Patient Perspectives Following Pharmacogenomics Results Disclosure in an Integrated Health System

Abstract

Participants reported value in both methods of PGx testing. Patient experiences, understanding and result utilization will play an important role in informing future development and implementation of PGx programs.

Pharmacogenomic (PGx) Counseling: Exploring Participant Questions about PGx Test Results

“…Consistent with existing literature on patient understanding of PGx test results, this study identified gaps in understanding of PGx test results even among a mostly highly educated study population [2][3][4]14]. Most participants requesting genetic counseling (54%) were seeking general assistance with understanding their PGx result reports, often alluding to uncertainty regarding whether they should or should not take a given medication in the future based on their results.…”

“…The notion of PGx results potentially leading people to conclude that any and all adverse events from a drug was due to their genetic make-up was noted by Lee et al [16] in their focus group study comparing the attitudes and perceptions of individuals exposed to PGx-guided care versus those of individuals with traditional care. On the other hand, some studies have found that individuals receiving PGx test results may be more medication compliant and willing to tolerate some side effects if PGx testing was utilized to assist with drug and dose selection [2,16,18,19]. Results from a study by Haga et al [14] lend further support to the hypothesis that PGx testing may improve patient adherence to medications.…”

“…Most participants requesting genetic counseling (54%) were seeking general assistance with understanding their PGx result reports, often alluding to uncertainty regarding whether they should or should not take a given medication in the future based on their results. The expectation for PGx test results to have the potential to inform physician prescribing decisions in a way that maximizes drug efficacy while limiting adverse reactions has been captured in several other studies, including studies of participants who have received PGx results [2,3,[14][15][16][17].…”

“…About 70% of participants in a study that surveyed patients who had PGx testing in either a PGx clinic or via a direct access in-home test reported feeling validated about their history of previous drug side effects or lack of efficacy following receipt of PGx test results [2]. Participants in a focus group study on patient, physician, and pharmacist opinions on PGx conducted by Frigon et al [15] commented on the potential for PGx test results to limit the experience of having a physician discount a patient's report of a drug side-effect as a "psychosomatic" event rather than a real drug side effect.…”

“…There is relatively little information published on the extent to which patients understand PGx test results. Lemke and colleagues [2] surveyed 57 patients from NorthShore University Health System in suburban Chicago, Illinois, USA, who had undergone a 19-gene panel PGx test through either a PGx clinic or by direct access in-home testing. Participants were mostly female (72%), Caucasian (98%), and educated (93% with some college or more).…”