Lay understandings of drug‐gene interactions: The right medication, the right dose, at the right time, but what are the right words?

Abstract

As pharmacogenomic (PGx) testing increases in popularity, lay concepts of druggene interactions set the stage for shared decision making in precision medicine.Few studies explore what recipients of PGx results think is happening in their bodies when a drug-gene interaction is discovered. To characterize biobank participants' understanding of PGx research results, we conducted a focus group study, which took place after PGx variants conferring increased risk of dihydropyrimidine dehydrogenase (DPD) deficiency were disclosed to biobank contributors. DPD deficiency confers an increased risk of adverse reaction to commonly used cancer chemotherapeutics. Ten focus groups were conducted, ranging from two to eight participants. Fifty-four individuals participated in focus groups. A framework approach was used for descriptive and explanatory analysis. Descriptive themes included participants' efforts to make sense of PGx findings as they related to: (1) health implications, (2) drugs, and (3) genetics. Explanatory analysis supplied a functional framework of how participant word choices can perform different purposes in PGx communication. Results bear three main implications for PGx research-related disclosure. First, participants' use of various terms suggest participants generally understanding their PGx results, including how positive PGx results differ from positive disease susceptibility genetic results. Second, PGx disclosure in biobanking can involve participant conflation of drug-gene interactions with allergies or other types of medical reactions. Third, the functional framework suggests a need to move beyond a deficit model of genetic literacy in PGx communication. Together, findings provide an initial evidence base for supporting bidirectional expert-recipient PGx results communication. Study Highlights WHAT IS THE CURRENT KNOWLEDGE ON THE TOPIC? Pharmacogenomic (PGx) testing is often the hallmark of personalized medicine, offering the ability to tailor prescriptions to specific patients. Although prior | 723 LAY UNDERSTANDINGS OF DRUG-GENE INTERACTIONS biobank community advisory board (CAB) members in Jacksonville, FL, and Rochester, MN, reviewed an initial draft of a proposal to disclose PGx results to CAB feedback informed revised. Revised disclosure materials are published elsewhere. 12 How to cite this article: Meagher KM, Stuttgen Finn K, Curtis SH, et al. Lay understandings of drug-gene interactions: The right medication, the right dose, at the right time, but what are the right words?

Healthcare professionals' and consumers' knowledge, attitudes, perspectives, and education needs in oncology pharmacogenomics: A systematic review

“…Two studies – one by Najafzadeh et al 36 . and the other by Meagher et al 34 –. recruited participants from the general public with the former recruiting the highest number of participants ( n = 1096) across all 23 studies 36 .…”

“…described that simple wording should be used to report PGx results for consumers. Meagher et al 34 . developed a functional framework to support bidirectional communication between HCPs and consumers, where patients' word choices can be mapped to different communicative functions by HCPs, thus allowing HCPs to anticipate and bridge the terminology disconnect in clinical encounters and facilitate effective communication when discussing PGx results with patients.…”

“…After excluding publications from title and abstract screening ( n = 749), those remaining ( n = 86) underwent full text screening. The final number of publications included in this systematic review was 23, 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 as shown in Figure 1 . The majority of the studies met 80% or above of the criteria outlined in the MMAT, 18 indicating that the articles included in this review were of high quality (Table 1 ).…”

“…Only four out of the 15 studies included HCPs from both oncology and non-oncology specialties, 22,32,35,41 with the remaining 11 studies conducted with HCPs involved in cancer care. Two studies -one by Najafzadeh et al 36 and the other by Meagher et al 34 -recruited participants from the general public with the former recruiting the highest number of participants (n = 1096) across all 23 studies. 36 The qualitative study by Reis et al 39 had the lowest number of participants (n = 9).…”

“…Martens et al 32 described that simple wording should be used to report PGx results for consumers. Meagher et al 34…”