title: Socialization characteristics in patients with psychogenic nonepileptic seizures (PNES).
abstract: OBJECTIVE
  The purpose of this study was to describe social behaviors and preferences in adults with psychogenic nonepileptic seizures (PNES) including self-reported use of various socialization mediums (face-to-face and indirect communication) as well as perceived social barriers.
  
  
  METHODS
  One hundred forty-one consecutive patients with a diagnosis of PNES that was later confirmed through inpatient video-EEG monitoring were administered a questionnaire on the day of their first outpatient appointment. The questionnaire was designed to assess preferences in socialization practices, frequency of interpersonal contact, use of social media, and perceived barriers to socialization. The survey was developed to gain a better understanding of the socialization behaviors and preferences of our patients for the future development of customized activities in our wellness program.
  
  
  RESULTS
  Contrary to prevalent assumptions that patients with PNES tend to be socially isolated, our responders reported that they were in fact quite socially connected (72.2% reported daily communication with friends and family via telephone, 68.54% saw relatives in person weekly, 65.28% saw friends weekly, and 51.2% reported using the computer daily to socialize). Facebook was the preferred online social media. Indoor/solitary activities were most common with 57.44% stating that they watch TV/read/use the computer. The primary barriers to socialization that respondents endorsed were driving prohibition and medication side effects. Respondents expressed the greatest interest in online support groups or educational programs (29.46%), office-based support groups (28.57%), and volunteering (23.21%).
  
  
  CONCLUSIONS
  Although it has been speculated that social isolation is a significant problem for patients with PNES, considerable participation in social activities was reported. Characteristics of socialization practices may be more nuanced than first believed. When addressing therapeutic interventions with this group of patients in the future, it might be beneficial to offer both distance-based options as well as face-to-face options for treatment and support depending on age and personal preference.
authors: Northeast Regional Epilepsy Group, USA. Electronic address: uvaidya@epilepsygroup.com.
authors: Urmi
authors: U
authors: Vaidya-Mathur
authors: Northeast Regional Epilepsy Group, USA.
authors: Lorna
authors: L
authors: Myers
authors: Northeast Regional Epilepsy Group, USA.
authors: Olgica
authors: O
authors: Laban-Grant
authors: Northeast Regional Epilepsy Group, USA.
authors: Marcelo
authors: M
authors: Lancman
authors: Northeast Regional Epilepsy Group, USA.
authors: Martin
authors: M
authors: Lancman
authors: Northeast Regional Epilepsy Group, USA.
authors: Jace
authors: J
authors: Jones
mesh_terms: D000328:Adult; D004569:Electroencephalography / Q000379:methods; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D012640:Seizures / Q000175:diagnosis* / Q000503:physiopathology / Q000523:psychology*; D012919:Social Behavior; D012934:Social Isolation / Q000523:psychology; D061108:Social Media / Q000706:statistics & numerical data*; D012951:Socialization; D011795:Surveys and Questionnaires
keywords: Nonepileptic; PNES; Psychogenic seizures; Social isolation; Social media; Socialization