Provider effects and racial inequities in breast cancer risk-management adoption: Findings from a community-based study of high-risk women

Abstract

Objectives:

We investigated the role of high-risk patients’ relationships with their provider (hereafter, “patient-provider relationships” (PPRs)) in risk-management decision making among women with a high risk of breast cancer (BC) and examined racial disparities in three healthcare provider (HCP)-related facilitators of BC risk-management awareness and adoption.

Methods:

Using a community-based online survey of 717 non-Hispanic Black and non-Hispanic white women with ≥ 20 % lifetime risk of BC, we assessed the effects of HCP-related facilitators, identified by our previous research, on BC screening uptake and awareness of preventive options using logistic regression.

Results:

All three HCP-related facilitators were associated with an increased likelihood of being concordant with screening recommendations and aware of preventive options. Black women were less likely to report having access to the facilitators, and they were less likely to be concordant with and aware of risk-management recommendations.

Conclusion:

Targeted health interventions focused on improving specialist access and risk-related expertise among generalists, particularly among Black women, could substantially improve equity in BC prevention and screening access, and ultimately in BC outcomes. Practice Implications: Providers should address BC risk pro-actively with their patients, particularly among those with hereditary risk, and work to establish trusting relationships with their patients.

1. Introduction

Breast cancer (BC) is the second leading cause of cancer death in women. According to the most recent available data, 272,454 women in the U.S. were diagnosed with BC (2021) and 42,111 died of BC (2022) [1]. Women with a family history of BC or a BRCA mutation can have substantially elevated risk of the disease [2–4]. Surveillance routines, preventive surgeries, and medications are available to dramatically reduce risk and enable early detection among high-risk women. Clinical guidelines specify screening routines appropriate for all high-risk women and risk-reduction options of which all high-risk women should be aware [5–8]. Nevertheless, screening uptake and awareness of risk-management options remain limited among high-risk women, and the reasons for this are not clear [7–19].

Despite lower incidence of BC among Black than White women, BC mortality is 41 % higher among Black women [20]. Although some proportion of this disparity can be attributed to more aggressive cancers, much of the difference is attributed to later stage diagnosis, which has been associated with reduced uptake of screening and preventive services [21–23]. Racial disparities in uptake of the screening and preventive services recommended for high-risk women have not been systematically investigated.

This study utilized data from a large, diverse community-based sample of high-risk women to explore the impact of women’s relationships with their healthcare providers (HCPs) on their BC risk-management behavior.

1.1. Background

In a series of previous studies using qualitative methods to explore a community-based sample of high-risk women, our team identified a staged pathway along which high-risk women adopt risk-management behavior and eight facilitators that help them advance along that pathway; details about the conceptual framework and risk-management adoption pathway developed through this work are available elsewhere [24,25]. Three of these facilitators are related to women’s relationships with HCPs (hereafter, patient-provider relationships (PPRs)); we focus on those here: the duration of a woman’s longest relationship with a primary care provider (PCP) or women’s health practitioner (WHP); whether she has ever discussed her BC risk with a PCP/WHP; and whether she has ever seen a specialist about her BC risk. We also found evidence of racial disparities in access to these facilitators [26–28].

Effective BC risk management hinges on a multifaceted approach, particularly for high-risk women. Enhanced screening techniques like breast MRI are available and women at elevated risk are recommended to begin screening at earlier ages than average-risk women [7,9]. Preventive interventions—like risk-reducing bilateral mastectomy (hereafter, preventive mastectomy), risk-reducing bilateral salpingo-oophorectomy (hereafter, preventive oophorectomy), and chemoprevention—are also available and are recommended for high-risk women [9]. National Comprehensive Cancer Network (NCCN) screening and prevention recommendations are specific to one’s risk level, highlighting the importance of receiving personalized BC risk assessment [7]. Prior studies have generally focused on one risk-management option at a time, instead of the overall risk-management picture of high-risk patients. These studies suggest that high-risk women underutilize recommended BC screening [18,19, 29] and preventive options [30–32], though the reasons for this un-derutilization remain unclear [18,26,27]. Few studies have considered the experiences of high-risk women who have not sought out healthcare related to their heightened risk. We aim to fill these gaps and explore all NCCN-recommended risk-management options for high-risk women using a community-based sample.

Limited literature exists on the role of HCP-related factors in the experiences of women with high BC risk specifically, but relevant prior studies have been done on the general population. Although BC prevention research has rarely focused on the duration of PPRs, studies have found that access to a regular provider significantly increases mammography utilization rates [33–35]. Related concepts include satisfaction with the PPR [36,37] and degree of communication [38,39], each of which has been associated with increased concordance with mammography screening guidelines in the general population. Discussing BC risk with a provider has been found to predict uptake and awareness of BC risk-management options among women at average risk [40,41] and BC survivors [42]. There is a growing body of research on the importance of having access to a specialist in BC prevention for women at elevated risk, primarily focused on the role of genetic counselors. Specialist access varies for a range of reasons, from regional availability of services to individual-level insurance coverage, transportation access, etc. [43]. Not having access to a specialist has been associated with reduced mammography utilization among women with a family history of BC [44] and involvement of genetic counselors has been linked to greater understanding of the risk of recurrence among BC survivors [45].

Research on racial disparities in access to HCP-related facilitators among high-risk women has been very limited, but studies have documented racial disparities in some relevant contexts. Black patients are less likely to have a PCP [46] and less likely to be satisfied with the level of patient-provider communication [47]. A study of BRCA-positive BC survivors found that Black women were 16 times less likely than White women to report having discussed their genetic testing results with a provider [48]. Racial disparities have been documented in specialist referral patterns [28,49–51], and in access to specialists among survivors of BC and other cancers [52–54]. These findings align with our qualitative research, which suggests specialist access may constitute a key point at which racial inequities manifest [26,27].

We explored the impact of high-risk women’s PPRs on BC risk management. Rather than comprising a strictly clinical sample, respondents encompass varying degrees, frequencies, and types of interaction with HCPs related to their BC risk, enabling us to investigate the consequences of these variations and the asymmetries experienced by Black women [55,56]. We examined three HCP-related facilitators that our prior qualitative research suggested are important: longer duration of PPR, having had a BC risk discussion, and having seen a specialist. We evaluated the hypothesized relationships among these factors and their effects on concordance with NCCN-recommendations for clinical breast exams (CBE), mammograms, and MRIs, and awareness of preventive options to reduce BC risk (preventive mastectomy, preventive oophorectomy, and chemoprevention; see Table 1).

Table 1.

Hypotheses.

Hypothesis 1	Women who have had longer relationships with their PCPs/WHPs are more likely to have had a discussion about BC risk with one of those providers.
Hypothesis 2	Women who have had longer relationships with their PCPs/WHPs are more likely to have seen a specialist about their BC risk.
Hypothesis 3	Women who have discussed BC risk with a PCP/WHP are more likely to have seen a specialist about their BC risk.
Hypothesis 4	Better access to HCP-related facilitators is associated with more risk-management behavior Women who have discussed BC risk with a PCP/WHP are more likely to be (a) concordant with BC screening guidelines for high-risk women and (b) aware of risk-reduction options. Women with longer PCP/WHP relationships are more likely to be (c) concordant with BC screening guidelines for high-risk women and (d) aware of risk-reduction options. Women with who have seen a specialist about their BC risk are more likely to be (e) concordant with BC screening guidelines for high-risk women and (f) aware of risk-reduction options.
Hypothesis 5	Black women have worse access to HCP-related facilitators: (5a) having a conversation about BC risk with a PCP/WHP, (5b) having longer-term relationships with PCPs/WHPs, (5c) seeing a specialist about BC risk.
Hypothesis 6	Black women exhibit less risk-management behavior, specifically: (6a) guideline-concordant screening, and (6b) awareness of risk- reduction options.
Hypothesis 7	Women who are aware that they have a BRCA mutation have better access to HCP-related facilitators: (7a) having a conversation about BC risk with a PCP/WHP, (7b) having longer-term relationships with PCPs/WHPs, (7c) seeing a specialist about BC risk.
Hypothesis 8	Women who are aware that they have a BRCA mutation engage in more risk-management behavior, specifically: (8a) guideline-concordant screening, and (8b) awareness of risk-reduction options.

2. Methods

2.1. Study sample

The Daughter Sister Mother Project (DSM) survey is a unique community-based survey of women who believed themselves to be at high risk for BC and passed through a simple screener indicating they were likely to be at objectively high risk (n = 1053); details of recruitment, sample characteristics, and survey methodology have been described elsewhere [55,56]. This paper utilizes the high-risk subsample, which is composed of women at objectively high risk, defined as ≥ 20 % lifetime risk according to one or more risk prediction models (Gail, IBIS, Claus) (n = 717), who were: (1) between 18 and 75 years old, (2) non-Hispanic white or non-Hispanic Black or African American, (3) and, had no prior history of cancer (other than non-melanoma skin cancer). Recruitment was limited to non-Hispanic white and non-Hispanic Black or African American women – both because the prior qualitative work generated detailed understanding of the concepts to be included in the survey only among these populations, and to specifically facilitate exploration of Black-white racial disparities in access to BC prevention and care within the resource limitations of the study. Future iterations of the DSM survey will include women of other racial and ethnic backgrounds. Participants provided informed consent; this study was approved by the Institutional Review Board at The Ohio State University.

2.2. HCP-related facilitators

To measure access to primary care, respondents were asked if they had received care from a PCP or a WHP. Since PCPs and WHPs both provide primary care to women [57], we combined them for this analysis and refer to them as PCP/WHP. All HCP-related facilitators were self-reported by participants. Among those who had received care from a PCP/WHP, we compared those who reported a PPR > 5 years with those who reported one ≤ 5 years. This threshold was determined through preliminary analyses. We compared women who had discussed BC risk with a PCP/WHP with those who had not. To measure access to BC healthcare specialists, we compared women who reported having seen a breast, cancer, or genetics specialist with those who had not.

2.3. Risk-management outcomes

Participants were considered “concordant” with NCCN recommendations for CBE, mammography, and MRI if they reported having received a particular screening modality within the last year, if recommended to do so by the NCCN according to one’s personalized risk score. Respondents below the youngest recommended age for a given screening were excluded from relevant analyses. Those who reported having a breast MRI in the last year were considered concordant with CBE, mammography, and MRI screening guidelines, as were those who had received a preventive mastectomy. We compared respondents who had heard of preventive mastectomy, preventive oophorectomy, and chemoprevention with those who had not; NCCN guidelines specify that all women at ≥ 20 % lifetime risk should have heard about these options.

2.4. Statistical analysis

We generated descriptive statistics and conducted bivariable logistic regression using Stata 17 [58]. Because item non-response was low in our survey, we employed complete case analysis. We examined bivariable relationships among the HCP-related facilitators and between each HCP-related facilitator and all six risk-management outcomes. We also explored bivariable associations between race and all facilitators and outcomes, and tested all potential interactions with race supported by the literature. We explored differences between women who had a known BRCA+ mutation and those who did not. Because we could not control for race by adding it to predictive models or with stratification due to sample size limitations, we conducted a sensitivity analysis comparing results from the whole sample to results from the subsample of White women. Our substantive conclusions were not altered, so we report results from the whole sample here.

3. Results

3.1. HCP-related facilitators (Hypotheses 1–3)

Almost all participants reported seeing a PCP/WHP at some point in their life (99 %) and 82 % of these participants had discussed their BC risk at least a little with at least one such provider (see Table 2). Among those who had seen a provider, 47 % reported a PPR of > 5 years with a PCP/WHP. Those with longer PPRs were over three times as likely to report having had a BC risk discussion with their provider than those with PPRs of ≤ 5 years (OR: 3.51, 95 % CI: 2.27–5.42, see Table 3). Longer PPRs and having had a BC risk discussion were associated with increased likelihood of having seen a specialist. Participants with PPRs of > 5 years were twice as likely to have seen a specialist (OR: 2.04, 95 % CI: 1.51–2.75) as those with shorter PPRs. Women who had a BC risk discussion were almost ten times as likely to have seen a specialist (OR: 9.88, 95 % CI: 5.54–17.61) as those who had not.

Table 2.

Demographics and sample descriptives (n = 717).

	Total %(n)	Non-Hispanic Black±	Non-Hispanic White±	Known BRCA mutation¥	No known BRCA mutation¥
HCP-related Facilitators
PPR with PCP/WHP > 5 yearsю	47.1 % (334)	40.6 % (99)	50.5 % (235)	54.9 % (78)	45.1 % (256)
Risk Discussion with PCP/WHP∞	81.7 % (581)	78 % (192)	83.7 % (389)	99.3 % (142)	77.3 % (439)
Seen Specialistα	46.4 % (332)	33.2 % (83)	53.4 % (249)	89.7 % (131)	35.3 % (201)
Screening Concordanceμ
Clinical Breast Exam	67.7 % (462)	59.9 % (145)	72.0 % (317)	93.4 % (127)	61.4 % (335)
Mammography	72.3 % (295)	58.2 % (78)	79.2 % (217)	90.8 % (108)	64.7 % (187)
Breast MRI	34.1 % (159)	17.0 % (26)	42.5 % (133)	76.1 % (108)	15.7 % (51)
Awareness of Preventive Options+
Preventive Mastectomy	84.1 % (601)	75.5 % (188)	88.6 % (413)	86.3 % (126)	83.5 % (475)
Preventive Oophorectomy	62.2 % (440)	47.2 % (116)	70.1 % (324)	89.7 % (130)	55.1 % (310)
Chemoprevention	39.3 % (278)	25.0 % (62)	47.1 % (216)	78.1 % (114)	29.2 % (164)
Race±
Non-Hispanic Black	35.0 % (251)	n/a	n/a	18.5 % (27)	39.2 % (224)
Non-Hispanic white	65.0 % (466)	n/a	n/a	81.5 % (119)	60.1 % (347)
BRCA Status¥
Known BRCA Mutation	20.4 % (146)	10.8 % (27)	25.5 % (119)	n/a	n/a
No Known BRCA Mutation	79.6 % (571)	89.2 % (224)	74.5 % (347)	n/a	n/a

^юParticipants indicated how long their longest relationship was with a PCP/WHP; 0 = “≤ 5 years”, 1 = “> 5 years”.

^∞Participants indicated whether they had ever discussed BC risk with a PCP/WHP; 0 = ”Never”, 1 = ”A little” or “A lot”.

^αParticipants indicated whether they had ever seen a specialist about their BC risk; 0 = ”Never”, 1 = ”At least once”.

^μParticipants who were recommended a given screening modality by NCCN guidelines according to their personalized risk score indicated whether they had undergone a given screening modality in the last year; 0 = ”No”, 1 = ”Yes”.

⁺Participants were given definitions of risk-reduction options high-risk women are recommended to be aware of by the NCCN and indicated whether they had ever heard of the option; 0 = ”No”, 1 = ”Yes”.

^±Participants indicated whether they were non-Hispanic Black or non-Hispanic white= ; 0 = ”Non-Hispanic white”, 1 = ”Non-Hispanic Black”.

^¥Participants indicated whether they had ever received genetic testing and learned they had a BRCA mutation; 0 = ”No”, 1 = ”Yes”.

Table 3:

Bivariable associations among HCP-related facilitators.

	PPR with PCP/WHP > 5 yearsю	Risk Discussion with PCP/WHP∞	Seen a specialistα
Risk Discussion with PCP/WHP∞	X	X	9.88*** (5.54, 17.6)
PPR with PCP/WHP > 5 yearsю	X	3.51*** (2.27, 5.42)	2.04*** (1.51, 2.75)
Race±	.668* (.488,.914)	.695† (.471, 1.03)	.433*** (.315,.596)
Known BRCA mutation¥	1.48* (1.02, 2.14)	41.7***(5.78, 301.2)	16.0***(9.15, 28.1)

Results are odds ratios (95 % confidence intervals in parentheses). Example interpretation: Black women were 2/3 as likely as White women to report having a PPR > 5 years.

^*p < 0.05.

^**p < 0.01.

^***p < 0.001.

^юParticipants indicated how long their longest relationship was with a PCP/WHP; 0 = “≤ 5 years”, 1 = “> 5 years”.

^∞Participants indicated whether they had ever discussed BC risk; 0 = ”Never”, 1 = ”A little” or “A lot”.

^αParticipants indicated whether they had ever seen a specialist about their BC risk; 0 = ”Never”, 1 = ”At least once”.

^±Participants indicated whether they were non-Hispanic Black or non-Hispanic White= ; 0 = ”Non-Hispanic White”, 1 = ”Non-Hispanic Black”

^¥Participants indicated whether they had ever received genetic testing and learned they had a BRCA mutation; 0 = ”No”, 1 = ”Yes”.

3.2. Risk-management outcomes (Hypothesis 4)

Having PPRs > 5 years, having had a BC risk conversation with a PCP/WHP, and having seen a specialist were all associated with increased likelihood of concordance with screening guidelines (see Table 4). Compared with those with PPRs ≤ 5 years, women who reported longer PPRs were over twice as likely to be concordant with CBE guidelines (OR: 2.17, 95 % CI: 1.55–3.02) and mammography guidelines (OR: 2.51, 95 % CI: 1.61–3.91; see Fig. 1 and Fig. 2). They were 1.38 times as likely to be MRI concordant, though this finding was not statistically significant (95 % CI: 0.93–2.05; see Fig. 3). Women who reported a BC risk conversation with a PCP/WHP were over four times as likely to be concordant with CBE guidelines (OR: 4.50, 95 % CI: 2.98–6.80), almost three times as likely to be concordant with mammogram guidelines (OR: 2.87, 95 % CI: 1.38–5.95) and over six times as likely to be concordant with MRI guidelines (OR: 6.42, 95 % CI: 2.26–18.2) as those who did not. Women who had seen a specialist were over three times as likely to be concordant with CBE (OR: 3.47, 95 % CI: 2.45–4.92) and mammogram guidelines (OR: 3.99, 95 % CI: 2.53–6.29), and over thirteen times as likely to be concordant with MRI guidelines (OR: 13.4, 95 % CI: 7.28–24.7).

Table 4:

Bivariable associations of HCP-related facilitators, race, and BRCA mutation with risk-management outcomes.

	Screening Concordanceμ			Awareness of Risk-Reduction Options+
	CBE	Mammogram	MRI	Mastectomy	Oophorectomy	Chemoprevention
PPR with PCP/WHP > 5yrsю	2.17*** (1.55, 3.02)	2.51*** (1.61, 3.91)	1.38 (.931, 2.05)	1.15 (.766, 1.73)	1.48* (1.09, 2.02)	1.94*** (1.43, 2.63)
Risk Discussion with PCP/WH∞	4.50*** (2.98, 6.80)	2.87** (1.38, 5.95)	6.42*** (2.26, 18.2)	1.84* (1.15, 2.95)	2.56*** (1.73, 3.78)	4.68*** (2.80, 7.83)
Seen a specialistα	3.47*** (2.45, 4.92)	3.99*** (2.53, 6.29)	13.4*** (7.28, 24.66)	1.88** (1.23, 2.86)	4.14*** (2.97, 5.79)	7.51*** (5.33, 10.57)
Race±	.580**	.366***	.277***	.396**	.380***	.375***
	(.417,.807)	(.233,.574)	(.172,.447)	(.263,.594)	(.276,.523)	(.267,.527)
Known BRCA mutation¥	7.38***	4.87***	17.0***	1.25	7.07***	8.62***
	(3.89, 14.0)	(2.61, 9.08)	(10.4, 27.7)	(.740, 2.10)	(4.04, 12.4)	(5.60, 13.3)

Results are odds ratios (95 %-confidence intervals in parentheses). Example interpretation: Black women were just over half as likely as White women to report having had CBE.

^*p < 0.05.

^**p < 0.01.

^***p < 0.001.

^юParticipants indicated how long their longest relationship was with a PCP/WHP; 0 = ”≤ 5 years”, 1”> 5 years”.

^∞Participants indicated whether they had ever discussed BC risk; 0 = ”Never”, 1 = ”A little” or “A lot”.

^αParticipants indicated whether they had ever seen a specialist about their BC risk; 0 = ”Never”, 1 = ”At least once”.

^μParticipants who were recommended a given screening modality by NCCN guidelines according to their personalized risk score indicated whether they had undergone a given screening modality in the last year; 0 = ”No”, 1 = ”Yes”.

⁺Participants were given definitions of risk-reduction options high-risk women are recommended to be aware of by the NCCN and indicated whether they had ever heard of the option; 0 = ”No”, 1 = ”Yes”.

^±Participants indicated whether they were non-Hispanic Black or non-Hispanic white= ; 0 = ”Non-Hispanic white”, 1 = ”Non-Hispanic Black”.

^¥Participants indicated whether they had ever received genetic testing and learned they had a BRCA mutation; 0 = ”No”, 1 = ”Yes”.

Fig. 1.

Percent Concordant with CBE Guidelines, by Facilitator Bar graph of percentage concordant with MRI guidelines by HCP-related facilitator: 76.5 % of those who had a PPR > 5 years, 74.1 % of those who had a BC risk conversation, and 81.4 % of those who had seen a specialist were concordant with CBE guidelines.

Fig. 2.

Percent Concordant with Mammography Guidelines, by Facilitator Bar graph of percentage concordant with mammography guidelines by HCP-related facilitator: 79.6 % of those who had a PPR > 5 years, 74.1 % of those who had a BC risk conversation, and 82.6 % of those who had seen a specialist were concordant with mammography guidelines.

Fig. 3.

Percent Concordant with MRI Guidelines, by Facilitator Bar graph of percentage concordant with MRI guidelines by HCP-related facilitator: 37.1 % of those who had a PPR > 5 years, 36.9 % of those who had a BC risk conversation, and 51 % of those who had seen a specialist were concordant with MRI guidelines.

All HCP-related facilitators were associated with increased likelihood of awareness of preventive options (see Table 4). Women with a PPR of > 5 years were 48% more likely to know about preventive oophorectomy (95 % CI: 1.09–2.02) and 94 % more likely to know about chemoprevention compared with women with shorter PPRs (95 % CI: 1.43–2.63). They were slightly more likely to be aware of preventive mastectomy, but this result was not statistically significant (95 % CI: 0.931–2.05). Women who discussed BC risk with a PCP/WHP were almost twice as likely to know about preventive mastectomy (OR: 1.84, 95 % CI: 1.15–2.95), over twice as likely to know about preventive oophorectomy (OR: 2.56, 95 % CI: 1.73–3.78), and almost five times as likely to know about chemoprevention (OR: 4.68, 95 % CI: 2.80–7.83) as those who had not. Women who had seen at least one specialist about their BC risk were almost twice as likely to know about preventive mastectomy (OR: 1.88, 95 % CI: 1.23–2.86), over four times as likely to know about preventive oophorectomy (OR: 4.14, 95 % CI: 2.97–5.79), and over seven times as likely to know about chemoprevention (OR: 7.51, 95 % CI: 5.33–10.57).

3.3. Racial disparities (Hypotheses 5–6)

Black women were significantly less likely than White women to report PPRs > 5 years or having seen a specialist (see Table 3). Compared to White women, Black women were approximately two thirds as likely to report having had a PPR > 5 years (OR: 0.67, 95 % CI: 0.49–0.91) and less than half as likely to report having seen a specialist (OR: 0.43, 95 % CI: 0.32–0.60). Black women were about three quarters as likely as White women to have had a BC risk discussion (OR: 0.70, 95 % CI: 0.47–1.03), but this estimate only reached marginal significance. Race moderated the relationship between duration of PPR and having seen a specialist (p < .05). Among Black women, the impact of reporting a PPR > 5 years was approximately two times that of the impact among White women (OR: 2.06, 95 % CI: 1.06–4.00).

Black women were significantly less likely than White women to be concordant with screening guidelines and to be aware of risk-reduction options (see Table 4). Black respondents were two-thirds as likely as white respondents to be concordant with CBE guidelines (OR: 0.61, 95 % CI: 0.44–0.85), less than half as likely to be concordant with mammogram guidelines (OR: 0.37, 95 % CI: 0.23–0.57), and less than one-third as likely to be concordant with MRI guidelines (OR: 0.28, 95 % CI: 0.17–0.45). Compared to White women, Black women were less than half as likely to know about preventive mastectomy (OR: 0.40, 95: CI: 0.26–0.59), preventive oophorectomy (OR: 0.38, 95 % CI: 0.28–0.52), and chemoprevention (OR: 0.38, 95 % CI: 0.27–0.53). Race moderated the relationship between having seen a specialist and being aware of preventive oophorectomies. The impact of having seen a specialist was less than one-third the size among Black women as among White women (OR: 0.27, 95 % CI: 0.14–0.55).

3.4. Role of known BRCA mutation (Hypotheses 7–8)

There were limited substantive differences between the whole sample and the white subsample. We present results from the whole sample here, noting instances where results deviated among the white sample. Women who knew they had a BRCA mutation were more likely to report access to HCP-related facilitators than women who did not have—or did not know they had—a BRCA mutation (see Table 3). Compared with high-risk women without a known BRCA mutation, women with a known BRCA mutation were approximately 50 % more likely to report a PPR greater than five years (OR: 1.48, 95 % CI: 1.02–2.14), about 41 times as likely to report having discussed BC risk with a provider (OR: 41.7, 95 % CI: 5.78–301.2), and 16 times as likely to report having seen a specialist (OR: 16.0, 95 % CI: 9.15–28.1). Among the white subsample, the association between having a known BRCA mutation and greater duration of generalist PPR was no longer significant (95 % CI: 0.80–1.85). Awareness of a BRCA mutation was also associated with greater odds of screening concordance and awareness of risk management options (see Table 4). Women with a known BRCA mutation were 7.38 times as likely to be concordant with CBE guidelines (95 % CI: 3.89–14.0), 4.87 times as likely to be concordant with mammography screening guidelines (95 % CI: 2.61–9.08), and 17.0 times as likely to be MRI concordant (95 % CI: 10.4–27.7) compared with women who did not have a known BRCA mutation. Among the white subsample, the impact of having a known BRCA mutation on the likelihood of being aware of preventive mastectomy was no longer significant (95 % CI: 0.61–2.36).

4. Discussion

To make fully empowered risk-management decisions appropriate to their risk, women with high BC risk must be aware of relevant screening guidelines and risk-reduction options. Our results confirm the importance of three HCP-related facilitators in helping women understand their options so they can move along the pathway from awareness of risk to adoption of risk-management. Prior studies on risk management among high-risk women have generally focused on women who were already receiving healthcare related to their BC risk, limiting researchers’ ability to determine the significance of seeing a specialist and receiving risk-specific care. With 95 % of our participants recruited from nonclinical sources [52], we were able to explore the role of receiving specialist care among women who may never have received care for their BC risk. We found it played an important role in concordance and awareness, though the majority had not received specialist care for their BC risk.

Having a PPR with a PCP/WHP of > 5 years, having had a BC risk conversation with such a provider, and having seen a specialist were all separately associated with an increased likelihood that women were concordant with personalized screening recommendations and aware of relevant risk-reduction options. Though most high-risk women in this study had discussed BC risk with a PCP/WHP; women were more likely to have discussed BC risk if they reported PPRs > 5 years. This insight aligns with evidence that having access to a regular provider for primary care is associated with greater concordance with BC screening guidelines among the general population [33–36,59] and among BC survivors [60]. Longer PPRs may indicate greater satisfaction with the PPR and enhanced communication and interaction between patient and provider, which are associated with a greater likelihood of being BC screening concordant in the general population [36–39] and among BC survivors [42].

Similarly, having had a BC risk conversation with at least one PCP/ WHP was significantly associated with having seen a specialist, aligning with prior research that found receiving a provider recommendation for screening was associated with greater odds of concordance with BC screening guidelines among the general population [29,59,61–63]. Further, we found that having a BC risk conversation facilitated concordance with and awareness of all NCCN-recommended screening and preventive options. Conversations about risk may provide space for individualized BC risk education and patient questions, leading to an improved understanding of one’s own risk level and available risk-reduction options. Indeed, a study of BC survivors found that degree of patient-provider communication predicted uptake of risk-management behaviors [41]. In turn, having access to a specialist was strongly associated with greater BC screening concordance and awareness of preventive options. Specialist providers, like genetic counselors, oncologists, and breast surgeons, can be important for learning about personalized risk, accessing enhanced screening, and interpreting genetic results [44,45,64]. Our findings extend this prior research from clinical samples of high-risk women to high-risk women who may have never interacted with the healthcare system about their BC risk.

Black women were significantly less likely to be concordant with BC screening guidelines and to know about BC risk-reduction options than their white counterparts, likely due at least in part to dynamics related to women’s PPRs. Indeed, we found that Black women were less likely to have discussed BC risk with a provider or seen a specialist, and they reported shorter relationships with their providers. These findings align with evidence that clinical samples of high-risk Black women experience racial disparities in access to genetic testing and counseling [48,65] and are less likely to receive provider referrals to a cancer specialist [54]. The impact of longer duration of PPR on the likelihood of having seen a specialist was twice as large for Black women as it was for White women, suggesting that the PPR itself may play a greater role in risk-management adoption among Black women. Longer duration of PPR may help Black women overcome systemic racial disparities, such as in access to BC risk information, that impact their ability to manage a heightened level of BC risk.

We also found that the impact of having seen a specialist on awareness of preventive oophorectomy as a preventive option was weaker among Black women than among White women, suggesting that Black women may still experience unique barriers to accessing the full benefit of seeing a BC specialist. Research that has documented racial disparities across the BC care continuum and among people with other cancer diagnoses helps contextualize the disparate impact of having seen a specialist on concordance and awareness rates. There is evidence that providers engage in patient education less frequently with their Black cancer patients, and Black cancer patients are less satisfied with patient-provider communication [66–68]. It is possible that implicit biases in provider behavior toward Black patients are partially responsible for the muted impact of seeing a BC specialist among Black women in our study.

Having a known BRCA mutation was associated with substantially higher odds of having access to HCP-related facilitators, being concordant with relevant screening guidelines, and being aware of preventive options. It is unsurprising that women with a known BRCA mutation were more likely to report access to HCP-related facilitators, since having had a BC risk conversation and seeing a specialist are often antecedent to learning about one’s heightened BC risk. Our findings suggest White women had a higher baseline knowledge about their personal BC risk and BC risk-management recommendations, as evidenced by the reduced impacts of having longer PPRs and of having a known BRCA mutation among White women. Overall, these data reflect that learning about a BRCA mutation is a critical point at which some high-risk women learn about their options and personalized screening recommendations. Further, they highlight the importance of including community samples of women without a known BRCA mutation in BC education and outreach efforts.

The risk-management adoption pathway documented by our qualitative research led us to assume that BC risk conversations are needed for women to fully understand their risk-management and prevention options. Our data were cross-sectional, so it is possible that some women in our study were aware of screening and prevention recommendations before discussing BC risk with their PCP/WHP or seeing a specialist. Further longitudinal studies are warranted to confirm the extent to which these HCP-related facilitators act as causal mechanisms leading to enhanced concordance with and awareness of risk management recommendations. While we found evidence that women with a known BRCA mutation generally had greater access to HCP-related facilitators, and greater odds of concordance with and awareness of risk management recommendations, we were unable to fully explore the interaction between BRCA mutation status and race due to sample size restrictions. Future research should further explore risk-management decision making among high-risk women who do not have a known BRCA mutation, as the experiences of these women have been under-researched. The experiences of non-White people, potential mechanisms through which racial disparities persist, and socioeconomic disparities between regions should also be explored.

4.1. Practice implications

Our findings emphasize the importance of health information and healthcare access and point to the critical role of clinicians—both PCPs/ WHPs and specialists—in empowering high-risk women to take control of managing their own BC risk. Our findings emphasize the need for PCPs/WHPs to develop long-term, trust-based relationships with their patients to facilitate effective risk communication. PCPs/WHPs should prioritize reviewing family history, proactively discuss BC risk at an early age, educate patients on relevant screening and preventive options, and provide referrals to screening and specialist care when appropriate. Interventions are needed to improve systematic access to risk-related information and healthcare for high-risk women. Given historical and ongoing factors that contribute to mistrust between Black patients and providers, such as the legacy of unethical research practices [69,70], underrepresentation of Black clinicians [71,72], and experiences of bias in care delivery [73,74], provider training on cultural humility and effective communication strategies, particularly as they relate to interacting with women of diverse races and ethnicities, is needed to enhance PPRs and ensure that all high-risk women receive equitable care. This suggests that investing in longitudinal care models, culturally competent care teams, and patient navigation may be critical strategies to foster trust and improve screening uptake over time.

5. Conclusions

There are a variety of BC screening modalities and preventive options available for women at high risk, but not all women are aware of or utilize these services. This study confirms our previous qualitative work that suggested longer duration of PPR, having had a BC risk discussion, and having seen a specialist facilitate greater screening concordance and awareness of preventive options. Importantly, we found that Black women were significantly less likely to report access to HCP-related facilitators, concordance with personalized screening recommendations, or awareness of relevant risk-reduction options. Providers—both PCPs/WHPs and specialists—play an important role in facilitating high-risk women’s awareness and utilization of risk-management options and can therefore make a crucial impact in helping women advance along the pathway from awareness of risk to adoption of a risk management option(s).

Glossary

Risk-reducing bilateral mastectomy

Surgery to reduce breast cancer risk involving the removal of both breasts. This procedure reduces breast cancer risk in women by at least 90 %, though it does not completely remove risk. Mastectomy may be total, in which case the nipple and areola are removed, or nipple-sparing, where nipple and areola are preserved

Risk-reducing bilateral salpingo-oophorectomy

Surgery to reduce ovarian cancer risk involving removal of the fallopian tubes and ovaries, which reduces ovarian cancer risk by 70 % or more and may also reduce breast cancer risk. In some cases only the ovaries or only the fallopian tubes may be removed

Chemoprevention

The use of pharmaceuticals to lower a high-risk person’s risk of developing breast or other cancer. Tamoxifen and Raloxifene are two common drugs used to reduce breast cancer risk

BRCA mutation

BRCA1 and BRCA2 are tumor suppressor genes. Having a mutation in BRCA1 or BRCA2 significantly increases the likelihood of developing breast and ovarian cancer, increasing lifetime risk from 12 % for women with average risk to up to 80 % or more.

Data Sharing

De-identified data used in this study are available upon request from the senior author (TJP).