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Genomic Testing for Relapsed and Refractory Lymphoid Cancers: Understanding Patient Values

Author

Listed:
  • Sarah Costa

    (Canadian Centre for Applied Research in Cancer Control, BC Cancer)

  • Dean A. Regier

    (Canadian Centre for Applied Research in Cancer Control, BC Cancer
    University of British Columbia)

  • Adam J. N. Raymakers

    (Canadian Centre for Applied Research in Cancer Control, BC Cancer
    Simon Fraser University)

  • Samantha Pollard

    (Canadian Centre for Applied Research in Cancer Control, BC Cancer)

Abstract

Background New clinical genomic assays for lymphoid cancers allow for improved disease stratification and prognostication. At present, clinical implementation has been appropriately limited, owing to a paucity of evidence to support clinical and cost effectiveness. Understanding patients’ values for precision oncology under conditions of uncertainty can be used to inform priority-setting decisions. Objectives Our objective was to ascertain patients’ qualitative preferences and attitudes for prognostic-based genomic testing. Methods Individuals who were diagnosed with lymphoid cancer between 2000 and 2018 in British Columbia, Canada, were recruited to participate in one of three focus groups. A maximum variation sampling technique was used to capture a diversity of perspectives. A patient partner was involved in the development of the focus group topic guide and presentation materials. All sessions were audio recorded and analyzed using NVivo qualitative analysis software, version 12. Results In total, 26 participants took part in focus groups held between November 2018 and February 2019. Results illustrate qualitative preference heterogeneity for situations under which individuals would be willing to undergo genomic testing for relapsed lymphoid cancers. Preferences were highly contextualized within personal experiences with disease and treatment protocols. Hypothetical willingness to pay for testing was contingent on invasiveness, the potential for treatment de-escalation, and personal health benefit. Conclusions Patients are supportive and accepting of evidentiary uncertainty up until the point at which they are required to trade-off the potential for improved quality and length of life. Demand for precision medicine is contingent on expectations for benefit alongside an acknowledgment of the opportunity cost required for implementation. The clinical implementation of precision medicine will be required to address evidentiary uncertainty surrounding personal benefit while ensuring equitable access to emerging innovations.

Suggested Citation

  • Sarah Costa & Dean A. Regier & Adam J. N. Raymakers & Samantha Pollard, 2021. "Genomic Testing for Relapsed and Refractory Lymphoid Cancers: Understanding Patient Values," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 14(2), pages 187-196, March.
    • Handle: RePEc:spr:patien:v:14:y:2021:i:2:d:10.1007_s40271-020-00448-1
    DOI: 10.1007/s40271-020-00448-1
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    References listed on IDEAS

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    1. Caroline Vass & Dan Rigby & Katherine Payne, 2017. "The Role of Qualitative Research Methods in Discrete Choice Experiments," Medical Decision Making, , vol. 37(3), pages 298-313, April.
    2. Matthew Quaife & Fern Terris-Prestholt & Gian Luca Di Tanna & Peter Vickerman, 2018. "How well do discrete choice experiments predict health choices? A systematic review and meta-analysis of external validity," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 19(8), pages 1053-1066, November.
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