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

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".

Stakeholders' expectations of precision medicine: A qualitative study to identify areas of (mis)alignment

“…This knowledge can be used to identify and address any mismatches in this area and to improve communication between the involved parties, as a step in harmonizing PM implementation and supporting the multistakeholder collaboration. The negative effects of failing to obtain an alignment in stakeholder expectations and perspectives have already been highlighted 16,17 . The results of the stakeholder expectation matrix presented here will be further used to inform the FT3 program strategy and activities.…”

“…Similar attempts have been made to discover differences between various stakeholder groups in terms of perceptions and expectations regarding patient engagement in medicines development, 18 prognostic-based genomic testing, 16 barriers to optimal implementation of PM, 19 or the optimal components of value frameworks. 11 Results of these studies are in line with those of our stakeholder expectation matrix, highlighting the need for improved communication and collaboration between all stakeholders if harmonization of PM implementation is desired.…”

What Matters to Patients with Rheumatoid Arthritis When Facing Medical or Non-Medical Treatment Decisions?

“… 19 , 21 Furthermore, existing evidence supports our findings that patients prefer healthcare professionals who a) take comorbidity into account, b) have enough time for the consultation, and c) take the patient seriously in their choice of treatment. 22 , 23 Patients valued a shared approach to decision-making for choosing the right treatment option and emphasised the importance of enhanced communication with healthcare professionals. 24 Finally, global values were expressed, such as autonomy, self-image and intimacy.…”

Stakeholder Perspectives on Navigating Evidentiary and Decision Uncertainty in Precision Oncology

“…Reflecting this order, the decision-maker interview guide was developed and subsequently adapted for clinician participants. The decision-maker interview guide was informed by reviewing published interview and focus group studies and guides addressing expectations and preferences for genomics [28][29][30][31]. In alignment with our research objectives, we prioritized key discussion topics.…”

“…Analysis begun with each analyst (S.P., J.D. or S.C.) applying an in vivo coding approach, wherein direct, brief excerpts are extracted to highlight key phrases and topics [31]. Using an iterative process to generate an initial list of in vivo codes, analysts then met to discuss extracted text and initiate the process of grouping excerpts into major and minor coding categories.…”