Brief Communication Pins and PNES: Systematic content analysis of Pinterest for information on psychogenic nonepileptic seizures (PNES) ☆ Anjali Dagar ⁎, Tatiana Falcone Department of Psychiatry, Cleveland Clinic, United States of America abstract article info Article history: Received 4 January 2019 Revised 11 January 2019 Accepted 11 January 2019 Available online xxxx 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 antiepilep- tic drugs (38.6%). Semiology of PNES was reported in 77.2% pins and two-thirds (66.6%) mentioned diagnostic pro- cedures. 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. Published by Elsevier Inc. Keywords: Psychogenic nonepileptic seizures PNES Pinterest Social media 1. Introduction Psychogenic nonepileptic seizures (PNES) are paroxysmal behav- ioral changes which clinically resemble epileptic seizures (ES) but lack the associated sudden, abnormal electrical activity in the brain. Recent estimates by International League Against Epilepsy (ILAE) PNES task force suggest its prevalence to be approximately 1/10 of that of epilepsy [1]. A higher preponderance of PNES among adult women is well established and they outnumber men in diagnosis by a ratio of 3:1 [2]. Several studies have estimated a significant delay in the diagnosis of PNES, ranging from 5 to 7 years [3,4]. It has also been noted that patients diagnosed as having PNES tend to disengage from medical services after the diagnosis is established [1]. The internet, including social media, is a popular and common means of communicating health information, and more than half of adult patient report searching the internet for health information [5,6]. Therefore, it can easily be construed that patients with PNES disengaged from medical service may turn to the internet for their health information needs. A majority of patients with PNES socialize daily on the internet [7]. Previous research has looked into the online representation of PNES on platforms like Google®, Twitter®, YouTube®, and Instagram® [8]. However, Pinterest®, the fourth largest online social media platform as per the 2018 Pew Research Center analysis [9], has not been analyzed for the available PNES related information. This analysis is critical be- cause 82% of Pinterest® users are women [10] and more than 40% of all women on the internet use it [9]. Pinterest is a visually oriented, so- cial media platform. Users “pin” (i.e., post) pictures and save them to their “board” (i.e., typically a collection of related posts, organized by a theme, and tailored to specific interests). People can use hashtags or keywords to search pins and boards created by others, as well as save pins or entire boards. This community-style sharing of pins facilitates the creation and identification of subcultures, hobbies, and interests. Be- cause of Pinterest's popularity and PNES's high incidence among women, the aim of our current study was to perform a systematic con- tent analysis of information available about PNES on Pinterest. 2. Material and methods We systematically mined Pinterest using various keywords including “psychogenic non(-)epileptic seizures”, “PNES”, “non(-)epileptic attack disorder”, “NEAD”, “psychogenic attack(s)”, “non(-)epileptic attack(s)”, “psychogenic non(-)epileptic attack(s)”, “pseudo(-)seizure(s)”, “non(-) epileptic seizure(s)”, “non(-)epileptic event(s)”, “stress seizure”, Epilepsy & Behavior xxx (xxxx) xxx ☆ Funding sources: This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. ⁎ Corresponding author at: Cleveland Clinic, 9500 Euclid Avenue, P57, Cleveland, OH 441195, United States of America. E-mail address: dagara@ccf.org (A. Dagar). YEBEH-06135; No of Pages 4 https://doi.org/10.1016/j.yebeh.2019.01.020 1525-5050/Published by Elsevier Inc. Contents lists available at ScienceDirect Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh Please cite this article as: A. Dagar and T. Falcone, Pins and PNES: Systematic content analysis of Pinterest for information on psychogenic nonepileptic ..., Epilepsy & Behavior, https://doi.org/10.1016/j.yebeh.2019.01.020