Psychogenic non-epileptic seizures (PNES) on the Internet: Online representation of the disorder and frequency of search terms

AbstractPurposeThe nature of the symptoms associated with PNES require a multidisciplinary health team. There are too few professionals with an adequate understanding of PNES and therefore many are not able to provide patients with necessary information. In the age of the internet, it is not surprising that patients or caregivers might look for answers online. The purpose of this project was to investigate the online representation of PNES and search frequency for PNES and its associated terms.MethodsTo determine online representation, searches of: Google®, twitter®, YouTube®, and Instagram® for “PNES” and associated terms were conducted. Websites, tweets, and films were classified by host and exclusivity of information. PNES and associated terms search frequency was determined through Google Trends®.ResultsProfessional and patient sites exclusively about PNES were outnumbered by sites that only mentioned PNES in fewer than three posts. Patients tended to favor less traditional hosting options than did professionals. On twitter®, different keyword preferences were identified for professionals and patients. On YouTube® there was a substantial selection of videos of which 22 were professionally produced. Google Trends®, revealed the terms most commonly used to search for this topic were in order: (1) “PNES;” (2) “NEAD;” and (3) “pseudoseizure.”ConclusionA variety of professional and patient internet content about PNES can be found online. Professional sites offered accurate and empirically-validated information on the disorder and tended to use traditional hosting options. Future professional initiatives might consider novel hosting options and higher-frequency terms to reach their audience more effectively