Medical Mistrust and Self-efficacy Influence Black Women’s Level of Engagement in BRCA1/2 Genetic Counseling and Testing

Abstract

Clinical evidence supports the value of BRCA1/2 genetic counseling and testing (GC/T) for managing hereditary breast and ovarian cancer risk; however, BRCA1/2 GC/T is underutilized among Black women and reasons for low use remain elusive. We examined the potential influence of socio-cultural factors (medical mistrust, concerns about genetic discrimination) on GC/T engagement in a sample of 100 Black women at increased risk for carrying a BRCA1/2 mutation. Eligible participants fell into one of three groups: 1) healthy women with ≥ 1 first-degree relative (FDR) affected by breast and/or ovarian cancer, 2) women diagnosed with breast cancer at age ≤ 50, and 3) women diagnosed with breast and/or ovarian cancer at age ≥ 50 with either one FDR or two second degree relatives with breast and/or ovarian cancer. Participants were recruited from clinical and community settings and completed a semi-structured interview. Study variable relationships were examined using bivariate tests and multivariate regression analysis. Forty-three percent of participants were aware of GC/T services. Yet referral and receipt of GC/T services in this sample was low (28%). After accounting for sociodemographic factors, women with higher self-efficacy had greater GC/T engagement (B = 0.37, p < .001), while those with higher medical mistrust had lower GC/T engagement (B = −0.26, p <. 01). Interventions targeted towards increasing provider referrals may facilitate higher levels of engagement in GC/T services. Individual interventions that enhance women’s personal confidence in obtaining GC/T may also be useful in promoting GC/T engagement.

Introduction

Breast cancer is the leading cancer diagnosed in women.^1–3 It is believed to originate from both genetic and environmental risk determinants, ultimately accumulating into mutations in the DNA.⁴ Risk for breast cancer increases dramatically with age, with upwards of 90%–95% of breast cancers being sporadic and the remaining 5%–10% being heritable.^3,5 Hereditary breast cancer is attributable to mutations in the BRCA1 and BRCA2 (BRCA1/2) genes, with up to an 85% lifetime risk.⁶

Despite knowledge about hereditary breast-ovarian cancer syndrome and the integration of BRCA1/2 GC/T into clinical practice, significant disparities exist between Black and White women in breast cancer diagnosis, outcomes, and utilization of GC/T services.⁷ Compared to Whites, Black women are more likely to be diagnosed with breast cancer at a younger age and to die from this disease.¹ Furthermore, the prevalence of BRCA1/2 mutations in Black women ranges from 12% to 21%, making the benefits of GC/T to this group clear and compelling.^8,9

GC/T is a critical part of population management of BRCA1/2 risk, yet Black women are less likely to participate in GC/T compared to Whites.^7,10–15 This disparity remains even after accounting for the actual risk of carrying a mutation, risk perception, worry about breast cancer, and patient-provider interactions.⁷ Factors (e.g., perceived risk) included in most behaviorally-based conceptual models may not adequately explain help-seeking barriers among Black women.

The framework proposed by Freeman and Chu^16,17 suggests that socio-cultural barriers related to poverty (e.g., limited or no access to services) and culture (e.g., shared attitudes/beliefs) are potential explanations of racial disparities. Applying this framework, we operationalized socio-cultural factors in a three-fold manner: socioeconomic status, mistrust of the medical system, and concern for genetic discrimination. The purpose of this investigation was to identify socio-cultural influences associated with BRCA1/2 GC/T engagement in Black women. We hypothesized that higher medical mistrust and concerns about genetic discrimination would be inversely associated with GC/T engagement when demographic factors were controlled.

Methods

Participants and Setting

Participants were 100 Black women who were either: 1) unaffected by breast or ovarian cancer (n = 50) with at least one first-degree relative (FDR) affected by breast or ovarian cancer (e.g., mother, sister) or 2) affected by breast cancer and were either diagnosed at age ≤ 50 years (regardless of their family history) or diagnosed at age > 50 years with at least one FDR or two second-degree relatives (e.g., aunt, grandmother) with breast and/or ovarian cancer. Additionally, to be eligible for engagement women must have been at least 21 years of age and able to read/understand English.

This research was conducted at an NCI comprehensive cancer center in the mid-Atlantic region of the United States. The center provides a full range of breast care services to patients, including screening, diagnostic imaging, cancer education and risk assessment, and clinical care. It also includes a community-based site, which offers clinical breast exams and mammograms at no or low-cost to eligible women.

Recruitment and Enrollment

After receiving approval by a local Institutional Review Board, women were recruited through community outreach efforts and from the clinical services at the aforementioned center. Seventy-nine percent of participants responded to advertisements sent to local support groups, web-based recruitment and/or self-referred to the study. Women from the clinical center (n=21) were those that had completed a family history assessment registration form and had agreed to be contacted regarding research studies. Participants received a $25 gift card.

Measures

The multidimensional survey was developed by the study authors based on formative pilot work and the extant literature. Where available, reliable and valid self-report behavior rating scales were adopted or adapted for this purpose.

Demographic characteristics were age, residential address, educational level, and marital, employment, and health insurance statuses. Census tract household income was estimated using geo-coding based on women’s addresses.¹⁸

Clinical characteristics included whether or not participants had been previously diagnosed with breast cancer, and whether they had a FDR who had been diagnosed with breast cancer.

Medical Mistrust was assessed using the 7-item Medical Mistrust Index (MMI).¹⁹

The MMI has been demonstrated to be psychometrically sound, with high test-retest reliability, strong construct validity, and acceptable internal consistency (Cronbach’s α ≥ 0.70).¹⁹ MMI items were preceded by the following prompt: “Thinking about the relationship between various racial/ethnic groups and the American medical system…” Items assessed women’s level of agreement on a 5- point Likert-type response scale ranging from “Strongly agree” to “Strongly disagree.” An overall score was created by summing items together; higher values reflect greater medical mistrust (range 7–35). In our sample, the MMI evidenced adequate internal consistency (Cronbach’s α = 0.69, M item-total correlation = 0.40).

GINA Law Confidence

After providing women with a description of the Genetic Information Non-Discrimination Act of 2008²⁰ (GINA Law) we assessed their confidence that the GINA Law would adequately protect against genetic-based discrimination using 3-items with acceptable reliability (Cronbach’s α = 0.76, M item-total correlation = 0.60). Responses were along a 5-point Likert-type scale (“Strongly agree” to “Strongly disagree”). A summary score was created; higher values reflect greater GINA Law confidence (range 3–15).

Self-Efficacy in obtaining GC/T was assessed using a 3-item scale developed for this research (Cronbach’s α = 0.75, M item-total correlation = 0.58). Items examined participants’ self-confidence that they would know how to locate GC/T services, how to pay for those services, and how to act on information learned as a result of GC/T. All responses were on a 5-point Likert-type scale. The total self-efficacy score was the items’ sum (range = 3–15), with higher values indicating greater GC/T self-efficacy.

GC/T Engagement

The dependent variable was derived from a scale with six Yes/No items assessing women’s level of BRCA1/2 GC/T engagement. The first three items examined women’s awareness, referral, and engagement in genetic counseling for BRCA1/2 (Kuder-Richardson 20 = 0.79): the remaining three items assessed women’s awareness, referral, and engagement in genetic testing for BRCA1/2 (Kuder-Richardson 20 = 0.81). Based on participants’ responses, we created a summary score to indicate women’s overall level of GC/T engagement with values of 0 (unaware of BRCA1/2 GC/T), 1 (aware of GC/T, but had not received a referral), or 2 (received a referral for GC/T or participated in GC/T). Women were assigned the highest possible value based on their responses to scale items.

Statistical Analysis

Analyses were conducted using SAS 9.2 (SAS Institute, Inc., Cary, NC). Bivariate statistical tests (i.e., Pearson’s r correlations, t tests) examined the relationships between demographic, clinical, and socio-cultural factors and engagement in GC/T. A series of linear regression models were then created where variables associated with GC/T engagement in bivariate analyses (p < 0.10) were regressed onto the GC/T engagement variable in three sequential blocks. In the series of models, demographic characteristics were regressed first, followed by socio-cultural variables: interactions were explored in final models. We evaluated whether each block of predictors explained significantly more variance in the outcome variable using the F test for change in the overall model R squared.²¹

Results

Characteristics of the study sample are displayed in Table 1. The sample consisted of Black women, a majority of whom had some college education (82%), were employed full-time (73%), and had health insurance (92%). In total, 44% had a FDR (e.g., mother, sister) who had previously been diagnosed with breast cancer: 50% of women had also been diagnosed with breast cancer themselves. Overall study participants revealed moderate levels of self-efficacy for obtaining GC/T services (M=10.7) and levels of confidence in the GINA law protections (M=10.2). Regarding GC/T engagement, 29% of women were unaware, 43% were aware but not referred to GC/T, and 28% either received a referral and/or GC/T services.

Table 1.

Sample Characteristics

	Study Sample (n = 100)
Demographic Characteristics	m	sd	n	%
Age	44.9	11.5
Education a
≤ High School			17	17.0
Any College			56	56.0
> College			26	26.0
Marital Status
Married			41	41.0
Divorced/Separated/Other			15	15.0
Single/Widowed			44	44.0
Employment
Full Time Employed			73	73.0
Other			27	27.0
Household Income	$70,077	$31,597
Health Insuranceb
No Insurance			7	7.0
Any Insurance			92	92.0
Clinical Characteristics
FDR w/Breast/Ovarian Cancer			44	44.0
Breast/Ovarian Diagnosis			50	50.0
Psychosocial Factors
GC/T Self-Efficacy	10.2	2.9
Medical Mistrust	7.0	1.5
Gina Law Confidence	10.7	2.7
GC/T Engagement	0.99	0.76
Not aware of GC/T			29	29.0
Aware, but no referral/services			43	43.0
Referral and/or services			28	28.0

^aOne participant was missing data on education

^bOne participant was missing data on insurance

As shown in Table 2, greater GC/T engagement was associated (p < 0.10) with older age, greater educational attainment, higher household income, greater GC/T self-efficacy, and less medial mistrust. Based on the bivariate analyses, linear regression models were created to examine potential influences on GC/T engagement (Table 3). Greater GC/T engagement was predicted in the first model by educational attainment (B = −0.21, p < 0.05). Adding self-efficacy in the second model significantly increased the amount of variance explained (F_1,92 = 16.2, p < .001), and after adjusting for the effects of age, educational attainment, and household income, higher self-efficacy was associated with greater GC/T engagement (B = 0.36, p < .001). Adding medical mistrust to the third model also significantly increased the amount of variance explained (F_1,91 = 8.93, p <.01), and model three suggests that, after accounting for sociodemographic characteristics and self-efficacy (B = 0.37, p < 0.001), greater medical mistrust was associated with significantly less engagement in GC/T (B = −0.26, p <.01). No significant interaction was detected between self-efficacy and medical mistrust, suggesting these are not interdependent effects.

Table 2.

Bivariate Correlations with Level of Genetic Counseling and Testing Engagement

	GC/T Engagement
Demographic Characteristics	R	M	sd	p-value
Age	.18			.066
Education a				.065
≤ High School		.65	.79
Any College		1.0	.77
> College		1.2	.63
Marital Status				.218
Married		1.1	.74
Divorced/Separated/Other		1.1	.83
Single/Widowed		.84	.75
Employment				.937
Full Time Employed		1.0	.83
Other		.99	.74
Household Income	.19			.058
Health Insuranceb				.302
No Insurance		.77	.49
Any Insurance		1.0	.77
Psychosocial Factors
Self-Efficacy	.37			<. 001
Medical Mistrust	−.27			.003
Gina Law Confidence	.03			.739

Table 3.

Predictors of GC/T Engagement among Black Women (Standardized Coefficients)

	Model 1	Model 2	Model 3
Demographics
Age	0.19*	0.15	0.13
Education
≤ High School Education	−0.21*	−0.24*	−0.22*
> High School Education	Reference	Reference	Reference
Household Income	0.12	0.08	0.09
Self-Efficacy	--	0.36***	0.37***
Medical Mistrust	--	--	−0.26**
Model F Statistic	F2,99 = 3.6*	F4,94 = 6.8***	F5,91 = 7.9***
Adjusted R2	0.07	0.19	0.26
Δ R2F Statistic	--	F1,92 = 16.2***	F1,91 = 8.93**

^*p< .05

^**p< .01

^***p < .001

Discussion

Results of this cross-sectional study of Black women at moderate to high risk for carrying a BRCA1/2 mutation showed that while 43% of the sample was aware of GC/T, there was a low rate of referral and/or receipt of GC/T (28%). Because Black women are more likely to have early-onset breast cancer, GC/T may be beneficial for them to detect early-onset hereditary cancer and engage in preventive interventions.²² Samphao and colleagues found that many women under 40 years of age had substantial diagnosis delays were at high risk for hereditary breast cancer and suggest that delays may be in part attributed to underuse of genetic testing.²³ Ensuring access to GC/T is a high priority of hereditary breast cancer research and practice.²⁴ Our findings confirm that Black women’s awareness of GC/T may not translate into actual GC/T engagement.²⁵

This study expands the current knowledge regarding GC/T engagement in Black women in several ways. We provide empirical data regarding the influence of medical mistrust on women’s GC/T participation. While mistrust has been associated with general healthcare utilization^19,26, there are few studies that have empirically examined medical mistrust in cancer settings ^13,14. To our knowledge, none have specifically examined the impact of mistrust on Black women’s level of participation in GC/T. Further research is needed to examine whether mistrust explains some of the ethnic disparities in GC/T uptake and to identify interventions aimed to increase trust.

This study also contributes to the understanding of Black women’s self-efficacy in obtaining GC/T services with a novel measure that demonstrated good reliability (α=.75). Moreover, we also expand research that has measured physicians’ awareness and knowledge regarding GINA to Black women’s confidence in GINA protections against genetic-based discrimination. Measures of self-efficacy and GINA law confidence were both developed specifically for this study may be useful in future GC/T research. Taken together, the results of our study make novel contributions of our understanding of potential targets for future research and interventions to improve GC/T among Black women, and advance the measurement methodological aspects of this research as well.

Provider referral to GC/T is a known facilitator to receipt of GC/T services. ^14,27,28 We found that a substantial proportion of women did not receive a GC/T referral. This finding suggests that interventions aimed to improve provider referral to GC/T may be warranted. In one study, genetic providers estimated lower receipt of referrals from primary care providers compared to oncologists. ²⁹ When comparing predictors of GC/T referrals in Black women, Hughes and colleagues found that oncologists were the primary source of referrals.³⁰ Data from Graves and colleagues suggest that providers who are not linked to cancer centers may be unaware of available GC/T services or may opt to test patients without making counseling referrals.³¹ Rolnick and colleagues suggest that educating providers about referral guidelines and increasing primary care providers’ awareness of the value of obtaining family history of cancer as two strategies to improve the referral process.²⁹ Unfortunately, there are little data regarding effective strategies to guide appropriate GC/T referrals highlighting the need for more research.

Findings related to medical mistrust and self-efficacy as important socio-cultural determinant of engagement expand other work that demonstrated that cultural beliefs (e.g., fatalistic beliefs, temporal orientation) were associated with GC/T behaviors in Black women undergoing genetic risk assessment.³² Both factors are potentially modifiable and should be considered for future interventions. Efforts should be made to ensure that service environments are culturally relevant across the continuum from pre-counseling risk assessment to post-test counseling.²⁴

At the individual level, physicians, genetic counselors and genomics researchers can improve medical care by ensuring that risk assessment and risk reduction strategies include a clear presentation of the benefits, not just the risks of testing, and by addressing patient trust and concerns about the medical system. One study found that mistrust of the medical system was significantly associated with Black women’s and Latina’s concerns about disadvantages of genetic testing for hereditary breast cancer.^13,19 Addressing concerns about medical care within patient encounters seems prudent. Our measure of genetic discrimination concerns did not predict GC/T engagement. Other studies have reported that discrimination experiences influence minorities’ healthcare use.³³

While the present study has several strengths such as its focus on an underserved population with regards to GC/T services, inclusion of novel measures to understand GC/T engagement, and inclusion of women across various levels of SES strata some limitations should be noted. First, this sample was conducted in a metropolitan region and findings may not be generalizable to Black women in rural areas or non-urban settings. Also, Black women who are uninsured or those who have lower levels of education may have less GC/T awareness and engagement than we found in our sample. Next, the sample size is relatively small. Additionally, we did not use a population-based sampling approach. Future studies that aim to confirm or expand findings may benefit from such population-based sampling.

The movement towards “personalized medicine” and practice of individual counseling and testing must be juxtaposed against a woman’s broader social context. If minority communities have distrust of the medical system and have not benefited from traditional technologies, it is possible that disparities will persist or even widen in the pharmacogenomics era. Armstrong and colleagues found that Blacks were late adopters of BRCA1/2 technologies.⁷ This later adoption, along with persistent lower GC/T engagement, suggests a lack of acceptance and/or understanding of BRCA1/2. Women’s self-efficacy in obtaining GC/T services may also be improved with community-level education may improve the level of “genetic health literacy” within Black women’s social environment. Offering basic genetic education and gaining community consultation are two strategies to examine community-specific concerns and/or benefits regarding genetic services.^34,35 Similar efforts regarding HIV/AIDS helped penetrate mistrust in the Black community and improve service access.³⁶ Disparities in receipt of GC/T have been well-documented and yet few successful strategies to remediate these differences have been identified.³⁷ Furthermore, there has been limited modification in approaches to provision of GC/T services for minority women. The finding of the importance of self-efficacy in obtaining services is noteworthy given that one of the items on the self-efficacy scale was related to knowing how to pay for GC/T services. Providing education to higher risk women and increasing providing referrals may create a higher demand for testing which may not be accessible to all women. In populations that are under or uninsured this could be problematic since there are still limited options to cover testing costs. Thus, there are limited alternatives for underserved women to cover expenses for increased testing, differential screening (e.g., MRI) and/or prophylactic surgeries. Additionally, if women were tested and would need to increase their frequency and type of screening (e.g., MRI) it is unclear if these services would be accessible to the underserved.

Whether Blacks lower GC/T engagement contributes to disparities in the prevention of hereditary breast cancer is uncertain. However, interventions and resources are needed ensure that the benefits of the BRCA1/2 discovery extended to all women with increased risk of carrying these mutations.^38,39