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Assessing the Impact of Simplified Language on a Patient-Facing Pharmacogenetic Report: A User Comprehension Study
Russell Amato1, Nicole M Del Toro-Pagan1, Harris Nguyen1
1Clinical Research & Development and Medical Affairs, Genomind, Inc., King of Prussia, PA 19406, USA.
Abstract:
Background: Pharmacogenetics (PGx) is the science of assessing how genetic variation affects drug efficacy, tolerability, and safety. While PGx is an emerging discipline which is becoming standard of care, many providers have misunderstandings about its utility. This is even more of a problem for patients, who may perceive that there is a single drug that is "right" for them. The primary objective of this study was to evaluate consumer comprehension of a newly developed patient-facing PGx report. Methods: In this study, we adapted a commercial pharmacogenetic test (Genomind Professional PGx) into a report intended to be more comprehensible to the consumer. The initial translation of the clinical terminology used in the PGx report, into lay terminology was conducted by PharmDs and PhDs who have collectively provided over 20,000 PGx consults to date. These reports were then evaluated with readability scoring software to ensure each translation's complexity remained ≤8th-grade reading level. A total of 107 participants were recruited to conduct the initial analysis with a goal of achieving a 90% comprehension rate using the Genomind consumer comprehension survey. These participants were also given a modified Minnesota Assessment of Pharmacogenomic Literacy (MAPL™) both before and after the Genomind comprehension survey to assess overall PGx literacy. Results: Ninety-eight (98) out of 107 research participants scored one or zero questions incorrectly, translating to >90% comprehension score on the Genomind consumer comprehension survey. These participants also demonstrated a significant increase in overall pharmacogenetic literacy, as assessed by MAPL after viewing the consumer report and survey. Conclusions: This study found that translating pharmacogenetic test results into lay language may provide individuals with a greater understanding of how their DNA may impact prescribed medications.
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