Information on epilepsy genetics available online for people with epilepsy and their families

Abstract

Objective

To evaluate and compare the types of information available online about epilepsy genetics to people with epilepsy and their family members on websites and social media platforms.

Methods

To identify websites, we used the search terms “epilepsy,” “genetic epilepsy,” and “epilepsy genetics” in Google, using Incognito mode. We selected the first ten English, non-sponsored websites for analysis. Websites were then classified according to their target audience (healthcare professionals vs. lay persons), and as epilepsy-specific or not and genetic-focused or not. On YouTube, X, Facebook, and TikTok, we searched using the terms “epilepsy” and “genetic epilepsy.” Posts were assessed for genetic-related themes, and the frequency of discussion was recorded.

Results

Among 31 websites assessed, only one did not discuss genetics in any capacity. However, many sources did not expand upon the potential role of genetics in epilepsy, and genetic testing was not frequently discussed. On social media, epilepsy genetics was more frequently discussed using a more specific search term, “genetic epilepsy” than using “epilepsy.” In posts that addressed genetics, the importance of genetic testing was the most frequent topic discussed. Other complexities, including offspring epilepsy risk, mode of inheritance, genetic heterogeneity, and variable expressivity, were very seldom discussed. Genetics was more frequently addressed in posts on YouTube and X than in those on Facebook or TikTok.

Significance

Online information about epilepsy genetics is difficult to encounter by chance; users must actively seek out this information. While information is available, accessibility and depth of the discussion is limited.