Department of Psychiatry and of Neurology, Neurological & Behavioral Outcomes Center, Case Western Reserve University School of Medicine and University Hospitals Case Medical Center, Cleveland, OH, USA.
Department of Neurology, Carver College of Medicine and Iowa Health Care, Iowa City, IA, USA.
Epilepsy Behav. 2024 Nov;160:110025. doi: 10.1016/j.yebeh.2024.110025. Epub 2024 Sep 16.
Stigma is a pervasive barrier for people living with epilepsy (PLWE) and can have substantial negative effects. This study evaluated clinical correlates of perceived stigma in a research sample of PLWE considered to be at high risk due to frequent seizures or other negative health events.
Analyses were derived from baseline data from an ongoing Centers for Disease Control and Prevention (CDC)-funded randomized controlled trial (RCT) testing an epilepsy self-management approach. Standardized measures assessed socio-demographics, perceived epilepsy stigma, epilepsy-related self-efficacy, epilepsy self-management competency, health literacy, depressive symptom severity, functional status, social support and epilepsy-related quality of life.
There were 160 individuals, mean age of 39.4, (Standard deviation/SD=12.2) enrolled in the RCT, 107 (66.9 %) women, with a mean age of epilepsy onset of 23.9 (SD 14.0) years. The mean seizure frequency in the prior 30 days was 6.4 (SD 21.2). Individual factors correlated with worse perceived stigma were not being married or cohabiting with someone (p = 0.016), lower social support (p < 0.0001), lower self-efficacy (p < 0.0001), and lower functional status for both physical health (p = 0.018) and mental health (p < 0.0001). Perceived stigma was associated with worse depressive symptom severity (p < 0.0001). Multivariable linear regression found significant independent associations between stigma and lower self-efficacy (β -0.05; p = 0.0096), lower social support (β -0.27; p = 2.4x10, and greater depression severity (β 0.6; p = 5.8x10).
Perceived epilepsy stigma was positively correlated with depression severity and negatively correlated with social support and self-efficacy. Providers caring for PLWE may help reduce epilepsy stigma by screening for and treating depression, encouraging supportive social relationships, and providing epilepsy self-management support. Awareness of epilepsy stigma and associated factors may help reduce some of the hidden burden borne by PLWE.
污名化是癫痫患者（PLWE）普遍面临的障碍，可能会产生严重的负面影响。本研究评估了因频繁发作或其他负面健康事件而被认为处于高风险的 PLWE 研究样本中，感知到的污名与哪些临床因素相关。
本分析基于正在进行的疾病控制与预防中心（CDC）资助的随机对照试验（RCT）的基线数据得出，该 RCT 正在测试一种癫痫自我管理方法。使用标准化量表评估了社会人口统计学因素、感知到的癫痫污名、癫痫相关自我效能感、癫痫自我管理能力、健康素养、抑郁症状严重程度、功能状态、社会支持和癫痫相关生活质量。
共纳入 160 名参与者，平均年龄 39.4 岁（标准差/SD=12.2），107 名（66.9%）为女性，癫痫发病年龄平均为 23.9 岁（SD 14.0 岁）。过去 30 天的平均发作频率为 6.4 次（SD 21.2 次）。与感知到的污名更严重相关的个体因素包括未婚或与他人同居（p=0.016）、社会支持度较低（p<0.0001）、自我效能感较低（p<0.0001），以及身体和心理健康的功能状态较低（p=0.018 和 p<0.0001）。感知到的污名与更严重的抑郁症状严重程度相关（p<0.0001）。多元线性回归发现，污名与自我效能感较低（β-0.05；p=0.0096）、社会支持度较低（β-0.27；p=2.4x10-3）和抑郁症状严重程度较高（β0.6；p=5.8x10-3）之间存在显著的独立关联。
感知到的癫痫污名与抑郁严重程度呈正相关，与社会支持和自我效能感呈负相关。照顾 PLWE 的医护人员可以通过筛查和治疗抑郁、鼓励支持性的社会关系以及提供癫痫自我管理支持来帮助减少癫痫污名。了解癫痫污名及其相关因素可能有助于减轻 PLWE 承受的一些隐性负担。
