What's out there for parents? A systematic review of online information about prenatal microarray and exome sequencing. (7th November 2021)

• Record Type: Journal Article
• Authors: Peter, Michelle; McInnes‐Dean, Hannah; Fisher, Jane; Tapon, Dagmar; Chitty, Lyn S.; Hill, Melissa
• Is Part Of: Prenatal diagnosis. Volume 42:Number 1(2022)
• Page Start: 97
• Page End: 108
• Publication Date: 2021-11-07
• Subjects: Prenatal diagnosis -- Periodicals; Fetus -- Diseases -- Diagnosis -- Periodicals; Electronic journals; 618.32075
• DOI: 10.1002/pd.6066
• Languages: English
• ISSNs: 0197-3851

Abstract

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) What does this study add? Our results revealed limited online information aimed at parents about CMA and ES The information we did identify was lacking the details recommended by professional guidelines, had low quality scores, and was written at an advanced level Improvements to online information for parents are needed to support informed decision‐making regarding prenatal genetic tests