Russell Amato, Nicole M Del Toro-Pagan, Harris Nguyen, Jordan Plummer, Katie Pizzolato, David Krause, Daniel Dowd
{"title":"Assessing the Impact of Simplified Language on a Patient-Facing Pharmacogenetic Report: A User Comprehension Study.","authors":"Russell Amato, Nicole M Del Toro-Pagan, Harris Nguyen, Jordan Plummer, Katie Pizzolato, David Krause, Daniel Dowd","doi":"10.3390/jpm15060247","DOIUrl":null,"url":null,"abstract":"<p><p><b>Background:</b> 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. <b>Methods:</b> 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. <b>Results:</b> 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. <b>Conclusions:</b> 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.</p>","PeriodicalId":16722,"journal":{"name":"Journal of Personalized Medicine","volume":"15 6","pages":""},"PeriodicalIF":3.0000,"publicationDate":"2025-06-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12194072/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Personalized Medicine","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.3390/jpm15060247","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
引用次数: 0
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.
背景:药物遗传学(PGx)是一门评估遗传变异如何影响药物疗效、耐受性和安全性的科学。虽然PGx是一门新兴学科,正在成为标准护理,但许多提供者对其效用存在误解。这对病人来说是一个更大的问题,他们可能认为有一种药物对他们“合适”。本研究的主要目的是评估消费者对新开发的面向患者的PGx报告的理解程度。方法:在这项研究中,我们将一项商业化的药物遗传学测试(Genomind Professional PGx)改编成一份报告,旨在让消费者更容易理解。将PGx报告中使用的临床术语翻译成非专业术语是由药学博士和博士们进行的,他们迄今为止总共提供了超过20,000次PGx咨询。然后使用可读性评分软件对这些报告进行评估,以确保每个翻译的复杂性保持在≤8年级的阅读水平。总共招募了107名参与者来进行初步分析,目标是通过Genomind消费者理解调查达到90%的理解率。在基因组学理解调查前后,这些参与者还接受了修改后的明尼苏达药物基因组学素养评估(MAPL™),以评估总体PGx素养。结果:107名研究参与者中有98人答对了1个或0个问题,在Genomind消费者理解调查中,他们的理解得分为90分。在查看消费者报告和调查后,由MAPL评估,这些参与者也表现出总体药理学知识的显着增加。结论:本研究发现,将药物遗传学测试结果翻译成外行语言可以让个人更好地了解他们的DNA如何影响处方药。
期刊介绍:
Journal of Personalized Medicine (JPM; ISSN 2075-4426) is an international, open access journal aimed at bringing all aspects of personalized medicine to one platform. JPM publishes cutting edge, innovative preclinical and translational scientific research and technologies related to personalized medicine (e.g., pharmacogenomics/proteomics, systems biology). JPM recognizes that personalized medicine—the assessment of genetic, environmental and host factors that cause variability of individuals—is a challenging, transdisciplinary topic that requires discussions from a range of experts. For a comprehensive perspective of personalized medicine, JPM aims to integrate expertise from the molecular and translational sciences, therapeutics and diagnostics, as well as discussions of regulatory, social, ethical and policy aspects. We provide a forum to bring together academic and clinical researchers, biotechnology, diagnostic and pharmaceutical companies, health professionals, regulatory and ethical experts, and government and regulatory authorities.