Development of patient “profiles” to tailor counseling for incidental genomic sequencing results

Abstract

Guidelines recommend that providers engage patients in shared decision-making about receiving incidental results (IR) prior to genomic sequencing (GS), but this can be time-consuming, given the myriad of IR and variation in patients' preferences. We aimed to develop patient profiles to inform pre-test counseling for IR. We conducted semi-structured interviews with participants as a part of a randomized trial of the GenomicsADvISER.com, a decision aid for selecting IR. Interviews explored factors participants considered when deliberating over learning IR. Interviews were analyzed by thematic analysis and constant comparison. Participants were mostly female (28/31) and about half of them were over the age of 50 (16/31). We identified five patient profiles that reflect common contextual factors, attitudes, concerns, and perceived utility of IR. Information Enthusiasts self-identified as "planners" and valued learning most or all IR to enable planning and disease prevention because "knowledge is power". Concerned Individuals defined themselves as "anxious," and were reluctant to learn IR, anticipating negative psychological impacts from IR. Contemplators were discerning about the value and limitations of IR, weighing health benefits with the impacts of not being able to "un-know" information. Individuals of Advanced Life Stage did not consider IR relevant for themselves and primarily considered their implications for family members. Reassurance Seekers were reassured by previous negative genetic test results which shaped their expectations for receiving no IR: "hopefully [GS will] be negative, too. And then I can rest easy". These profiles could inform targeted counseling for IR by providing a framework to address common values, concerns. and misconceptions.

A comprehensive genomic reporting structure for communicating all clinically significant primary and secondary findings

“…The development of the genomic test report and consultation letters lacked a formal evaluation of communication and comprehension e cacy, as well as actionability from patients and non-genetics HCPs. The genomic test report and consultation letters may not be understandable for a patient, especially given the diversity of patients attitudes, concerns, and utility of SFs (Mighton et al 2019). In addition, the reports and letters were only designed to return sequence variants (SNVs and small insertions/deletions), so its format may not be suitable to return other variant types (e.g.…”

Stakeholder Perspectives on Navigating Evidentiary and Decision Uncertainty in Precision Oncology

“…During interviews, interviewers took minimal notes, and detailed field notes were documented immediately following each discussion. Following post-interview discussions among the research team, topic guides were modified throughout the interview process [32]. Initial interview topic guides are provided in Appendix A.…”

How aging of the global population is changing oncology

“…The decision-making style of each older cancer patient will vary, ranging from independent to passive [ 120 ], but emotion remains a significant factor [ 121 ] with reassurance a frequent need [ 122 ]. This hints at the influence of incrementalist thinking among patients with cancer, such that even a one-month survival gain persuades many to request more toxic treatments [ 123 ], presumably due to fear [ 124 ].…”