Genomic Testing for Relapsed and Refractory Lymphoid Cancers: Understanding Patient Values
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ORIGINAL RESEARCH ARTICLE
Genomic Testing for Relapsed and Refractory Lymphoid Cancers: Understanding Patient Values Sarah Costa1 · Dean A. Regier1,2 · Adam J. N. Raymakers1,3 · Samantha Pollard1
© The Author(s) 2020
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.
This article is part of the topical collection “Formative qualitative evidence for health preference and outcomes research”. Electronic supplementary material The online version of this article (https://doi.org/10.1007/s40271-020-00448-1) contains supplementary material, which is available to authorized users. * Samantha Pollard [email protected] 1
Canadian Centre for Applied Research in Cancer Control, BC Cancer, Vancouver, BC, Canada
2
School of Population and Public Health, University of British Columbia, Vancouver, BC, Canada
3
Faculty of Health Sciences, Simon Fraser University, Vancouver, BC, Canada
1 Introduction Lymphoid cancers are the fifth most commonly diagnosed group of cancers in Canada, with approximately 11,000 people expected t
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