Pins and PNES: Systematic content analysis of Pinterest for information on psychogenic nonepileptic seizures (PNES)

Pinterest is a visual search based, the fourth largest social networking site in the U.S. with 81% of its users being women. Because of Pinterest's popularity and the high incidence of psychogenic nonepileptic seizures (PNES) among women, the aim of our current study was to perform a thorough content analysis of information available about PNES on Pinterest. The systematic search of Pinterest using various PNES related keywords revealed 57 unique pins. This was followed by content analysis by two independent reviewers. Most (87.7%) pins included in the final analysis reported at least one factor indicative of PNES. Most common were the consistent association of PNES with emotional triggers (61.4%), history of current or remote abuse (57.9%), and seizure's unresponsiveness to antiepileptic drugs (38.6%). Semiology of PNES was reported in 77.2% pins and two-thirds (66.6%) mentioned diagnostic procedures. Psychogenic nonepileptic seizure treatment and prognosis were reported in 68.4% and 56.1% pins, respectively. Around one-third of pins were from academic resources. More than 80% of pins targeted lay people with the primary aim of education and awareness and used a neutral or positive tone. To our knowledge, even though most pins have scientifically sound information, this widely popular web-based resource seems to be underutilized by academia, healthcare workers, and stakeholders for the dissemination of awareness about PNES. •We present the first systematic content analysis of information available on Pinterest about PNES.•Majority of analyzed pins reported association of PNES to emotional triggers and history of abuse.•Only one-third of pins were from academic source.•More than 80% of pins had neutral to positive tone.•Pinterest is underutilized as a source of information dissemination about PNES.