Abstract
Purpose
Significant disparity exists in the diagnosis, treatment, and survivorship outcomes among Black breast cancer (BC) survivors. Black BC survivors have more significant survivorship issues and a greater burden of illness than White counterparts. Barriers to rehabilitation exist for all BC survivors but are magnified in Black BC survivors. The purpose of this qualitative research was to document patient, clinician, and researchers’ perceptions surrounding contributing factors, lived experiences, and potential solutions to racial disparity in BC survivorship.
Methods
A narrative approach was utilized to identify themes from a series of four virtual healthcare provider forums that explored lived personal and professional experiences, issues, and potential solutions surrounding racial disparity in BC survivorship. Forums included perspectives of patients, healthcare providers, researchers, and stakeholders in the BC field. An independent thematic analysis was performed by the investigators, all of whom have emic perspectives with respect to race and/or BC.
Results
Three main themes were identified related to racial disparity in BC survivorship: (1) societal and cultural contributing factors, (2) contribution of healthcare providers and systems, and (3) models of care and research considerations.
Conclusions
The findings provide compelling documentation of lived personal and professional experiences of racial disparity in BC survivorship. Potential solutions exist and must be enacted immediately to ensure equitable survivorship outcomes for Black individuals following a BC diagnosis.
Implications for Cancer Survivors
Increased awareness related to racial disparity in BC survivorship among survivors, healthcare providers, and researchers will contribute to health equity and improved outcomes for Black individuals.
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Change history
22 July 2023
A Correction to this paper has been published: https://doi.org/10.1007/s11764-023-01393-2
References
Yedjou CG, Sims JN, Miele L, Noubissi F, Lowe L, Fonseca DD, et al. Health and racial disparity in breast cancer. Adv Exp Med Biol. 2019;1152:31–49. https://doi.org/10.1007/978-3-030-20301-6_3.
DeSantis CE, Fedewa SA, Goding Sauer A, Kramer JL, Smith RA, Jemal A. Breast cancer statistics, 2015: convergence of incidence rates between black and white women. CA Cancer J Clin. 2016;66(1):31–42. https://doi.org/10.3322/caac.21320.
Williams DR, Mohammed SA, Shields AE. Understanding and effectively addressing breast cancer in African American women: unpacking the social context. Cancer. 2016;122(14):2138–49. https://doi.org/10.1002/cncr.29935.
Baquet CR, Mishra SI, Commiskey P, Ellison GL, DeShields M. Breast cancer epidemiology in blacks and whites: disparities in incidence, mortality, survival rates and histology. J Natl Med Assoc. 2008;100(5):480–8. https://doi.org/10.1016/s0027-9684(15)31294-3.
Williams DR, Lawrence JA, Davis BA. Racism and health: evidence and needed research. Annu Rev Public Health. 2019;40:105–25. https://doi.org/10.1146/annurev-publhealth-040218-043750.
Cheville AL, Tchou J. Barriers to rehabilitation following surgery for primary breast cancer. J Surg Oncol. 2007;95(5):409–18. https://doi.org/10.1002/jso.20782.
Vuksanovic D, Sanmugarajah J, Lunn D, Sawhney R, Eu K, Liang R. Unmet needs in breast cancer survivors are common, and multidisciplinary care is underutilised: the Survivorship Needs Assessment Project. Breast Cancer. 2021;28(2):289–97. https://doi.org/10.1007/s12282-020-01156-2.
Binkley JM, Harris SR, Levangie PK, Pearl M, Guglielmino J, Kraus V, et al. Patient perspectives on breast cancer treatment side effects and the prospective surveillance model for physical rehabilitation for women with breast cancer. Cancer. 2012;118(8 Suppl):2207–16. https://doi.org/10.1002/cncr.27469.
McNeely ML, Binkley JM, Pusic AL, Campbell KL, Gabram S, Soballe PW. A prospective model of care for breast cancer rehabilitation: postoperative and postreconstructive issues. Cancer. 2012;118(8 Suppl):2226–36. https://doi.org/10.1002/cncr.27468.
Yoo GJ, Levine EG, Pasick R. Breast cancer and coping among women of color: a systematic review of the literature. Support Care Cancer. 2014;22(3):811–24. https://doi.org/10.1007/s00520-013-2057-3.
Mollica M, Nemeth L, Newman SD, Mueller M. Quality of life in African American breast cancer survivors: an integrative literature review. Cancer Nurs. 2015;38(3):194–204. https://doi.org/10.1097/ncc.0000000000000160.
Mollica M, Newman SD. Breast cancer in African Americans: from patient to survivor. J Transcult Nurs. 2014;25(4):334–40. https://doi.org/10.1177/1043659614524248.
Coughlin SS, Yoo W, Whitehead MS, Smith SA. Advancing breast cancer survivorship among African-American women. Breast Cancer Res Treat. 2015;153(2):253–61. https://doi.org/10.1007/s10549-015-3548-3.
Husain M, Nolan TS, Foy K, Reinbolt R, Grenade C, Lustberg M. An overview of the unique challenges facing African-American breast cancer survivors. Support Care Cancer. 2019;27(3):729–43. https://doi.org/10.1007/s00520-018-4545-y.
Barsevick AM, Leader A, Bradley PK, Avery T, Dean LT, DiCarlo M, et al. Post-treatment problems of African American breast cancer survivors. Support Care Cancer. 2016;24(12):4979–86. https://doi.org/10.1007/s00520-016-3359-z.
Schmitz KH, Stout NL, Andrews K, Binkley JM, Smith RA. Prospective evaluation of physical rehabilitation needs in breast cancer survivors: a call to action. Cancer. 2012;118(8 Suppl):2187–90. https://doi.org/10.1002/cncr.27471.
Li CC, Matthews AK, Asthana A, Shah RC. The impact of neighborhood disadvantage on health-related quality of life among African American and White cancer survivors. Transl Cancer Res. 2019;8(Suppl 4):S313–S22. https://doi.org/10.21037/tcr.2019.05.30.
Morehead-Gee AJ, Pfalzer L, Levy E, McGarvey C, Springer B, Soballe P, et al. Racial disparities in physical and functional domains in women with breast cancer. Support Care Cancer. 2011. https://doi.org/10.1007/s00520-011-1285-7.
Flores AM, Nelson J, Sowles L, Stephenson RG, Robinson K, Cheville A, et al. Lymphedema signs, symptoms, and diagnosis in women who are in minority and low-income groups and have survived breast cancer. Phys Ther. 2020;100(3):487–99. https://doi.org/10.1093/ptj/pzaa002.
Spencer JC, Rotter JS, Eberth JM, Zahnd WE, Vanderpool RC, Ko LK, et al. Employment changes following breast cancer diagnosis: the effects of race and place. J Natl Cancer Inst. 2020;112(6):647–50. https://doi.org/10.1093/jnci/djz197.
Russell KM, Von Ah DM, Giesler RB, Storniolo AM, Haase JE. Quality of life of African American breast cancer survivors: how much do we know? Cancer Nurs. 2008;31(6):E36–45. https://doi.org/10.1097/01.NCC.0000339254.68324.d7.
Brick R, Lyons KD, Bender C, Eilers R, Ferguson R, Pergolotti M, et al. Factors influencing utilization of cancer rehabilitation services among older breast cancer survivors in the USA: a qualitative study. Support Care Cancer. 2022;30(3):2397–405. https://doi.org/10.1007/s00520-021-06678-9.
Lai L, Binkley J, Jones V, Kirkpatrick S, Furbish C, Stratford P, et al. Implementing the prospective surveillance model (PSM) of rehabilitation for breast cancer patients with 1-year postoperative follow-up, a prospective, observational study. Ann Surg Oncol. 2016;23(10):3379–84. https://doi.org/10.1245/s10434-016-5315-z.
Overcash JA. Narrative research: a review of methodology and relevance to clinical practice. Crit Rev Oncol Hematol. 2003;48(2):179–84. https://doi.org/10.1016/j.critrevonc.2003.04.006.
Butina M. A narrative approach to qualitative inquiry. Clin Lab Sci. 2015;28(3):190–6.
Atkinson S, Rubinelli S. Narrative in cancer research and policy: voice, knowledge and context. Crit Rev Oncol Hematol. 2012;84 Suppl 2(0 2):S11–6. https://doi.org/10.1016/s1040-8428(13)70004-0.
Hsu MY, McCormack B. The experience of applying a narrative research approach with older people. J Nurs Res. 2010;18(4):249–57. https://doi.org/10.1097/JNR.0b013e3181fc669e.
Bache RA, Bhui KS, Dein S, Korszun A. African and black caribbean origin cancer survivors: a qualitative study of the narratives of causes, coping and care experiences. Ethn Health. 2012;17(1-2):187–201. https://doi.org/10.1080/13557858.2011.635785.
Levesque J-F, Harris MF, Russell G. Patient-centred access to health care: conceptualising access at the interface of health systems and populations. Int J Equity Health. 2013;12(1):18. https://doi.org/10.1186/1475-9276-12-18.
Stout NL, Binkley JM, Schmitz KH, Andrews K, Hayes SC, Campbell KL, et al. A prospective surveillance model for rehabilitation for women with breast cancer. Cancer. 2012;118(8 Suppl):2191–200. https://doi.org/10.1002/cncr.27476.
Lythcott N, Green BL, Kramer BZ. The perspective of African-American breast cancer survivor-advocates. Cancer. 2003;97(1 Suppl):324–8. https://doi.org/10.1002/cncr.11013.
Jackson K, Waters M, Newman LA. Sisters Network, Inc.: the importance of African American survivor advocates in addressing breast cancer disparities. Curr Breast Cancer Rep. 2021;13(2):69–71. https://doi.org/10.1007/s12609-021-00404-4.
Collin LJ, Gaglioti AH, Beyer KM, Zhou Y, Moore MA, Nash R, et al. Neighborhood-level redlining and lending bias are associated with breast cancer mortality in a large and diverse metropolitan area. Cancer Epidemiol Biomarkers Prev. 2021;30(1):53–60. https://doi.org/10.1158/1055-9965.EPI-20-1038.
Davis CM, Myers HF, Nyamathi AM, Lewis M, Brecht ML. The meaning of survivorship as defined by African American breast cancer survivors. J Transcult Nurs. 2016;27(3):277–85. https://doi.org/10.1177/1043659614561678.
Greenhalgh T, Russell J, Swinglehurst D. Narrative methods in quality improvement research. Qual Saf Health Care. 2005;14(6):443–9. https://doi.org/10.1136/qshc.2005.014712.
van Ryn M, Burgess DJ, Dovidio JF, Phelan SM, Saha S, Malat J, et al. The impact of racism on clinician cognition, behavior, and clinical decision making. Du Bois Rev. 2011;8(1):199–218. https://doi.org/10.1017/s1742058x11000191.
Pérez-Stable EJ, El-Toukhy S. Communicating with diverse patients: how patient and clinician factors affect disparities. Patient Educ Couns. 2018;101(12):2186–94. https://doi.org/10.1016/j.pec.2018.08.021.
Dehon E, Weiss N, Jones J, Faulconer W, Hinton E, Sterling S. A systematic review of the impact of physician implicit racial bias on clinical decision making. Acad Emerg Med. 2017;24(8):895–904. https://doi.org/10.1111/acem.13214.
Hall WJ, Chapman MV, Lee KM, Merino YM, Thomas TW, Payne BK, et al. Implicit racial/ethnic bias among health care professionals and its influence on health care outcomes: a systematic review. Am J Public Health. 2015;105(12):e60–76. https://doi.org/10.2105/ajph.2015.302903.
AAMC workforce report https://www.aamc.org/data-reports/workforce/interactive-data/figure-18-percentage-all-active-physicians-race/ethnicity-2018 Accessed January 15, 2022.
APTA workforce analysis. https://www.apta.org/your-career/careers-in-physical-therapy/workforce-data/apta-physical-therapy-workforce-analysis Accessed February 2, 2022.
Stout NL, Sleight A, Pfeiffer D, Galantino ML, deSouza B. Promoting assessment and management of function through navigation: opportunities to bridge oncology and rehabilitation systems of care. Support Care Cancer. 2019;27(12):4497–505. https://doi.org/10.1007/s00520-019-04741-0.
Mollica MA, Nemeth LS, Newman SD, Mueller M, Sterba K. Peer navigation in African American breast cancer survivors. Patient Relat Outcome Meas. 2014;5:131–44. https://doi.org/10.2147/PROM.S69744.
Gerber LH, Stout NL, Schmitz KH, Stricker CT. Integrating a prospective surveillance model for rehabilitation into breast cancer survivorship care. Cancer. 2012;118(8 Suppl):2201–6. https://doi.org/10.1002/cncr.27472.
Springer BA, Levy E, McGarvey C, Pfalzer LA, Stout NL, Gerber LH, et al. Pre-operative assessment enables early diagnosis and recovery of shoulder function in patients with breast cancer. Breast Cancer Res Treat. 2010;120(1):135–47. https://doi.org/10.1007/s10549-009-0710-9.
Acknowledgements
The authors acknowledge the contributions of the moderators and panelists: Prisca Collins, PT, PhD, Associate Professor, Florida Southern College, Lakeland, FL; Lorraine Dean, ScD, Associate Professor, Johns Hopkins Bloomberg School of Public Health; Jemea Dorsey, MS, BA, President and CEO, Center for Black Women’s Wellness, Atlanta, GA; Krystal Gross, BS, Logistics Expert, Pink Warrior, Atlanta; Joy Jenrette, JD, BSE, Breast Cancer Advocate; Consuelo Ross, CPN, President and Founder, Surviving the Odds, Inc., Kansas City, MO; Robert Smith, PhD, Senior Vice President for Cancer Control, American Cancer Society, Atlanta; Nicole L. Stout DPT, CLT-LANA, FAPTA, Research Assistant Professor, West Virginia University Cancer Institute and Associate Director of the Survivorship Program, Morgantown, WV; Tiah Tomlin, MS, Co-Founder, My Style Matters; Karen Winkfield, MD, PhD, Radiation Oncologist and Executive Director, Meharry-Vanderbilt Alliance, Nashville. In memory of Joy Jenrette.
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Winship Cancer Institute Mini Grants Program, Atlanta, GA.
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All authors contributed to the study conception, design, analysis, and manuscript review and editing. Jill M. Binkley wrote the first manuscript and all authors contributed to and edited subsequent manuscripts. All authors read and approved final manuscript. In addition to these roles, Jill M. Binkley and Lauren E. McCullough led funding acquisition.
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Binkley, J.M., Gabram, S., Finley, J. et al. Racial disparity in breast cancer survivorship: themes from a series of four national healthcare provider live virtual forums. J Cancer Surviv 17, 1008–1016 (2023). https://doi.org/10.1007/s11764-023-01373-6
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DOI: https://doi.org/10.1007/s11764-023-01373-6