A Model of Cancer Clinical Trial Decision-making Informed by African-American Cancer Patients

Jennifer A. Wenzel; Olive Mbah; Jiayun Xu; Gyasi Moscou-Jackson; Haneefa Saleem; Kwame Sakyi; Jean G. Ford

doi:10.1007/s40615-014-0063-x

A Model of Cancer Clinical Trial Decision-making Informed by African-American Cancer Patients

Jennifer A. Wenzel, Olive Mbah, Jiayun Xu, Gyasi Moscou-Jackson, Haneefa Saleem, Kwame Sakyi, Jean G. Ford

Research output: Contribution to journal › Article › peer-review

6 Scopus citations

Abstract

BACKGROUND: Clinical trials are critical to advancing cancer treatment. Minority populations are underrepresented among trial participants, and there is limited understanding of their decision-making process and key determinants of decision outcomes regarding trial participation.

METHODS: To understand research decision-making among clinical trial-eligible African-American cancer patients at Johns Hopkins, we conducted seven focus groups (n=32) with trial-offered patients ≥ 18 years diagnosed with lung, breast, prostate, or colorectal cancer ≤ 5 years. Three "acceptor" and four "decliner" focus groups were conducted. Questions addressed: attitudes towards clinical trials, reasons for accepting or declining participation, and recommendations to improve minority recruitment and enrollment. Data were transcribed and analyzed using traditional approaches to content and thematic analysis in NVivo 9.0. Data coding resulted in themes that supported model construction.

RESULTS: Participant experiences revealed the following themes when describing the decision-making process: Information gathering, Intrapersonal perspectives, and Interpersonal influences. Decision outcomes included the presence or absence of decision regret and satisfaction. From these themes, we generated a Model of Cancer Clinical Trial Decision-making.

CONCLUSION: Our model should be tested in hypothesis-driven research to elucidate factors and processes influencing decision balance and outcomes of trial-related decision-making. The model should also be tested in other disparities populations and for diagnoses other than cancer.

Original language	English (US)
Pages (from-to)	192-199
Number of pages	8
Journal	Journal of Racial and Ethnic Health Disparities
Volume	2
Issue number	2
DOIs	https://doi.org/10.1007/s40615-014-0063-x
State	Published - Jun 1 2015

Keywords

African-Americans
Cancer disparities
Clinical trials
Decision balance
Decision regret

ASJC Scopus subject areas

Health(social science)
Anthropology
Sociology and Political Science
Health Policy
Public Health, Environmental and Occupational Health

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10.1007/s40615-014-0063-x

Cite this

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title = "A Model of Cancer Clinical Trial Decision-making Informed by African-American Cancer Patients",

abstract = "BACKGROUND: Clinical trials are critical to advancing cancer treatment. Minority populations are underrepresented among trial participants, and there is limited understanding of their decision-making process and key determinants of decision outcomes regarding trial participation.METHODS: To understand research decision-making among clinical trial-eligible African-American cancer patients at Johns Hopkins, we conducted seven focus groups (n=32) with trial-offered patients ≥ 18 years diagnosed with lung, breast, prostate, or colorectal cancer ≤ 5 years. Three {"}acceptor{"} and four {"}decliner{"} focus groups were conducted. Questions addressed: attitudes towards clinical trials, reasons for accepting or declining participation, and recommendations to improve minority recruitment and enrollment. Data were transcribed and analyzed using traditional approaches to content and thematic analysis in NVivo 9.0. Data coding resulted in themes that supported model construction.RESULTS: Participant experiences revealed the following themes when describing the decision-making process: Information gathering, Intrapersonal perspectives, and Interpersonal influences. Decision outcomes included the presence or absence of decision regret and satisfaction. From these themes, we generated a Model of Cancer Clinical Trial Decision-making.CONCLUSION: Our model should be tested in hypothesis-driven research to elucidate factors and processes influencing decision balance and outcomes of trial-related decision-making. The model should also be tested in other disparities populations and for diagnoses other than cancer.",

keywords = "African-Americans, Cancer disparities, Clinical trials, Decision balance, Decision regret",

author = "Wenzel, {Jennifer A.} and Olive Mbah and Jiayun Xu and Gyasi Moscou-Jackson and Haneefa Saleem and Kwame Sakyi and Ford, {Jean G.}",

note = "Funding Information: The authors thank Syed-Rafay Ahmed and Charlene Ndi for their contribution to the study/manuscript review. We also thank all study staff and our study participants. Support:Research reported in this publication was supported by the National Institute on Minority Health and Health Disparities of the National Institutes of Health under Award number U24MD006970. Dr. Wenzel is supported by the American Cancer Society MRSGT-09-152-01-CPPB. Dr. Wenzel and Ms. Mbah are supported in part by the Community Networks Program Center (CNPC){\textquoteright}s grant, U54CA153710. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health or the American Cancer Society. All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study. ",

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doi = "10.1007/s40615-014-0063-x",

language = "English (US)",

volume = "2",

pages = "192--199",

journal = "Journal of Racial and Ethnic Health Disparities",

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T1 - A Model of Cancer Clinical Trial Decision-making Informed by African-American Cancer Patients

AU - Wenzel, Jennifer A.

AU - Mbah, Olive

AU - Xu, Jiayun

AU - Moscou-Jackson, Gyasi

AU - Saleem, Haneefa

AU - Sakyi, Kwame

AU - Ford, Jean G.

N1 - Funding Information: The authors thank Syed-Rafay Ahmed and Charlene Ndi for their contribution to the study/manuscript review. We also thank all study staff and our study participants. Support:Research reported in this publication was supported by the National Institute on Minority Health and Health Disparities of the National Institutes of Health under Award number U24MD006970. Dr. Wenzel is supported by the American Cancer Society MRSGT-09-152-01-CPPB. Dr. Wenzel and Ms. Mbah are supported in part by the Community Networks Program Center (CNPC)’s grant, U54CA153710. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health or the American Cancer Society. All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.

PY - 2015/6/1

Y1 - 2015/6/1

N2 - BACKGROUND: Clinical trials are critical to advancing cancer treatment. Minority populations are underrepresented among trial participants, and there is limited understanding of their decision-making process and key determinants of decision outcomes regarding trial participation.METHODS: To understand research decision-making among clinical trial-eligible African-American cancer patients at Johns Hopkins, we conducted seven focus groups (n=32) with trial-offered patients ≥ 18 years diagnosed with lung, breast, prostate, or colorectal cancer ≤ 5 years. Three "acceptor" and four "decliner" focus groups were conducted. Questions addressed: attitudes towards clinical trials, reasons for accepting or declining participation, and recommendations to improve minority recruitment and enrollment. Data were transcribed and analyzed using traditional approaches to content and thematic analysis in NVivo 9.0. Data coding resulted in themes that supported model construction.RESULTS: Participant experiences revealed the following themes when describing the decision-making process: Information gathering, Intrapersonal perspectives, and Interpersonal influences. Decision outcomes included the presence or absence of decision regret and satisfaction. From these themes, we generated a Model of Cancer Clinical Trial Decision-making.CONCLUSION: Our model should be tested in hypothesis-driven research to elucidate factors and processes influencing decision balance and outcomes of trial-related decision-making. The model should also be tested in other disparities populations and for diagnoses other than cancer.

AB - BACKGROUND: Clinical trials are critical to advancing cancer treatment. Minority populations are underrepresented among trial participants, and there is limited understanding of their decision-making process and key determinants of decision outcomes regarding trial participation.METHODS: To understand research decision-making among clinical trial-eligible African-American cancer patients at Johns Hopkins, we conducted seven focus groups (n=32) with trial-offered patients ≥ 18 years diagnosed with lung, breast, prostate, or colorectal cancer ≤ 5 years. Three "acceptor" and four "decliner" focus groups were conducted. Questions addressed: attitudes towards clinical trials, reasons for accepting or declining participation, and recommendations to improve minority recruitment and enrollment. Data were transcribed and analyzed using traditional approaches to content and thematic analysis in NVivo 9.0. Data coding resulted in themes that supported model construction.RESULTS: Participant experiences revealed the following themes when describing the decision-making process: Information gathering, Intrapersonal perspectives, and Interpersonal influences. Decision outcomes included the presence or absence of decision regret and satisfaction. From these themes, we generated a Model of Cancer Clinical Trial Decision-making.CONCLUSION: Our model should be tested in hypothesis-driven research to elucidate factors and processes influencing decision balance and outcomes of trial-related decision-making. The model should also be tested in other disparities populations and for diagnoses other than cancer.

KW - African-Americans

KW - Cancer disparities

KW - Clinical trials

KW - Decision balance

KW - Decision regret

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A Model of Cancer Clinical Trial Decision-making Informed by African-American Cancer Patients

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