Perceived risk of cervical cancer among low-income women.

BACKGROUND: Risk perception is an important predictor of cancer prevention behaviors. We examined the perceived risk of cervical cancer among an ethnically diverse population of women of lower socioeconomic status. MATERIALS AND METHODS: Females attending a women's health clinic were recruited for a study addressing cervical cancer prevention. Survey questions evaluated lifetime perceived risk of cervical cancer (0%-100%), beliefs about the accuracy of the Pap test, and estimated incidence of abnormal Pap test results. Risk estimates for oneself were followed with an item seeking a brief, qualitative explanation of the risk estimate. RESULTS: Surveys were completed by 338 women. The mean (SD) age of respondents was 29.9 (8.6) years. Women self-identified as Hispanic/Latina (32%, n=107), White (34%, n=116), and African American (34%, n=115). Estimated perceived lifetime risk of getting cervical cancer ranged from 0% to 100% (59.2 [29.5]). Risk estimates were associated with perceived prevalence of abnormal results (r=0.24, p<.001) and perceptions regarding the accuracy of the Pap test (r=0.13, p<.05). On average, women estimated that nearly half of all women have ever had an abnormal result (49.2 [26.9]; n=335; range, 0%-100%), with African American women estimating a higher percentage compared to Hispanic/Latina and White women. Women who themselves experienced an abnormal Pap test result reported higher proportions of other women experiencing an abnormal result (t333=-3.67, p<.01). CONCLUSIONS: This study advances our understanding of misperception of risk and how women qualitatively view their risk of cervical cancer. The findings underscore areas for practitioners to enhance patient education efforts.

Primary care utilization and mental health diagnoses among adult patients requiring interpreters: a retrospective cohort study.

BACKGROUND: Patients requiring interpreters may utilize the health care system differently or more frequently than patients not requiring interpreters; those with mental health issues may be particularly difficult to diagnose. OBJECTIVE: To determine whether adult patients requiring interpreters exhibit different health care utilization patterns and rates of mental health diagnoses than their counterparts. DESIGN: Retrospective cohort study examining patient visits to primary care (PC), express care (EC), or the emergency department (ED) of a large group practice within 1 year. PATIENTS: Adult outpatients (n = 63,525) with at least one visit within the study interval and information regarding interpreter need. MAIN MEASURES: Mean visit counts, counts of mental disorders, and somatic symptom diagnoses between patients requiring interpreters (IS patients) and not requiring interpreters (non-IS patients). KEY RESULTS: IS patients (n = 1,566) had a higher mean number of visits overall (3.10 vs. 2.52), in PC (2.54 vs. 1.95), and in ED (0.53 vs. 0.44) than non-IS patients (all p < 0.01). IS patients had a lower mean number of visits in EC than non-IS patients (0.03 vs. 0.13; p < 0.01). Interpreter need remained a significant predictor of visit count in multivariate analyses including age, sex, insurance, and clinical complexity. A greater proportion of IS patients were high utilizers (10+ visits) than non-IS patients (3.6 % vs. 1.7 %; p < 0.01). IS patients had a lower frequency of mental health diagnoses (13.9 % vs. 16.7 %), but a higher frequency of diagnoses recognized as potential somatic symptoms including diseases of the nervous (29.3 % vs. 24.2 %), digestive (22.6 % vs. 14.5 %), and musculoskeletal systems (43.2 % vs. 34.5 %), and ill-defined conditions (61 % vs. 49.9 %), all p < 0.01. CONCLUSIONS: IS patients visited PC more often than their counterparts and were more often high utilizers of care. Two sources of high utilization, mental health diagnoses and somatic symptoms, differed appreciably between our populations and may be contributing factors.

Receptivity and preferences of pancreatic cancer family members for participating in lifestyle programs to reduce cancer risk.

BACKGROUND: Cancer is a shared family experience that might provide an opportunity for lifestyle change among at-risk family members. The purpose of this study was to assess receptivity and preferences for cancer risk reduction programs among at-risk family members with two or more relatives affected with pancreas cancer. METHODS: We surveyed 401 at-risk family members in an existing pancreatic cancer family registry. Participants completed a mailed survey which examined demographic, medical, and psychosocial correlates of willingness to participate in lifestyle cancer risk reduction programs. Multivariable generalized estimating equation approaches were used to model preferences. RESULTS: Overall, 85% (n = 342) of at-risk family members were receptive to lifestyle cancer risk reduction programs. Participant preferred programs focused on nutrition (36%, n = 116) and weight management (33%, n = 108), with Web/Internet (46%, n = 157) being the most preferred delivery channel. Most respondents preferred to participate in programs with their family or friends (74%, n = 182), rather than alone (25%, n = 85). In multivariable analysis, younger age (p = 0.008) and higher perceived likelihood of developing cancer (p = 0.03) were associated with willingness to participate in lifestyle programs. CONCLUSIONS: Family members of those with pancreatic cancer are receptive to cancer risk reduction programs focusing on nutrition and weight management delivered via the internet. Further research is indicated to determine how to best incorporate a family-based approach when designing lifestyle intervention programs.

Who is counseled to lose weight? Survey results and anthropometric data from 3,149 lower socioeconomic women.

Because obesity is a grave public health concern, this study examined the percentage of disadvantaged women who recalled ever having received weight loss advice from a healthcare provider and factors associated with such advice. This study was part of a 5-clinic, cervical cancer prevention trial. Patients not immediately post-partum completed a Spanish/English survey; height and weight were also obtained. Of the 3,149 respondents (response rate 83%), 2,138 (68%) were overweight or obese (body mass index (BMI) ≥ 25); 94% reported a household income of <$35,000/year; 69% were Hispanic; 10% non-Hispanic black; and 40% completed the survey in Spanish. Only one-third reported ever having been told to lose weight. Based on BMI, these rates were 15% in the 25-29.9 range (overweight); 34% within 30-34.9; 57% within 35-39.9; and 73% ≥ 40. In univariate analyses, among overweight women, diabetes or English-speaking was associated with weight loss advice. In multivariate analyses, being older, more educated, and diabetic were associated with such advice. 48% of non-Hispanic whites, 31% of non-Hispanic blacks, and 29% of Hispanic had a home scale. Among disadvantaged women, obesity alone does not determine who recalls weight loss advice. Language barriers and lack of a home scale merit further study to address obesity.

Breast Density Knowledge and Awareness Among Latinas in a Low-Resource Setting.

PURPOSE: Latinas in low-resource settings face additional barriers to understanding mammographic breast density (MBD) implications. The authors compared MBD awareness and knowledge in Latinas from a safety-net clinic in Arizona with a national sample. METHODS: Latinas 40 to 74 years of age were recruited within a safety-net clinic during screening mammography appointments from 2016 to 2019 (AZ cohort) and from a nationally representative online panel in 2017 (NS cohort). Surveys completed in either English or Spanish assessed awareness and knowledge of MBD. Chi-square tests and logistic regression were used for comparisons. RESULTS: The NS cohort (n = 152) was older, more educated, more likely to have undergone prior mammography, and more likely to prefer English compared with the AZ cohort (n = 1,327) (P ≤ .03 for all) The NS cohort was more likely to be aware of MBD (32.6% versus 20.7%). Of those aware, the NS cohort was more likely to understand MBD's effect on masking (67.8% versus 37.0%) and breast cancer risk (72.2% versus 32.6%) compared with the AZ cohort (P ≤ .001 for all). Adjusting for age, education, screening history, and language, MBD awareness was similar between the two cohorts (adjusted odds ratio [ORadj], 0.95; P = .83), but knowledge of MBD as a masking factor (ORadj, 2.8; P = .03) and risk factor (ORadj, 7.2; P < .001) remained higher in the NS cohort compared with the AZ cohort. CONCLUSIONS: Differences in MBD awareness, but not knowledge, between Latinas in a low-resource setting compared with a national sample could be explained by age, education, screening history, and language preference, underscoring the need for tailored approaches to MBD education among Latinas.

Passive smoke exposure and abnormal cervical cytology in a predominantly Hispanic population.

OBJECTIVE: We sought to evaluate the association between passive cigarette smoke exposure and cervical cytological abnormalities in a predominantly Hispanic sample. STUDY DESIGN: Data were collected as part of a larger, ongoing randomized clinical trial. Inclusion criteria were met by 4403 Hispanic (73%) and non-Hispanic (27%) women between 18-55 years of age (mean = 30.14 ± 8.7). Analysis of variance and multivariate logistic regression determined the association between passive smoke exposure and Pap abnormality. RESULTS: Passive smoke exposure was positively associated with having an abnormal Pap smear (odds ratio, 1.70; 95% confidence interval, 1.14-2.52) as was current active smoking (odds ratio 1.45; 95% confidence interval, 1.03-2.04). Neither effect was modified by ethnicity. Increasing hours per week of passive smoke exposure was associated with low-grade squamous intraepithelial lesion (P < .05). CONCLUSION: Passive smoke exposure is an important independent risk factor for cytological abnormalities in Hispanic and non-Hispanic women. This study adds to the growing body of evidence of the dangers of passive smoke exposure.

Association of body image dissatisfaction, behavioral responses for healthy eating, and cardiovascular health in African-American women with overweight or obesity: A preliminary study.

BACKGROUND: African-American (AA) women have the lowest prevalence of ideal categorizations of diet and body mass index (BMI), as defined by the American Heart Association (AHA) Life's Simple 7 (LS7) cardiovascular health (CVH) components compared to other racial/ethnic groups, regardless of sex/gender. There is limited research exploring the interplay of unique psychosocial influences on CVH such as body image dissatisfaction (BID) and behavioral responses for healthy eating among AA women with overweight or obesity. OBJECTIVE: This study aimed to assess the association of BID with behavioral responses for healthy eating and LS7 components. METHODS: A cross-sectional analysis of baseline data was conducted among 32 AA women with overweight or obesity from a larger, community-based participatory research study. Self-reported measures were used to assess BID and behavioral responses to healthy eating (diet self-regulation to reduce fat or caloric intake and motivation for healthy eating [intrinsic motivation and integrated regulation]) using previously validated instruments. The LS7 components (e.g., BMI, diet, etc.) and composite score were evaluated using the AHA LS7 metrics rubric. RESULTS: Women with no or lower BID had greater diet self-regulation to reduce fat or caloric intake (mean, 3.5 vs 3.0; P=.05), intrinsic motivation for healthy eating (mean, 5.3 vs 4.2; P=.01), and integrated regulation for healthy eating (mean, 5.3 vs 3.7; P=.002) than those with higher BID. These significant differences remained after adjustment for BMI. Women with higher BID had a higher proportion of BMI within the obesity range compared with those with no or lower BID (94.4% vs 57.1%, P=.03). BID was not significantly associated with other LS7 components or composite score. CONCLUSION: BID and other psychosocial influences for healthy eating are potential targets for culturally tailored lifestyle interventions among AA women.

The influence of cultural adaptation and sexual risk behaviors on cervical cytology in a Hispanic population.

OBJECTIVE: To determine whether the level of cultural adaptation (acculturation) of Hispanic women is associated with increased sexual risk behaviors and cervical cytological abnormalities. STUDY DESIGN: Hispanic women 18-55 years of age (mean, 30.5 ± 8.32 years) underwent routine Papanicoulaou testing and completed a comprehensive survey (n = 3149). Acculturation (cultural adaptation) was measured using the Short Acculturation Scale for Hispanics. Structural equation modeling was used to test a mediation model. RESULTS: Highly acculturated women engaged in a greater number of sexual risk behaviors and were more likely to have an abnormal Papanicoulaou test when compared to less acculturated Hispanic women (P < .001). CONCLUSION: Acculturation is related to sexual risk taking and abnormal cervical cytology. Determination of acculturation level as part of culturally competent health care will aid in tailoring patient communication and counseling on the prevention of cervical cancer among Hispanic women.

Patients' Perspectives and Advice on How to Discuss Sexual Orientation, Gender Identity, and Sexual Health in Oncology Clinics.

OBJECTIVE: This study sought to understand the patients' perspective of what contributes to an absence of discussions of sexual orientation (SO), gender identity (GI), and sexual health in cancer care. METHODS: Patients were recruited from oncology, gynecology, and a gender transition clinic to participate in semistructured interviews, which were analyzed with qualitative methods. RESULTS: A total of 25 patients were interviewed, shedding light on 2 themes. The first was that these conversations are important but infrequent. One patient explained, "…. we know people who have had sex changes…[they] would have appreciated that question." In response to whether sexual health was ever brought up, one patient responded, "No doctor ever has." Patients described unaddressed issues: "There have been times, you know, we've wondered if it was okay to make love." The second theme consisted of 4 pragmatic, patient-provided points to facilitate discussions: (1) implementation of a scale of 1 to 10 (with 10 being comfortable) to first gauge patients' comfort in talking about SO, GI, and sexual health; (2) having the health-care provider explore the topic again over-time; (3) making sure the health-care provider is comfortable, as such comfort appears to enhance the patient's comfort ("I have a doctor here, a female doctor, who just matter of fact will ask if I get erections and so on because of the medication she's giving me);" and (4) eliminating euphemisms (one patient stated, "I don't know what you mean by 'sexual health'."). CONCLUSION: Oncology health-care providers have a unique opportunity and responsibility to address SO, GI, and sexual health.

Breast Density Awareness, Knowledge, and Attitudes Among US Women: National Survey Results Across 5 Years.

PURPOSE: To assess changes in breast density (BD) awareness, knowledge, and attitudes among US women over a period of 5 years. METHODS: Using a probability-based web panel representative of the US population, we administered an identical BD survey in 2012 and 2017 to women aged 40 to 74 years. RESULTS: In 2017, 65.8% had heard of BD (versus 57.5% in 2012; P = .0002). BD awareness in both 2012 and 2017 was significantly associated with race, income, and education. Among women aware of BD in 2017, 76.5% had knowledge of BD's relationship to masking (versus 71.5% in 2012; P = .04); 65.5% had knowledge of BD's relationship to cancer risk (versus 58.5%; P = .009); and 47.3% had discussed BD with a provider (versus 43.1% in 2012; P = .13). After multivariable adjustment, residence in a state with BD legislation was associated in 2017 with knowledge of BD's relationship to risk but not to masking. Most women wanted to know their BD (62.5% in 2017 versus 59.8% in 2012; P = .46); this information was anticipated to cause anxiety in 44.8% (versus 44.9% in 2012; P = .96); confusion in 35.9% (versus 43.0%; P = .002); and feeling informed in 89.7% (versus 90.4%; P = .64). Over three-quarters supported federal BD legislation in both surveys. Response rate to the 2017 survey was 55% (1,502 of 2,730) versus 65% (1,506 of 2,311) in 2012. CONCLUSION: Although BD awareness has increased, important disparities persist. Knowledge of BD's impact on risk has increased; knowledge about masking and BD discussions with providers have not. Most women want to know their BD, would not feel anxious or confused as a result of knowing, and would feel empowered to make decisions. The federal BD notification legislation presents an opportunity to improve awareness and knowledge and encourage BD conversations with providers.