What's out there for parents? A systematic review of online information about prenatal microarray and exome sequencing

Abstract

Objective:To identify what online patient information (presented in English) is available to parents about prenatal microarray (CMA) and exome sequencing (ES), and evaluate its content, quality, and readability.Method: Systematic searches (Google and Bing) were conducted, and websites were categorised according to their purpose. Websites categorised as patient information were included if they were: in English, directed at patients, or were a text, video, or online version of an information leaflet. Author-developed content checklists, the DISCERN Genetics tool, and readability tests (the Flesch Reading Ease Score, the Gunning Fog Index, and the Simple Measure of Gobbledygook Index) were then used to assess those sources of patient information.Results: Of the 665 websites screened, 18 met the criteria. A further 8 sources were found through a targeted search of professional organisations, resulting in 26 sources available for further evaluation. In general, this was found to be low in quality, omitted details recommended by national or international guidance, and was written at a level too advanced for average readers. Conclusion:Improvements should be made to the content, quality, and readability of online information so that it both reinforces and complements the discussions between parents and clinicians about testing options during pregnancy. Key points What's already known about this topic?� The Internet is an important source of information for parents during pregnancy � Little is known about the availability and standard of online information about newer prenatal genetic tests like chromosomal microarray (CMA) and prenatal exome sequencing (ES) Michelle Peter and Hannah McInnes-Dean contributed equally to this work.This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Implementing a rapid fetal exome sequencing service: What do parents and health professionals think?

“…However, several parents from our (highly educated) cohort commented that written information they received about pES was difficult to understand, signalling an urgent need to develop more accessible patient information. In other areas of prenatal testing, trials of web‐based decision aids have shown promise for enabling informed decisions 28,29 but to our knowledge no such tool currently exists for pES 30 …”

“…In other areas of prenatal testing, trials of web-based decision aids have shown promise for enabling informed decisions 28,29 but to our knowledge no such tool currently exists for pES. 30…”