"There's not enough studies": Views of black breast and ovarian cancer patients on research participation.

Tytuł:: "There's not enough studies": Views of black breast and ovarian cancer patients on research participation.
Autorzy:: Riggan KA; Biomedical Ethics Research Program, Mayo Clinic, Rochester, Minnesota, USA.
Rousseau A; Biomedical Ethics Research Program, Mayo Clinic, Rochester, Minnesota, USA.
Halyard M; Department of Radiation Oncology, Mayo Clinic, Phoenix, Arizona, USA.; Coalition of Blacks Against Breast Cancer, Phoenix, Arizona, USA.; ADVANCE Community Advisory Board, Phoenix, Arizona, USA.
James SE; Department of Radiation Oncology, Mayo Clinic, Phoenix, Arizona, USA.; Coalition of Blacks Against Breast Cancer, Phoenix, Arizona, USA.
Kelly M; Coalition of Blacks Against Breast Cancer, Phoenix, Arizona, USA.; ADVANCE Community Advisory Board, Phoenix, Arizona, USA.; Department of Community Engagement, Mayo Clinic, Scottsdale, Arizona, USA.
Phillips D; ADVANCE Community Advisory Board, Phoenix, Arizona, USA.; Department of Speech Pathology, Mayo Clinic, Phoenix, Arizona, USA.
Allyse MA; Biomedical Ethics Research Program, Mayo Clinic, Rochester, Minnesota, USA.; Department of Obstetrics & Gynecology, Mayo Clinic, Rochester, Minnesota, USA.
Źródło:: Cancer medicine [Cancer Med] 2023 Apr; Vol. 12 (7), pp. 8767-8776. Date of Electronic Publication: 2023 Jan 16.
Typ publikacji:: Journal Article; Research Support, N.I.H., Extramural; Research Support, Non-U.S. Gov't
Język:: English
Imprint Name(s):: Original Publication: [Malden, MA] : John Wiley & Sons Ltd., c2012-
MeSH Terms:: Ovarian Neoplasms*/epidemiology
Ovarian Neoplasms*/therapy
Trust*
Female ; Humans ; Black or African American ; Qualitative Research ; Breast Neoplasms ; Clinical Trials as Topic/psychology ; Research Subjects/psychology ; Patient Participation/psychology
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Grant Information:: P50 CA116201 United States CA NCI NIH HHS; P30 CA015083 United States CA NCI NIH HHS; P50 CA136393 United States CA NCI NIH HHS
Contributed Indexing:: Keywords: breast cancer; clinical cancer research; community outreach; women's cancer
Entry Date(s):: Date Created: 20230117 Date Completed: 20230510 Latest Revision: 20231117
Update Code:: 20240105
PubMed Central ID:: PMC10134334
DOI:: 10.1002/cam4.5622
PMID:: 36647342
: Czasopismo naukowe

Pełny tekst

Background: Black breast and ovarian cancer patients are underrepresented in clinical cancer trials disproportionate to the prevalence of these cancers in Black females. Historically, lower enrollment has been attributed to individualized factors, including medical mistrust, but more recently structural factors, including systemic racism, have received additional scrutiny. We interviewed Black women with a personal or family history of breast and ovarian cancer to understand their views and experiences related to research participation.
Methods: Qualitative interviews were conducted via telephone or video conference and transcribed verbatim. Transcripts were qualitatively analyzed for iterative themes related to the offer and participation in cancer clinical trials and research studies, impact on cancer care, and recommendations to increase enrollment of Black patients.
Results: Sixty-one Black women completed an interview. Participants expressed that Black women are underrepresented in cancer research, and that this negatively impacted their own care. Many cited past historical abuses, including the Tuskegee syphilis trial, as a potential factor for lower enrollment but suggested that lower enrollment was better understood in the context of the entirety of their healthcare experiences, including present-day examples of patient mistreatment or dismissal. Participants suggested that proactive community engagement, transparency, and increased representation of Black research team members were strategies likely to foster trust and bolster research participation.
Conclusion(s): Medical mistrust is only a partial factor in the lower participation of Black patients in cancer research. Researchers should implement the strategies identified by our participants to promote diverse enrollment and ensure that Black patients are included in future therapeutic advances.
(© 2023 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

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