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Qualitative Methods for Refining a Web-Based Educational Tool for Patients Focused on Inherited Cancer Predisposition

Abstract

To address the increasing demand for inherited cancer genetic testing, we developed and evaluated a web-based educational tool to streamline genetic counseling (GC). Consented patients viewed the initial prototype containing core content (Version 1-Core) and provided feedback through three open-ended survey questions. Additional data were collected through individual interviews from a subgroup who viewed an enhanced version (Version 1-Enhanced), consisting of the same core content and additional optional content. Data were coded to synthesize most commonly repeated themes and conceptualize action items to guide refinement strategies. Of 305 participants, 80 responded to open-ended survey questions to suggest refinement strategies, after viewing Version 1-Core. Interviews with a subgroup of seven participants, who viewed Version 1-Enhanced, provided additional feedback. Of 11 unique action items identified, five overlapped across datasets (provide instructions, simplify language, improve visuals, embed knowledge questions with explanations, include more insurance-related information), three were identified only through open-ended survey data (incorporate automatic progression, clarify test result information, increase interactive content), and three were identified only through interviews (ensure core content is viewed, incorporate progress bar, feature embedded optional content at the end of the tool). Ten action items aligned with underlying tool objectives to provide an interactive online pre-test GC solution and were used to guide refinement strategies. Our results demonstrate the value of rigorous qualitative data collection and analysis in health research and the use of the self-directed learning framework and eHealth strategies to leverage technology in scaling up and innovating the delivery of pre-test GC for inherited cancer.

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Acknowledgments

We thank Courtney Lewis for her efforts in the initial prototype of the tool, and Joy Kechik and other genetic counseling students at the University of South Florida, Genetic Counseling Graduate Program. We thank Carlos Montoya and the University of South Florida, College of Public Health ETA office, for technical assistance with the software used in the development of the tool. We thank the clinical team from the Vanderbilt Hereditary Cancer Clinic.

Funding

This work was supported by funding from Ingram Professorship (ID0EQ6AG3405), Kleberg Foundation (ID0ESDBG3406), and Vanderbilt Genetic Institute Departmental Funds (ID0EUHBG3407). This project was also supported by CTSA (award number UL1 TR002243) from the National Center for Advancing Translational Sciences. Its contents are solely the responsibility of the authors and do not necessarily represent official views of the National Center for Advancing Translational Sciences or the NIH.

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Contributions

Study conception and design: Deborah Cragun and Tuya Pal. Project administration and data collection: Ann Tezak, Brenda Zuniga, and Anne Weidner. Qualitative coding and analysis: Ann Tezak and Brenda Zuniga. Funding acquisition: Tuya Pal. Writing—original draft preparation: Ann Tezak and Tuya Pal. Writing—review and editing: All authors.

Corresponding author

Correspondence to Tuya Pal.

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The authors declare that they have no conflict of interest.

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Supplementary Information

ESM 1

Interview Guide: The interview guide, used for conducting seven in-depth interviews with participants who viewed Vesion 1-Enhanced, reflects an introductory script followed by open-ended interview questions structured with probes that seek participant input on the following domains: 1) impressions of the tool’s overall content; 2) visual and design appeal; 3) confidence in relaying information learned; 4) suggestions for improvement and/or alternative ways of communicating topics; and 5) functional barriers for the participants and anticipated audience. The guide ends with a closing script and section for interviewer notes. (PDF 1100 kb)

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Tezak, A.L., Zuniga, B., Weidner, A. et al. Qualitative Methods for Refining a Web-Based Educational Tool for Patients Focused on Inherited Cancer Predisposition. J Canc Educ (2021). https://doi.org/10.1007/s13187-020-01929-5

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Keywords

  • Pre-test genetic counseling
  • Inherited cancer
  • Education
  • Care delivery