Racial discrimination among women seeking breast cancer care

Despite advances in prevention, early detection, and treatment, racial inequities in breast cancer persist. Black women experience a 40% higher breast cancer-specific mortality than White women^1,2. The reasons for this inequity are complex, involving tumor characteristics, social determinants of health, and treatment-related factors³. Among all the factors, discrimination can play an insidious role because it has the potential to corrode trust and negatively impact decision making, thereby affecting cancer outcomes⁴. In addition, discrimination may mediate genomic, epigenetic, and physiologic alterations and impact access, receipt, completion, and tolerability of treatment, all of which may contribute to disparities in breast cancer outcomes^5,6. Compelling research in recent years has clearly demonstrated the ongoing damage of structural, cultural and individual-level racism present across multiple facets of the healthcare system, including societal, institutional, and clinical treatment settings^7,8,9.

Previous studies have documented higher rates of perceived discrimination among Black women diagnosed with breast cancer compared to White women^10,11. However, details on the setting and type of discrimination are lacking, with limited information available on the experiences among those treated for cancer. Our research team administered a survey to a racially and ethnically diverse population of women who had undergone treatment for breast cancer in New York and Boston. As part of this study, we sought to understand experiences of discrimination within and outside of healthcare settings. We also examined how experiences with discrimination may impact treatment receipt.

Study overview and population

We invited adult women diagnosed with a history of stage I–III breast cancer during 2013–2017 to participate in a one-time interviewer-administered survey. Interviews were conducted during 2018–2020. The survey instrument included questions on demographics (including self-reported race and ethnicity), treatment decisions, treatment receipt, breast cancer knowledge, experiences with discrimination, and potential barriers to treatment receipt. We recruited a diverse population of non-Hispanic White (hereafter, White), non-Hispanic Black (hereafter, Black), and Hispanic participants. Participants had to understand and speak English or Spanish and had to receive some or all of their cancer care (at least 3 visits) at a participating center (Dana-Farber Cancer Institute, Boston Medical Center [both in Boston, MA] or Columbia University Irving Medical Center [New York, NY]). The Institutional Review Board of each participating center approved the study (protocol 17-612), the study conformed to the standards set forth in the Declaration of Helsinki, and all participants gave informed consent. Additional details of the study methodology have been previously published^12,13.

Survey instrument

The survey used for this analysis included questions about discrimination derived from the validated Everyday Discrimination Scale^14,15,16. To examine experiences in the health care setting, participants were asked to consider the same questions but instead, as related to their experiences within the health care setting. For all questions, participants characterized their experiences as occurring either “never,” “rarely,” “sometimes,” “often,” or “always.” For each component of potential adjuvant treatment, participants were asked about whether it was recommended to them and if they initiated it, including radiation, chemotherapy, hormonal therapy, and trastuzumab.

Statistical analysis

First, we compared patient characteristics by race and ethnicity using Chi square and Fisher’s exact tests. We then calculated the summary experience of discrimination scores separately for discrimination in everyday life and in the health care setting by summing responses to each item (scored 1 to 5 for ‘never’ to ‘always’). Within each race and ethnicity group, differences in discrimination scores between the everyday setting and the healthcare setting were compared through paired-sample t-tests. For both the everyday setting and the health care setting, discrimination scores were compared across race and ethnicity groups through one-factor analysis of variance followed by Tukey’s pairwise comparisons. Responses to individual items from the discrimination scales were dichotomized as “never/rarely” and “sometimes/often/always” and Chi-square testing was used to compare the percent responding ‘sometimes/often/always’ across race and ethnicity groups. Because non-response to questions was infrequent (n = 3 participants left some discrimination questions blank), these participants were excluded from the analysis. To test for reliability of the two discrimination measures, we performed Cronbach’s alpha testing for each discrimination scale. Finally, we used Chi-square testing to evaluate univariate associations of responses to the discrimination scales and treatment receipt. Of note, because race itself wasn’t associated with treatment receipt in prior analyses¹² we focused on discrimination for these potential associations.

Sociodemographics

Overall, 296 women, 178 (60%) White, 76 (26%) Black, 42 (14%) Hispanic, completed interviews. Details on response rates have been published previously¹². Table 1 displays summary patient characteristics. Most had hormone receptor-positive breast cancer and stage 0-III disease at diagnosis. Black and Hispanic (vs. White) women reported lower educational attainment, and Black women were younger than White women at the time of interview.

Summary scores

Table 2 shows the summary scores for everyday and heathcare settings by race and ethnicity. Within each race and ethnicity group, discrimination summary scores were significantly lower in the healthcare setting compared with everyday life (paired sample t-tests, p < 0.001 for White vs. Hispanic women, p < 0.002 for White vs. Black women). In the everyday life setting, discrimination scores were higher for Black (mean 20, range 10–43) compared to White women (mean 16 range 10–33; p < 0.001) and Hispanic women (mean 16 range 10–33; p < 0.001). There was no significant difference in mean everyday discrimination score for Hispanic vs. White women (p = 0.996). In the health care setting, mean discrimination scores for Black women (mean 15, range 10–44) were significantly higher than those for White women (mean 13, range 10–25, p = 0.008) but not significantly higher than Hispanic women (mean 13 range 10–21, p = 0.056). There were no significant differences in mean discrimination scores for Hispanic vs. White women in the healthcare setting (p = 0.985).

Everyday life

Individual survey question responses regarding discrimination in everyday life experiences and within the health care setting are displayed in Tables 3, 4, respectively. When compared to White women, Black women experienced significantly more discrimination in many areas. In the everyday setting, Black women experienced significantly more discrimination on 9 of the 10 items from the instrument. Further, Black women experienced significantly more discrimination than Hispanic women for 7 of the 10 items. In contrast, Hispanic women experienced significantly higher discrimination in the everyday setting than White women on only 1 of the 10 items from the instrument (‘being threatened/harassed’).

Health care setting

With regard to the health care setting, Black women still experienced more discrimination than White women on 6 of the 9 items from the instrument (‘treated with less courtesy’, ‘treated with less respect’, ‘people act as if they think you are not smart’, ‘people act as if they are afraid of you’, ‘people act as if they think you are dishonest’, and ‘people ignore you or act as if you are not there’). In the health care setting, Hispanic women reported higher discrimination than White women on only 1 item (‘treated with less courtesy’), and lower discrimination than White women on 1 item (‘people act as if they are better than you’). Cronbach coefficients for the Everyday Discrimination scale and the discrimination within health care scales were 0.89 and 0.87, respectively, indicating a high degree of reliability.

Univariate analysis

In univariate analyses of discrimination item responses and treatment receipt (Table 5), only one item in the everyday discrimination scale (people act as if they think you are dishonest) was significantly associated with treatment; participants reporting this item as sometimes/often/always being less likely to receive recommended treatments. With regard to responses to the discrimination within health care measures, responses of sometimes/often/always for four items (treated with less courtesy, treated with less respect, people act as if you are not smart, people act as if they think you are dishonest) were significantly associated with less treatment receipt (Table 5).

Within this cross-sectional survey of diverse breast cancer survivors, we report the stark difference in experiences of discrimination between NH White, Black, and Hispanic women treated for breast cancer in everyday life and the health care setting. To our knowledge, this is the first study to both confirm that Black women report discrimination significantly more often than other women and to detail the setting and situation where the discrimination is felt in the context of a cancer diagnosis. Our measures demonstrated a high degree of reliability for the experiences reported within and outside of health care. And, despite small sample sizes for those declining at least one component of cancer-directed therapy, we observed several significant associations for discrimination and treatment receipt. Our results add to the growing body of literature aimed at better understanding the prevalence and potential impact of discrimination, particularly in the health care, and more specifically, cancer care, setting.

Multiple publications have previously demonstrated strong evidence for the impact of structural racism on health, not only when systemic racism occurs within health care but also because of the substantial impact of factors such as neighborhood segregation and public policy^5,6,7,8. Less attention has been paid to the individual day-to-day experiences for patients with cancer and how this may contribute to health outcomes. Other investigators, such as Sutton et al., have reported a greater incidence of Black women experiencing discrimination in the health care setting compared to White women (47% vs 16% respectively) and a high incidence of lifetime discrimination (82% of NH Black women vs 19% of NH White women)^10,11. However, these previous reports have included women who are largely privately insured and college-educated, or participants in a single healthcare system^10,11. Our participants were less likely to have private insurance (63%) or a college degree (33.6%), and they were treated at three separate healthcare systems in two states. Thus, our findings may be more representative of the demographics for Black women with breast cancer.

Our data demonstrate that overall rates of self-reported discrimination in everyday life were significantly higher than in the health care setting and self-reported discrimination among Black women was significantly higher than white women in both everyday and health care settings. Everyday discrimination is a serious concern underscoring challenges that women of color experience in their day-to-day lives. Emerging research on cancer inequities has begun to rigorously investigate the multiple consequences of racism, discrimination, and the chronic stress experienced by the most vulnerable populations. The burgeoning scientific study of living amongst these racist and discriminatory conditions chronically can lead to worse health outcomes is a rapidly growing and important field of research. Discrimination has been associated with lower quality of life among breast cancer survivors¹¹. In addition, individual discrimination is associated with physiologic, behavioral and health care use responses that collectively adversely impact health outcomes⁹. Downstream negative consequences include but are not limited to medical mistrust, poor communication, delayed access to care, chronic inflammation, and allostatic load or weathering^6,9,17. As our societal awareness and understanding of these challenges expand, future interventions to alleviate, reverse and mitigate these cancer inequities is critical.

Our results also identify specific experiences of Black patients, which can be addressed with thoughtful interventions and changes in healthcare practices or protocols. For example, rates of reporting feeling ignored in the health care setting were twice as high for Black women than Hispanic women and four times higher than White women. In addition, Black women had higher rates of reporting being treated with less courtesy and less respect. These results can guide intentional changes within the health care setting to address these perceptions. Reinforcement of respect and courtesy can be a crucial first step and a collective priority.

Limitations of the study include the small sample sizes for some analyses and the focus on care in three systems only. Despite extensive efforts to recruit Hispanic women, only 5 enrolled patients in this study were Spanish-speaking, limiting an assessment of Hispanic women in the experience in discrimination. The study adapted the discrimination scale, which has not been validated in the healthcare setting. Further, patients who chose to participate in the study may be favorably predisposed to the healthcare system because they had engaged in cancer care at the participating center, potentially skewing the results.

Overall, this study contributes to the foundational work necessary to understand and alleviate discrimination experienced by Black women receiving treatment for breast cancer. An awareness of the frequency and scope of discrimination is an essential step to remedying the problem. Immediate efforts can focus on identifying and mitigating factors contributing to specific experiences of discrimination in the healthcare setting, including Black women feeling unseen and unheard, feeling treated with less courtesy and respect, and feeling as though people think they are dishonest or not smart.