Reading materials on PNES


(Abst. 3.260 ), Dec 9, 2013

U. Vaidya, L. Myers, M. E. Lancman, S. Szuster, M. Lancman, E. Feoli

Rationale: The impact of PNES on the psychosocial functioning of patients can be significant. Quality of life studies suggest that patients with PNES report greater social isolation than the general population. This study examined the self-reported use of various socialization mediums (face to face and computer based) as well as perceived social barriers amongst adults diagnosed with PNES.

Methods: A questionnaire was given out to all patients in our practice on the day of their first visit assessing preferences in socialization practices, frequency of and perceived barriers tosocialization, and demographic data. The questionnaire was completed by 123 adult participants. A diagnosis of PNES was confirmed through video-EEG monitoring.

Results: Ninety-five respondents were female and mean age was 40.91 years. Responses revealed that 35% were single and 41.5% married. Nearly 40% lived alone or with their parents and 57% identified themselves as not well enough to work. The most commonly cited inhibiting factor for socialization was a driving restriction (20%) followed by medication side effects (14%) and social stigma (12%). As for social contact, 66% said they speak daily on the phone with friends and relatives, 51% see relatives weekly, 56% see friends weekly and 16% of those who work, use work to socialize. A large portion reported using a computer regularly (66%) and of those 62% used the computer to socialize. Of those 62%, up to 58% visited typical social media sites. Only 2% of this group visited epilepsy blogs and used epilepsy forums/chat rooms. No computer access and/or no computer skills were reported by 17%.

Conclusions: Results show that the most commonly cited barrier to socialization is a driving restriction and over 50% see themselves as too ill to work. However, many of respondents were socially active with friends/family either in person and/or via a computer despite the barriers identified by the participants. On-line socialization was remarkably high and nearly one quarter of respondents stated they would like on-line or face-to-face support groups if offered. These findings can help PNES treatment programs understand the socialization practices of the PNES population when designing models of social support.