Understanding Medical Mistrust in Black Women at Risk of BRCA 1/2 Mutations

35 Understanding Medical Mistrust in Black Women at Risk of BRCA 1/2 Mutations Sutton et al. Journal of Health Disparities Research and Practice Volume 12, Issue 3, Fall 2019, pp. 35-47 © 2011 Center for Health Disparities Research School of Community Health Sciences University of Nevada, Las Vegas Understanding Medical Mistrust in Black Women at Risk of BRCA 1/2 Mutations Arnethea L. Sutton, PhD, Virginia Commonwealth University School of Medicine Jun He, PhD, Mayo Clinic Erin Tanner, MS, Greater Washington Maternal-Fetal Medicine and Genetics Megan C. Edmonds, MPH, Virginia Commonwealth University School of Medicine Alesha Henderson, MA, Virginia Commonwealth University School of Medicine Alejandra Hurtado de Mendoza, PhD, Georgetown University Medical Center Vanessa B. Sheppard, PhD, Virginia Commonwealth University School of Medicine Corresponding Author: Arnethea L. Sutton, PhD Virginia Commonwealth University School of Medicine 830 East Main Street Richmond, VA 23219 Phone: 804-628-3083 ABSTRACT: The benefits of genetic counseling and testing for hereditary breast and/or ovarian cancer (HBOC) are well documented; however, Black women are less likely to use these services compared to White women. Mistrust of the medical system has been associated with Black women’s use of genetic counseling and testing (GCT). However, relatively little is known about the correlates of medical mistrust in Black women at increased risk of HBOC. In this study, we examined the prevalence and predictors of medical mistrust in 94 Black women at-risk of HBOC. Most women were married (48.7%) and had at least some collegiate education (57.1%). While no predisposing characteristics were significantly related to medical mistrust, bivariate analysis indicated significant relationships between mistrust and fatalism (p=0.04), perceptions of discrimination in the healthcare setting (p=0.01), and self-efficacy in obtaining GCT (p=0.01). Multivariable analysis revealed that women who reported more discriminatory experiences and women with less confidence in obtaining GCT expressed greater medical mistrust. Multilevel approaches are needed to address psychosocial factors associated with feelings of mistrust. Future efforts must not solely focus on educating women on the importance of and need for GCT; addressing structural barriers, such as patient-provider interactions, that contribute to mistrust must become a priority. Journal of Health Disparities Research and Practice Volume 12, Issue 3, Fall 2019 http://digitalscholarship.unlv.edu/jhdrp/ Follow on Facebook: Health.Disparities.Journal Follow on Twitter: @jhdrp 36 Understanding Medical Mistrust in Black Women at Risk of BRCA 1/2 Mutations Sutton et al. Keywords: Genetic Counseling; Genetic Testing; Black Women; Medical Mistrust; Hereditary Breast/Ovarian Cancer INTRODUCTION Pathogenic genetic mutations, most commonly related to BRCA 1 and BRCA2 are implicated in up to 10% of all breast cancers (American Cancer, 2016). For women at high risk for such mutations (e.g. ≤ 50 years of age at time of breast cancer diagnosis, family history of breast and/or ovarian cancer), National Comprehensive Cancer Network (NCCN) guidelines recommend referral to genetic counseling and testing (GCT) when appropriate. Access to GCT is an important part of cancer control, but in this fast-moving area of medicine many minority patients are being “left behind” (Hall & Olopade, 2006; Levy et al., 2011). Despite NCCN guidelines, Black women significantly underutilize GCT compared to White women (Hall & Olopade, 2006; Levy et al., 2011). Even after adjusting for risk of carrying a mutation, Black women remain far less likely to receive GCT. The etiology of low participation in GCT for Black women may include several mutable (e.g. self-efficacy, low-awareness of GCT) and non-mutable (e.g. age) factors (Glenn, Chawla, & Bastani, 2012; Mays et al., 2012; Sheppard et al., 2014; Sherman, Miller, Shaw, Cavanagh, & Sheinfeld Gorin, 2014). Several studies have demonstrated lower interest in and awareness of GCT for BRCA1/2 among Black women (Andrykowski, Munn, & Studts, 1996; Armstrong et al., 2000; Donovan & Tucker, 2000; Hughes et al., 1997; Kaplan et al., 2006; Machirori, Patch, & Metcalfe, 2019; Mai et al., 2014). However, GCT is especially important for Black women as they have the highest breast cancer recurrence and mortality rates (American Cancer, 2016). Additionally, genetic mutations are highly prevalent in women with triple negative breast cancer (TNBC). TNBC is an aggressive type of cancer that is negative for the three most common receptors (estrogen, progesterone, and HER-2) and is associated with poorer outcomes that occurs more frequently in Blacks (Greenup et al., 2013). Prior studies have identified contributing factors of GCT underutilization by Black women (e.g. low knowledge, lack of physician referrals, cost); however, we still know little about how these factors impact at-risk Black women and Black survivors’ decisions to utilize this resource (Cragun et al., 2017; Sherman et al., 2014). Though underutilization of GCT by Black women can be attributed to numerous factors, medical mistrust deserves particular attention as Black women continue to report stronger feelings of medical mistrust than White women (Ford, Alford, Britton, McClary, & Gordon, 2007; Sheppard, Mays, LaVeist, & Tercyak, 2013; Suther & Kiros, 2009). Medical mistrust can be defined as a lack of trust in healthcare organizations and in medical personnel (Omodei & McLennan, 2000). Reasons that contribute to Black women’s mistrust include, but are not limited to, historical events, reports of discrimination in healthcare settings, and other healthcare factors (Gamble, 1997; Moore, Hamilton, Pierre-Louis, & Jennings, 2013; Smith & Blumenthal, 2012; Zimmerman et al., 2006). Additionally, medical mistrust contributes to underuse of healthcare services, medication and other life-saving treatment, including GCT (Bickell, Weidmann, Fei, Lin, & Leventhal, 2009; Ford et al., 2007; Forman & Hall, 2009; Sheppard et al., 2013). At-risk Black women who report greater mistrust in the medical establishment have been shown to have lower engagement in GCT (Sheppard et al., 2014). To our knowledge, there are no studies that examines Journal of Health Disparities Research and Practice Volume 12, Issue 3, Fall 2019 http://digitalscholarship.unlv.edu/jhdrp/ Follow on Facebook: Health.Disparities.Journal Follow on Twitter: @jhdrp 37 Understanding Medical Mistrust in Black Women at Risk of BRCA 1/2 Mutations Sutton et al. predictors of mistrust in at-risk Black women; therefore, it is important to identify and understand contributors of this group’s mistrust in the medical establishment to further efforts to engage these women in behaviors that contribute to positive health outcomes. The aims of this study are to inform future interventions by (1) describing the prevalence of medical mistrust in Black wom (...truncated)