Literacy assessment of preimplantation genetic patient education materials exceed national reading levels
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Literacy assessment of preimplantation genetic patient education materials exceed national reading levels Macy L. Early 1 & Priyanka Kumar 1 & Arik V. Marcell 1,2 Lydia H. Pecker 1,5,3
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Cathleen Lawson 1,3
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Mindy Christianson 1,3,4
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Received: 12 February 2020 / Accepted: 17 May 2020 # Springer Science+Business Media, LLC, part of Springer Nature 2020
Abstract Purpose In vitro fertilization with preimplantation genetic testing (IVF+PGT-M) reduces the risk of having a child affected by a heritable condition, yet only one-third of eligible patients are aware of this reproductive option. Access to education materials written at appropriate literacy levels could raise patients’ awareness, but there is a mismatch between patient reading ability and the literacy demand of most materials. This study aimed to systematically identify written education materials on IVF+PGT-M and evaluate their literacy levels. We hypothesized that materials would fail to meet standards set by the Joint Commission and Centers for Disease Control and Prevention (CDC). Methods To identify patient education materials about IVF+PGT-M from academic databases and public-facing sources, an environmental scan was performed. Materials were analyzed using three validated scales: Simple Measure of Gobbledygook, Patient Education Materials Assessment Tool, and Clear Communication Index. Results Seventeen patient education materials about IVF+PGT-M were identified from patient education databases, a consumer search engine, and professional organizations. The median reading level was 14.5 grade, median understandability was 74.2%, and median comprehensibility was 73.3%. Conclusions For most American adults, materials about IVF+PGT-M are not readable, understandable, or clear. The Joint Commission requires patient education materials be written at or below 5th grade reading level and the CDC recommends a 90% minimum score for comprehensibility. No evaluated material met these guidelines. Patient education materials that exceed average American literacy skills may perpetuate disparities in the utilization of IVF+PGT-M. Materials that communicate this complicated subject at an understandable level are needed. Keywords Preimplantation genetic testing . Patient education . Literacy demand . Environmental scan . Sickle cell disease Abbreviations AHRQ Agency for Healthcare Research and Quality CDC Centers for Disease Control and Prevention Dr. Pecker and Dr. Christianson contributed equally to this work. * Macy L. Early [email protected]
Index IVF PEM PEMAT PGD PGT-M PND SMOG
CDC Clear Communication Index In vitro fertilization Patient education material Patient Education Materials Assessment Tool Preimplantation genetic diagnosis Preimplantation genetic testing, monogenic Prenatal diagnosis Simple Measure of Gobbledygook
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Johns Hopkins University School of Medicine, Baltimore, MD, USA
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Division of General Pediatrics and Adolescent Medicine, Department of Pediatrics, Baltimore, MD, USA
Introduction
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Departme
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