Evaluation of disparities in perceived healthcare discrimination among BRCA1/2-positive women from medically underserved populations

References

• Adams, I., J. Christopher, K. P. Williams, and V. B. Sheppard. 2015. What black women know and want to know about counseling and testing for BRCA1/2. Journal of Cancer Education 30 (2):344–52. doi:10.1007/s13187-014-0740-9.
   PubMed Web of Science ®Google Scholar
• American Cancer Society (ACS). 2022a. Cancer statistics. https://www.cancer.gov/about-cancer/understanding/statistics.
   Google Scholar
• American Cancer Society (ACS). 2022b. Family cancer syndromes. https://www.cancer.org/cancer/cancer-causes/genetics/family-cancer-syndromes.html.
   Google Scholar
• Armstrong, K., K. Calzone, J. Stopfer, G. Fitzgerald, J. Coyne, and B. Weber. 2000. Factors associated with decisions about clinical BRCA1/2 testing. Cancer Epidemiology, Biomarkers & Prevention 9 (11):1251–4. https://pubmed.ncbi.nlm.nih.gov/11097234/
   PubMed Web of Science ®Google Scholar
• Benjamins, M. R., M. Middleton, and L. G. Koniaris. 2019. Perceived discrimination in medical settings and perceived quality of care: A population-based study in Chicago. PLoS One 14 (4):e0215976. doi:10.1371/journal.pone.0215976.
   PubMed Web of Science ®Google Scholar
• Bird, S. T., and L. M. Bogart. 2001. Perceived race-based and socioeconomic status (SES)-based discrimination in interactions with health care providers. Ethnicity & Disease 11 (3):554–63. https://pubmed.ncbi.nlm.nih.gov/11572421/
   PubMedGoogle Scholar
• Butrick, M., S. Kelly, B. N. Peshkin, G. Luta, R. Nusbaum, G. W. Hooker, K. Graves, L. Feeley, C. Isaacs, H. B. Valdimarsdottir et al. 2015. Disparities in uptake of BRCA1/2 genetic testing in a randomized trial of telephone counseling. Genetics in Medicine 17 (6):467–75. doi:10.1038/gim.2014.125.
   PubMed Web of Science ®Google Scholar
• Chapman-Davis, E., Z. N. Zhou, J. C. Fields, M. K. Frey, B. Jordan, K. J. Sapra, S. Chatterjee-Paer, A. D. Carlson, and K. M. Holcomb. 2021. Racial and ethnic disparities in genetic testing at a hereditary breast and ovarian cancer center. Journal of General Internal Medicine 36 (1):35–42. doi:10.1007/s11606-020-06064-x.
   PubMed Web of Science ®Google Scholar
• Collins, J. M., and C. Isaccs. 2020. Management of breast cancer risk in BRCA1/2 mutation carriers who are unaffected with cancer. The Breast Journal 26 (8):1520–7. doi:10.1111/tbj.13970.
   PubMed Web of Science ®Google Scholar
• Fasching, P. A. 2018. Breast cancer in young women: Do BRCA1 or BRCA2 mutations matter? The Lancet Oncology 19 (2):150–1. doi:10.1016/S1470-2045(18)30008-1.
   PubMed Web of Science ®Google Scholar
• Gammon, A. D., E. Rothwell, R. Simmons, J. T. Lowery, L. Ballinger, D. A. Hill, K. M. Boucher, and A. Yeomans Kinney. 2011. Awareness and preferences regarding BRCA1/2 genetic counseling and testing among Latinas and non-Latina white women at increased risk for hereditary breast and ovarian cancer. Journal of Genetic Counseling 20 (6):625–38. doi:10.1007/s10897-011-9376-7.
   PubMed Web of Science ®Google Scholar
• Ginter, A. C. 2020. “The day you lose your hope is the day you start to die”: Quality of life measured by young women with metastatic breast cancer. Journal of Psychosocial Oncology 38 (4):418–34. doi:10.1080/07347332.2020.1715523.
   PubMed Web of Science ®Google Scholar
• Godet, I., and D. M. Gilkes. 2017. BRCA1 and BRCA2 mutations and treatment strategies for breast cancer. Integrative Cancer Science and Technologies 4 (1):10. doi:10.15761/ICST.1000228.
   Google Scholar
• Gonzales, F. A., M. Sangaramoorthy, L. A. Dwyer, S. Shariff-Marco, A. M. Allen, A. W. Kurian, J. Yang, M. M. Langer, L. Allen, B. B. Reeve et al. 2019. Patient-clinician interactions and disparities in breast cancer care: The equality in breast cancer care study. Journal of Cancer Survivorship 13 (6):968–80. doi:10.1007/s11764-019-00820-7.
   PubMed Web of Science ®Google Scholar
• Graves, K. D., J. Christopher, T. M. Harrison, B. N. Peshkin, C. Isaacs, and V. B. Sheppard. 2011. Providers’ perceptions and practices regarding BRCA1/2 genetic counseling and testing in African American women. Journal of Genetic Counseling 20 (6):674–89. doi:10.1007/s10897-011-9396-3.
   PubMed Web of Science ®Google Scholar
• Greco, C. 2022. The uncertain presence: Experiences of living with metastatic breast cancer. Medical Anthropology 41 (2):129–40. doi:10.1080/01459740.2021.1941003.
   PubMed Web of Science ®Google Scholar
• Greene, N., J. Malone, M. A. Adams, L. T. Dean, and T. Poteat. 2020. “This is some mess right here”: Exploring interactions between black sexual minority women and health care providers for breast cancer screening and care. Cancer 127 (1):74–81. doi:10.1002/cncr.33219.
   PubMed Web of Science ®Google Scholar
• Hall, M. J., J. E. Reid, L. A. Burbidge, D. Pruss, A. M. Deffenbaugh, C. Frye, R. J. Wenstrup, B. E. Ward, T. A. Scholl, and W. W. Noll. 2009. BRCA1 and BRCA2 mutations in women of different ethnicities undergoing testing for hereditary breast-ovarian cancer. Cancer 115 (10):2222–33. doi:10.1002/cncr.24200.
   PubMed Web of Science ®Google Scholar
• Harris, P. A., R. Taylor, B. L. Minor, V. Elliott, M. Fernandez, L. O’Neal, L. McLeod, G. Delacqua, F. Delacqua, J. Kirby et al. 2019. The REDCap consortium: Building an international community of software platform partners. Journal of Biomedical Informatics 95:103208. doi:10.1016/j.jbi.2019.103208.
   PubMed Web of Science ®Google Scholar
• Hausmann, L. R. M., N. R. Kressin, B. H. Hanusa, and S. A. Ibrahim. 2010. Perceived racial discrimination in health care and its association with patients’ healthcare experiences: Does the measure matter? Ethnicity & Disease 20 (1):40–7. https://pubmed.ncbi.nlm.nih.gov/20178181/.
   PubMed Web of Science ®Google Scholar
• Ho, I. K., T. A. Sheldon, and E. Botelho. 2021. Medical mistrust among women with intersecting marginalized identities: A scoping review. Ethnicity & Disease 14:1–19. doi:10.1080/13557858.2021.1990220.
   Google Scholar
• Houlihan, M. C., and J. D. Tariman. 2017. Comparison of outcome measures for traditional and online support groups for breast cancer patients: An integrative literature review. Journal of the Advanced Practitioner in Oncology 8 (4):348–59. https://www.ncbi.nlm.nih.gov/pubmed/30018841.
   PubMedGoogle Scholar
• Kuchenbaecker, K. B., J. L. Hopper, D. R. Barnes, K. A. Phillips, T. M. Mooij, M. J. Roos-Blom, S. Jervis, F. E. van Leeuwen, R. L. Milne, N. Andrieu et al. 2017. Risks of breast, ovarian, and contralateral breast cancer for BRCA1 and BRCA2 mutation carriers. JAMA 317 (23):2402. doi:10.1001/jama.2017.7112.
   PubMed Web of Science ®Google Scholar
• Levy, D. E., S. D. Byfield, C. B. Comstock, J. E. Garber, S. Syngal, W. H. Crown, and A. E. Shields. 2011. Underutilization of BRCA1/2 testing to guide breast cancer treatment: Black and Hispanic women particularly at risk. Genetics in Medicine 13 (4):349–55. doi:10.1097/GIM.0b013e3182091ba4.
   PubMed Web of Science ®Google Scholar
• Liede, A., C. A. Mansfield, K. A. Metcalfe, M. A. Price, Kathleen Cuningham Foundation Consortium for Research into Familial Breast Cancer, C. Snyder, H. T. Lynch, S. Friedman, J. Amelio, J. Posner et al. 2017. Preferences for breast cancer risk reduction among BRCA1/BRCA2 mutation carriers: A discrete-choice experiment. Epidemiology 165 (2):433–44. doi:10.1007/s10549-017-4332-3.
   Google Scholar
• Long, E. F., and P. A. Ganz. 2015. Cost-effectiveness of universal BRCA1/2 screening evidence-based decision making. JAMA Oncology 1 (9):1217–18. doi:10.1001/jamaoncol.2015.2340.
   PubMed Web of Science ®Google Scholar
• Mau, C., and M. Untch. 2017. Prophylactic surgery: For whom, when and how. Breast Care 12 (6):379–84. doi:10.1159/000485830.
   PubMed Web of Science ®Google Scholar
• McCarthy, A. M., M. Bristol, S. M. Domchek, P. W. Groeneveld, Y. Kim, N. Montanya, J. A. Shea, and K. Armstrong. 2016. Health care segregation, physician recommendation, and racial disparities in BRCA1/2 testing among women with breast cancer. Journal of Clinical Oncology 34 (22):2610–8. doi:10.1200/JCO.2015.66.0019.
   PubMed Web of Science ®Google Scholar
• Mouslim, M. C., R. M. Johnson, and L. T. Dean. 2020. Healthcare system distrust and the breast cancer continuum of care. Breast Cancer Research and Treatment 180 (1):33–44. doi:10.1007/s10549-020-05538-0.
   PubMed Web of Science ®Google Scholar
• National Cancer Institute (NCI). 2022. BRCA gene mutations: Cancer risk and genetic testing. https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet.
   Google Scholar
• Peek, M. E., M. Nunez-Smith, M. Drum, and T. T. Lewis. 2011. Adapting the everyday discrimination scale to medical settings: Reliability and validity testing in a sample of African American patients. Ethnicity & Disease 21 (4):502–9. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3350778/.
   PubMed Web of Science ®Google Scholar
• Petelin, L., L. Hossack, M. Shanahan, G. Mitchell, D. Liew, P. A. James, and A. H. Trainer. 2020. Cost-effectiveness of long-term clinical management of BRCA pathogenic variant carriers. Genetics in Medicine 22 (5):831–9. doi:10.1038/s41436-020-0751-3.
   PubMed Web of Science ®Google Scholar
• Peterson, E. A., K. J. Milliron, K. E. Lewis, S. D. Goold, and S. D. Merajver. 2002. Health insurance and discrimination concerns and BRCA1/2 testing in a clinic population. Cancer Epidemiology, Biomarkers & Prevention 11 (1):79–87.https://pubmed.ncbi.nlm.nih.gov/11815404/.
   PubMed Web of Science ®Google Scholar
• Song, Y., W. T. Barry, D. S. Seah, N. M. Tung, J. E. Garber, and N. U. Lin. 2020. Patterns of recurrence and metastasis in BRCA1/BRCA2-associated breast cancers. Cancer 126 (2):271–80. doi:10.1002/cncr.32540.
   PubMed Web of Science ®Google Scholar
• StataCorp, L. 2019. Stata statistical software: Release 16. College Station, TX.
   Google Scholar
• Sutton, A. L., N. Hagiwara, R. A. Perera, and V. B. Sheppard. 2021. Assessing perceived discrimination as reported by black and white women diagnosed with breast cancer. Journal of Racial and Ethnic Health Disparities 8 (3):589–95. doi:10.1007/s40615-020-00817-4.
   PubMed Web of Science ®Google Scholar
• Sutton, A. L., J. He, M. C. Edmonds, and V. B. Sheppard. 2019. Medical mistrust in black breast cancer patients: Acknowledging the roles of the trustor and the trustee. Journal of Cancer Education 34 (3):600–7. doi:10.1007/s13187-018-1347-3.
   PubMed Web of Science ®Google Scholar
• Sutton, A. L., J. He, E. Tanner, M. C. Edmonds, A. Henderson, A. Hurtado de Mendoza, and V. B. Sheppard. 2020. Understanding medical mistrust in black women at risk of BRCA1/2 mutations. Journal of Health Disparities Research and Practice 12 (3):35–47. https://www.ncbi.nlm.nih.gov/pubmed/32995070.
   Google Scholar
• Terui, S., J. V. Goldsmith, J. Huang, and J. Williams. 2020. Health literacy and health communication training for underserved patients and informal family caregivers. Journal of Health Care for the Poor and Underserved 31 (2):635–45. doi:10.1353/hpu.2020.0050.
   PubMed Web of Science ®Google Scholar
• Trottier, M., J. Lunn, R. Butler, D. Curling, T. Turnquest, R. Royer, M. R. Akbari, T. Donenberg, J. Hurley, and S. A. Narod. 2014. Strategies for recruitment of relatives of BRCA mutation carriers to a genetic testing program in the Bahamas. Clinical Genetics 88 (2):182–6. doi:10.1111/cge.12468.
   PubMed Web of Science ®Google Scholar
• US Census Bureau. 2022. How the census bureau measures poverty. https://www.census.gov/topics/income-poverty/poverty/guidance/poverty-measures.html.
   Google Scholar
• US Department of Labor. 2022. Genetic information nondiscrimination act (GINA). https://www.dol.gov/agencies/ebsa/laws-and-regulations/laws/gina.
   Google Scholar
• US Equal Employment Opportunity Commission (EEOC). 2008. The genetic information nondiscrimination act of 2008. https://www.eeoc.gov/statutes/genetic-information-nondiscrimination-act-2008.
   Google Scholar
• van Zelst, J. C. M., R. D. M. Mus, G. Woldringh, M. J. C. M. Rutten, P. Bult, S. Vreeman, M. de Jong, N. Karssemeijer, N. Hoogerbrugge, and R. M. Mann. 2017. Surveillance of women with the BRCA1 or BRCA2 mutation by using biannual automated breast US, MR imaging, and mammography. Radiology 285 (2):376–88. doi:10.1148/radiol.2017161218.
   PubMed Web of Science ®Google Scholar
• Wideroff, L., A. O. Garceau, M. H. Greene, M. Dunn, T. McNeel, P. L. Mai, G. Willis, L. Gonsalves, M. Martin, and B. I. Graubard. 2010. Coherence and completeness of population-based family cancer reports. Cancer Epidemiology, Biomarkers & Prevention 19 (3):799–810. doi:10.1158/1055-9965.EPI-09-1138.
   PubMed Web of Science ®Google Scholar
• Yedjou, C. G., J. N. Sims, L. Miele, F. Noubissi, L. Lowe, D. D. Fonseca, R. A. Alo, M. Payton, and P. B. Tchounwou. 2019. Health and racial disparity in breast cancer In Breast cancer metastasis and drug resistance, ed. A. Ahmad, Vol. 1152, 31–49. Springer. doi:10.1007/978-3-030-20301-6_3.
   Google Scholar