Vaidya-Mathur Urmi, Myers Lorna, Laban-Grant Olgica, Lancman Marcelo, Lancman Martin, Jones Jace
Northeast Regional Epilepsy Group, USA.
Northeast Regional Epilepsy Group, USA.
Epilepsy Behav. 2016 Mar;56:59-65. doi: 10.1016/j.yebeh.2015.12.032. Epub 2016 Feb 2.
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.
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.
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%).
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.
本研究旨在描述精神性非癫痫性发作（PNES）成人患者的社交行为和偏好，包括自我报告的各种社交媒介（面对面和间接交流）的使用情况以及感知到的社交障碍。
对141例连续诊断为PNES且随后通过住院视频脑电图监测确诊的患者，在其首次门诊就诊当天进行问卷调查。该问卷旨在评估社交活动偏好、人际接触频率、社交媒体使用情况以及感知到的社交障碍。开展此项调查是为了更好地了解我们患者的社交行为和偏好，以便为我们健康计划中定制活动的未来发展提供依据。
与普遍认为PNES患者往往社交孤立的假设相反，我们的受访者报告称他们实际上社交联系颇为紧密（72.2%报告每天通过电话与朋友和家人交流，68.54%每周与亲属见面，65.28%每周与朋友见面，51.2%报告每天使用电脑进行社交）。脸书是首选的在线社交媒体。室内/单独活动最为常见，57.44%的人表示他们看电视/阅读/使用电脑。受访者认可的社交主要障碍是驾驶禁令和药物副作用。受访者对在线支持小组或教育项目（29.46%）、门诊支持小组（28.57%）和志愿服务（23.21%）表现出最大兴趣。
尽管有人推测社交孤立是PNES患者的一个重大问题，但报告显示患者相当积极地参与社交活动。社交活动的特点可能比最初认为的更为细微。未来在针对这组患者进行治疗干预时，根据年龄和个人偏好提供基于远程的选择以及面对面的治疗和支持选项可能会有所帮助。
