Informal prenatal genetic screening education: What can you learn from Google and YouTube?

Abstract

Purpose

The goal of this article is to explore what online education and decision support tools are freely available to patients about prenatal screening.

Methods

We (1) conducted an environmental scan using Google Trends to identify and evaluate prenatal screening search terms, (2) created a list of websites and YouTube videos that would be easily accessed by a searcher, and (3) characterized the information within those websites and videos, including an examination of their qualities as a decision support tool and a readability analysis.

Results

Fifty websites, containing 62 unique educational resources, and 39 YouTube videos were analyzed. The websites were primarily educational, although the education was provided by a range of sources, including non-profit and for-profit organizations, universities, and governments (ie, public health departments). Readability scores of Patient Education Materials Assessment Tool for Printable Materials for the sites ranged from 50% to 92%, with a median score of 74%. Two of the websites we evaluated met all of the limited decision support standards we applied; 4 of the websites included patient stories or experiences, and 8 included some element of values clarification. Videos were more likely to include values clarification.

Conclusion

The information available to patients online is variable. Although most is balanced and informative, much is difficult to read and missing key decision-making factors. Health care providers should work with patients to ensure they have basic comprehension of the prenatal genetic screening materials, possible result outcomes, and expected steps following a positive screening result.