Patients’ Concerns About Receiving Preemptive Pharmacogenomic Testing: Results from a Large, Longitudinal Survey of RIGHT Study Participants

TL;DR

This study explores patient concerns about preemptive pharmacogenomic testing and finds that while overall concerns are low, insurance and cost worries are significant.

Contribution

The study provides new insights into longitudinal patient concerns about preemptive pharmacogenomic testing and how these concerns evolve after receiving results.

Findings

25.5% of participants were 'quite/extremely concerned' about insurance implications of PGx testing.

30.1% were 'quite/extremely concerned' about increased out-of-pocket costs for medications.

Initial concerns about understanding PGx results correlated with reported difficulty in comprehension after receiving results.

Abstract

Background: As more healthcare institutions consider providing preemptive pharmacogenomic (PGx) testing to greater numbers of their patients, it will be important to consider the potential concerns patients may have about the generation of preemptive PGx information. To date, few studies have examined the nature and incidence of patient concerns about preemptive PGx testing. Methods: We conducted a longitudinal survey study of 5000 patients receiving preemptive PGx testing in the Mayo Clinic RIGHT study. We assessed patient concerns regarding issues of data confidentiality, cost implications, comprehension of results, and potential disruption of pre-existing medication regimens. Participants were surveyed before and after they received PGx results from the RIGHT study. Results: We achieved 92.8% and 74.4% response rates on the pre- and post-results surveys, respectively. Participants had low levels of concern about PGx testing overall. However, 25.5% of participants were “quite/extremely concerned” about insurance implications, and 30.1% were “quite/extremely” concerned about increased out-of-pocket costs for prescription medications that might result from PGx testing. These same concerns were significantly reduced on the post-results survey. Patients who initially expressed concerns regarding their ability to understand PGx results were more likely to report having difficulty understanding results on the post-results survey. Conclusions: Our findings suggest that as healthcare institutions look to increase preemptive PGx screening, attention should be given to potential concerns patients may have around such testing. Educational interventions aimed at supporting patient understanding of PGx results and addressing potential concerns will be important elements of a successful PGx program.