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Development of a Plain Language Decision Support Tool for Cancer Clinical Trials: Blending Health Literacy, Academic Research, and Minority Patient Perspectives

  • Aisha T. LangfordEmail author
  • Sarah T. Hawley
  • Sue Stableford
  • Jamie L. Studts
  • Margaret M. Byrne
Article

Abstract

Despite the promise of clinical trials for improving cancer care, less than 5% of all cancer patients participate. Racial/ethnic minorities continue to be underrepresented in cancer clinical trials (CCTs). To address this gap, we developed a plain language, web-based decision support tool (CHOICES DST) in English and Spanish to support decision-making about CCTs among Blacks and Hispanics. In phase 1 (information collection), we conducted qualitative interviews with 45 cancer patients, completed a thorough literature review, and reviewed results from a telephone survey of 1100 cancer patients. In phase 2 (content generation), we created the first iteration of the CHOICES DST. In phase 3 (usability testing), we gathered user experience and acceptability data from a small sample of cancer survivors (n = 9). The Knowledge, Empowerment, and Values Clarification (KEV) model of decision-making was developed based on data from phase 1. The KEV model and other phase 1 data allowed us to create the CHOICES DST platform. Usability testing of the CHOICES DST showed highly favorable responses from users, satisfaction with content, ease of navigation, and a desire to use the tool. Qualitative results identified addressable points that would benefit from content and navigation-related alterations. The final version of the CHOICES DST was well received and understood by Black and Hispanic participants, and adheres to the mandates for plain language communication. This research provides preliminary data that CHOICES DST holds promise for improving knowledge of CCTs and potentially improving informed decision-making about participation in trials.

Keywords

Cancer survivors Hispanic Americans African Americans Decision making Patient participation Comprehension Choice behavior Clinical trials as topic Neoplasms Internet 

Notes

Acknowledgements

The authors would like to thank the following people and organizations for their assistance on this project: Pamela Burnett, President and Founder of the Beautiful Gate; Peggy Rios, Program Director of the Cancer Support Community Greater Miami; Adriana Cora, Executive Vice President of La Liga Contra el Cancer; and Martha Olivera (formerly of La Liga Contra el Cancer).

Funding

This research was supported by the National Cancer Institute and the National Institute of Minority Health and Disparities NIMHD (1RC2MD004784).

Compliance with Ethical Standards

Conflict of Interest

The authors declare that they have no competing interests.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in the study. This study was reviewed and approved by the Institutional Review Board at the University of Miami.

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Copyright information

© American Association for Cancer Education 2019

Authors and Affiliations

  1. 1.Department of Population HealthNew York University School of MedicineNew YorkUSA
  2. 2.Ann Arbor VA Center of Excellence in Health Services Research & DevelopmentUniversity of Michigan Departments of Internal Medicine and Health Management & PolicyAnn ArborUSA
  3. 3.Health Literacy, Plain Language, & Clear Health Communication ConsultantBrunswickUSA
  4. 4.Department of Behavioral ScienceUniversity of Kentucky College of MedicineLexingtonUSA
  5. 5.Department of Health Outcomes and BehaviorMoffitt Cancer CenterTampaUSA

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