Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 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.

PubMed Disclaimer

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

References

    1. Findlay I, Quirke P, Hall J, Rutherford A. Fluorescent PCR: a new technique for PGD of sex and single-gene defects. J Assist Reprod Genet. 1996;13(2):96–103. - PubMed
    1. Dreesen J, Destouni A, Kourlaba G, Degn B, Christensen Mette W, Carvalho F, et al. Evaluation of PCR-based preimplantation genetic diagnosis applied to monogenic diseases: a collaborative ESHRE PGD consortium study. Eur J Hum Genet. 2014;22(8):1012–1018. - PMC - PubMed
    1. Imudia AN, Plosker S. The past, present, and future of preimplantation genetic testing. Clin Lab Med. 2016;36(2):385–399. - PubMed
    1. Chang J, Boulet SL, Jeng G, Flowers L, Kissin DM. Outcomes of in vitro fertilization with preimplantation genetic diagnosis: an analysis of the United States Assisted Reproductive Technology Surveillance Data, 2011-2012. Fertil Steril. 2016;105(2):394–400. - PMC - PubMed
    1. Ginsburg ES, Baker VL, Racowsky C, Wantman E, Goldfarb J, Stern JE. Use of preimplantation genetic diagnosis and preimplantation genetic screening in the United States: a Society for Assisted Reproductive Technology Writing Group paper. Fertil Steril. 2011;96(4):865–868. - PubMed