Interpreting intracorporeal landscapes: how patients visualize pathophysiology and utilize medical images in their understanding of chronic musculoskeletal illness

Moore, Andrew; Richardson, Jane; Bernard, Miriam; Sim, Julius

doi:10.1080/09638288.2018.1443162

Cited by 2 publications

(1 citation statement)

References 46 publications

(55 reference statements)

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“…Developing PGx communication based on how patients view their own bodies can support a patient's involvement in diagnostic events. 45 Research findings on patient word choices in response to PGx disclosure can add to prior efforts, such as stakeholder informed laboratory reports. 9,46 The requests clarification function is especially relevant to PGx communication, where recipients often appear to grasp half of the compound concept of drug-gene interactions, but not always both.…”

Section: Discussionmentioning

confidence: 99%

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

Meagher

Finn

Curtis

et al. 2021

Clinical Translational Sci

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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?

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Section: Discussionmentioning

confidence: 99%