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. 2020 Aug;37(8):1913-1922.
doi: 10.1007/s10815-020-01837-z. Epub 2020 May 29.

Literacy assessment of preimplantation genetic patient education materials exceed national reading levels

Macy L Early  1 , Priyanka Kumar  2 , Arik V Marcell  2   3 , Cathleen Lawson  2   4 , Mindy Christianson  2   4   5 , Lydia H Pecker  2   4   6
Affiliations

Literacy assessment of preimplantation genetic patient education materials exceed national reading levels

Macy L Early et al. J Assist Reprod Genet. 2020 Aug.

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: Environmental scan; Literacy demand; Patient education; Preimplantation genetic testing; Sickle cell disease.

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Conflict of interest statement

LHP is supported by an American Society of Hematology Clinical Scholars Award and the Johns Hopkins University Building Interdisciplinary Research Careers in Women’s Health Program. The authors report no conflicts of interest.

Figures

Fig. 1
Fig. 1
Composite performance on questions for PEMAT (P) and Index (I) scales
See this image and copyright information in PMC

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