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Barriers to Cancer Clinical Trial Participation Among American Indian and Alaska Native Tribal College Students

Authors

  • Debra Sprague PhD,

    1.  Center for Clinical and Epidemiological Research and Partnerships for Native Health, University of Washington, Seattle, Washington
    2.  Department of Medicine, University of Washington, Seattle, Washington
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  • Joan Russo PhD,

    1.  Department of Psychiatry and Behavioral Sciences, University of Washington, Seattle, Washington
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  • Donna L. LaVallie DO, MPH,

    1.  Center for Clinical and Epidemiological Research and Partnerships for Native Health, University of Washington, Seattle, Washington
    2.  Medical Education and Biomedical Informatics, University of Washington, Seattle, Washington
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  • Dedra Buchwald MD

    1.  Center for Clinical and Epidemiological Research and Partnerships for Native Health, University of Washington, Seattle, Washington
    2.  Department of Medicine, University of Washington, Seattle, Washington
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  • Funding: This work was supported by Native People for Cancer Control, a Community Networks Program funded by the National Cancer Institute (grant number U01 CA114642, D. Buchwald, Principal Investigator); a Biomedical and Health Informatics Training Program grant from the National Library of Medicine (grant number NIH 5 T15 LM007442, P. Tarczy-Hornoch, Principal Investigator); and the Institute for Translational Health Sciences, funded by the National Center for Research Resources (grant number UL1RR025014, M. Disis, Principal Investigator).

  • Acknowledgments: The authors wish to thank all of the tribal college partners who made the study possible: William Freeman, Dan Woods, Cheryl Long Feather, Chastity Clausen, Frank White, Tasheena Big Crane, Angela Blanchard, Rodney First Strike, Susan Hunter, Patrisha Lane, Leslie Morton, and Leah Runs Through. We are also grateful for the enthusiastic participation of tribal college students at our 3 campus sites. In addition, we thank the following University of Washington employees for their invaluable assistance: Steve Charles, Ursula Tsosie, and Johnny Mao, for assistance with data collection; and Raymond Harris, for editorial assistance. The contents of this manuscript are solely the responsibility of the authors and do not necessarily represent the official view of our funding organizations (the National Cancer Institute, the National Library of Medicine, and the National Center for Research Resources).

  • For further information, contact: Dedra Buchwald, MD, University of Washington, Box 359780, Seattle, WA 98195; e-mail: dedra@u.washington.edu.

Abstract

Purpose: American Indians and Alaska Natives (AIs/ANs) have some of the highest cancer-related mortality rates of all US racial and ethnic groups, but they are underrepresented in clinical trials. We sought to identify factors that influence willingness to participate in cancer clinical trials among AI/AN tribal college students, and to compare attitudes toward clinical trial participation among these students with attitudes among older AI/AN adults.

Methods: Questionnaire data from 489 AI/AN tribal college students were collected and analyzed along with previously collected data from 112 older AI/AN adults. We examined 10 factors that influenced participation in the tribal college sample, and using chi-square analysis and these 10 factors, we compared attitudes toward research participation among 3 groups defined by age: students younger than 40, students 40 and older, and nonstudent adults 40 and older.

Findings: About 80% of students were willing to participate if the study would lead to new treatments or help others with cancer in their community, the study doctor had experience treating AI/AN patients, and they received payment. Older nonstudent adults were less likely to participate on the basis of the doctor's expertise than were students (73% vs 84%, P = .007), or if the study was conducted 50 miles away (24% vs 41%, P= .001).

Conclusions: Finding high rates of willingness to participate is an important first step in increasing participation of AIs/ANs in clinical trials. More information is needed on whether these attitudes influence actual behavior when opportunities to participate become available.

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