Prenatal Genetic Screening and Diagnostic Testing: Assessing Patients' Knowledge, Clinical Experiences, and Utilized Resources in Comparison to Provider's Perceptions.

Pub Date : 2022-02-04 eCollection Date: 2022-01-01 DOI:10.1055/s-0041-1742236
Arlin Delgado, Jay Schulkin, Charles J Macri
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Abstract

Objective  This survey study aimed to assess patient knowledge, clinical resources, and utilized resources about genetic screening and diagnostic testing. Study Design  A one-time anonymous paper survey was distributed to 500 patients at a major urban obstetrics and gynecology department, and an online survey was sent to 229 providers. Descriptive statistics and chi-squared analyses were performed. Results  In all, 466 of 500 patient surveys were completed, and 441 analyzed (88.2% response rate). Among providers, 66 of 229 (29.0% response rate) responded. Patients were on average 32 years old, 27 weeks pregnant, and most often reported a graduate degree level of education (47.4%). Over 75% of patients reported accurate knowledge of basic genetic statements. Patients reported that discussing screening and diagnostic testing with their provider was significantly associated with properly defining screening and diagnostic testing ( p  < 0.001). Less than 10% of patients reported providers distributing web/video links, books, or any other resource; however, patients most often independently accessed web links (40.1%). Conclusion  Our findings suggest a positive impact from patient and provider discussions in office on patient knowledge and understanding. Discrepancies between educational resources distributed in the clinic and individually accessed resources highlight possible areas of change. Future work should evaluate and implement differing resources to increase patient knowledge.

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产前遗传筛查和诊断测试:评估患者的知识,临床经验,并利用资源比较提供者的看法。
目的了解患者对遗传筛查和诊断检测的知识、临床资源及资源利用情况。研究设计对某城市主要妇产科的500名患者进行一次性匿名纸质调查,并向229名服务提供者发送在线调查。进行描述性统计和卡方分析。结果500例患者共完成问卷调查466例,分析441例,有效率88.2%。在229家供应商中,有66家(回复率29.0%)做出了回应。患者平均年龄32岁,怀孕27周,最常报告研究生学历(47.4%)。超过75%的患者报告对基本的遗传陈述有准确的了解。患者报告说,与他们的医生讨论筛查和诊断测试与正确定义筛查和诊断测试显着相关(p结论我们的研究结果表明,患者和医生在办公室的讨论对患者的知识和理解有积极的影响。在诊所分配的教育资源和个人获取的资源之间的差异突出了可能发生变化的领域。未来的工作应评估和实施不同的资源,以增加患者的知识。
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