Patient, Caregiver, and Oncologist Experiences With and Perceptions of Racial Bias and Discrimination in Cancer Care Delivery

Authors:
Alyssa A. Schatz National Comprehensive Cancer Network, Plymouth Meeting, Pennsylvania;

Search for other papers by Alyssa A. Schatz in
Current site
Google Scholar
PubMed
Close
 MSW
,
Keysha Brooks-Coley American Cancer Society Cancer Action Network, Washington, DC (at the time of survey development);

Search for other papers by Keysha Brooks-Coley in
Current site
Google Scholar
PubMed
Close
 MA
,
Elizabeth Harrington Public Opinion Strategies, Alexandria, Virginia; and

Search for other papers by Elizabeth Harrington in
Current site
Google Scholar
PubMed
Close
 BA
,
Mary Stober Murray Collaborative Action Networks, National Minority Quality Forum, Washington, DC.

Search for other papers by Mary Stober Murray in
Current site
Google Scholar
PubMed
Close
 MS
, and
Robert W. Carlson National Comprehensive Cancer Network, Plymouth Meeting, Pennsylvania;

Search for other papers by Robert W. Carlson in
Current site
Google Scholar
PubMed
Close
 MD
Restricted access

Background: Cancer prevention and treatment systems are significantly impacted by interpersonal, organizational, and structural and systemic racism. A wide body of research has found that racial disparities in access to guideline-adherent cancer care are pervasive throughout the United States and contributing factors include social determinants of health, insurance status, and bias and discrimination in care delivery. Although the existence of racial disparities in cancer care and outcomes is well established, there has been limited research exploring the patient and caregiver experience with bias and discrimination in cancer care. Methods: Two national surveys were conducted, one of patients and caregivers and one of oncologists. The surveys examined patient and caregiver experiences with and oncologist perceptions of racial disparities in cancer care. Results: The surveys found that when patients and caregivers were asked about negative care experiences, differences across race were observed. Patients and caregivers identifying as African American/Black (AA/B) or Hispanic/Latino (H/L) were more likely to report at least one negative care experience than patients and caregivers identifying as White (W). Patients who were AA/B or H/L were also more likely than W patients to report that the healthcare system treats people unfairly based on their racial or ethnic background and that racial bias occurs often or very often when a patient and doctor are of different racial/ethnic background. A slight majority of oncologists reported that the healthcare system treats people unfairly based on their racial or ethnic background. Conclusions: The survey results highlight a need for improved racial representation in the oncology professional workforce, improved implicit bias training, and improved clinical trial recruitment efforts.

Submitted January 21, 2022; final revision received May 27, 2022; accepted for publication June 30, 2022.

Author contributions: Development of survey questions: Schatz, Brooks-Coley. Survey design and launch: Harrington. Analysis of survey results: Harrington. Manuscript writing: Schatz, Stober Murray, Carlson. Manuscript revision: All authors.

Disclosures: The authors have disclosed that they have not received any financial consideration from any person or organization to support the preparation, analysis, results, or discussion of this article.

Funding: Research in this article was supported by AbbVie, Inc., bluebird bio, Inc., Bristol-Myers Squibb Company, Eli Lilly and Company, Merck & Co., Inc., MorphoSys AG, Pfizer Inc., Regeneron Pharmaceuticals, Inc., sanofi-aventis U.S., and Taiho Pharmaceuticals Co., Ltd. (A. Schatz). Research in this article was also supported by Genentech, Inc., GlaxoSmithKline, and Janssen Pharmaceutica Products, LP.

Correspondence: Alyssa A. Schatz, MSW, National Comprehensive Cancer Network, 3025 Chemical Road, Suite 100, Plymouth Meeting, PA 19462. Email: schatz@nccn.org

Supplementary Materials

    • Supplemental Materials (PDF 544 KB)
  • Collapse
  • Expand
  • 1.

    Esnaola NF, Ford ME. Racial differences and disparities in cancer care and outcomes: where’s the rub? Surg Oncol Clin N Am 2012;21:417437, viii.

  • 2.

    Fang P, He W, Gomez D, et al. Racial disparities in guideline-concordant cancer care and mortality in the United States. Adv Radiat Oncol 2018;3:221229.

  • 3.

    Erickson Foster H, Velasco JM, Hieken TJ. Adverse outcomes associated with noncompliance with melanoma treatment guidelines. Ann Surg Oncol 2008;15:23952402.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 4.

    Visser BC, Ma Y, Zak Y, et al. Failure to comply with NCCN guidelines for the management of pancreatic cancer compromises outcomes. HPB (Oxford) 2012;14:539547.

  • 5.

    Bristow RE, Powell MA, Al-Hammadi N, et al. Disparities in ovarian cancer care quality and survival according to race and socioeconomic status. J Natl Cancer Inst 2013;105:823832.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 6.

    Bristow RE, Chang J, Ziogas A, et al. High-volume ovarian cancer care: survival impact and disparities in access for advanced-stage disease. Gynecol Oncol 2014;132:403410.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 7.

    Mearis M, Shega JW, Knoebel RW. Does adherence to National Comprehensive Cancer Network guidelines improve pain-related outcomes? An evaluation of inpatient cancer pain management at an academic medical center. J Pain Symptom Manage 2014;48:451458.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 8.

    Schwam ZG, Sosa JA, Roman S, et al. Receipt of care discordant with practice guidelines is associated with compromised overall survival in nasopharyngeal carcinoma. Clin Oncol (R Coll Radiol) 2016;28:402409.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 9.

    Ubbaonu C, Chang J, Ziogas A, et al. Disparities in the receipt of National Comprehensive Cancer Network (NCCN) guideline adherent care in triple-negative breast cancer (TNBC) by race/ethnicity, socioeconomic status, and insurance type [abstract]. J Clin Oncol 2020;38(Suppl):Abstract 1080.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 10.

    Blom EF, Ten Haaf K, Arenberg DA, et al. Disparities in receiving guideline-concordant treatment for lung cancer in the United States. Ann Am Thorac Soc 2020;17:186194.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 11.

    DeSantis CE, Miller KD, Goding Sauer A, et al. Cancer statistics for African Americans, 2019. CA Cancer J Clin 2019;69:211233.

  • 12.

    Winkfield KM, Regnante JM, Miller-Sonet E, et al. Development of an actionable framework to address cancer care disparities in medically underserved populations in the United States: expert roundtable recommendations. JCO Oncol Pract 2021;17:e278293.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 13.

    Wang X, Huang Y, Li L, et al. Assessment of performance of the Gail model for predicting breast cancer risk: a systematic review and meta-analysis with trial sequential analysis. Breast Cancer Res 2018;20:18.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 14.

    Penner LA, Dovidio JF, Gonzalez R, et al. The effects of oncologist implicit racial bias in racially discordant oncology interactions. J Clin Oncol 2016;34:28742880.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 15.

    Smedley BD, Stith AY, Nelson AR, et al. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: The National Academies Press; 2003.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 16.

    Niranjan SJ, Martin MY, Fouad MN, et al. Bias and stereotyping among research and clinical professionals: perspectives on minority recruitment for oncology clinical trials. Cancer 2020;126:19581968.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 17.

    American Cancer Society. Cancer facts & figures 2020. Accessed August 8, 2022. Available at: https://www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/cancer-facts-figures-2020.html

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 18.

    AARP and National Alliance for Caregiving. Caregiving in the United States 2020. Washington, DC: AARP. May 2020. Accessed August 8, 2022. Available at: https://doi.org/10.26419/ppi.00103.001

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 19.

    United States Census Bureau. ACS demographic and housing estimates. Accessed August 8, 2022. Available at: https://data.census.gov/cedsci/table?q=age&g=0100000US%240400000&tid=ACSDP5Y2020.DP05

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 20.

    Towle E. Demographics of the US oncology workforce. J Oncol Pract 2016;12:99

  • 21.

    Professionally active specialist physicians by field. KFF website. Published February 7, 2022. Accessed September 13, 2022. Available at: https://www.kff.org/other/state-indicator/physicians-by-specialty-area/

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 22.

    American Society of Clinical Oncology. Facts & figures: diversity in oncology. Accessed July 28, 2021. Available at: https://www.asco.org/news-initiatives/current-initiatives/diversity-oncology-initiative/facts-figures

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 23.

    Singh AA. Handout from the Racial Healing Handbook: practical activities to help you challenge privilege, confront systemic racism, and engage in collective healing. Accessed August 8, 2022. Available at: https://nmaahc.si.edu/sites/default/files/downloads/resources/racialhealinghandbook_p87to94.pdf

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 24.

    FitzGerald C, Hurst S. Implicit bias in healthcare professionals: a systematic review. BMC Med Ethics 2017;18:19.

Metrics

All Time Past Year Past 30 Days
Abstract Views 0 0 0
Full Text Views 4381 1348 102
PDF Downloads 2160 593 45
EPUB Downloads 0 0 0