Oxford Epilepsy Research Group, NIHR Biomedical Research Centre, Nuffield Department of Clinical Neurosciences, John Radcliffe Hospital, Oxford, UK; Nuffield Department of Surgical Sciences, University of Oxford, UK.
Oxford Epilepsy Research Group, NIHR Biomedical Research Centre, Nuffield Department of Clinical Neurosciences, John Radcliffe Hospital, Oxford, UK; Columbia College of Physicians and Surgeons, New York, USA.
Epilepsy Behav. 2019 May;94:204-208. doi: 10.1016/j.yebeh.2019.03.012. Epub 2019 Apr 8.
The primary objective of this study was to measure the psychosocial burden for persons with epilepsy (PWEs) and for their spouses and to compare and correlate this with the clinical burden of seizures. A secondary objective was to examine the presence of gender-specific differences in the perception of psychosocial burdens by both PWE and their spouses, as well as in the factors that may influence this perception. We also sought to delineate differences in perceived stigmatization if the onset of epilepsy was within matrimony or if seizure onset was prior to marriage.
A questionnaire was constructed from previously validated instruments to measure stigma and was administered to 50 PWE-spouse pairs. A copy was applied to the PWE, and another was administered separately to the spouse. The medical notes were scrutinized by a Consultant Neurologist to enable an assessment of seizure severity for each type of seizure that the PWE experienced. Pearson correlation significance was examined at 95% level of significance.
Higher seizure severity over the month prior to data collection correlated with smaller reporting differences in psychosocial outcome between spouses and the PWE (p = 0.005), an effect that maintained significance when the period over which seizure severity was evaluated was extended to one year (p = 0.021). Regarding gender-specific differences, low mood over the month prior to administration of the questionnaire was associated with worse psychosocial scores in females only (p = 0.001). Significant impairment in driving was correlated with worse outcomes in males only (p = 0.008). Male spouses' judgment on the 'overall health' of their wife correlated to seizure severity (p = 0.003). However, the psychosocial scores reported by male spouses were inversely correlated to those of the PWE (p = 0.042). Finally, in PWE with seizure onset within marriage, a high degree of perceived stigmatization (p = 0.025) and low mood (p = 0.004) was correlated to worse psychosocial functioning. This group also tended to be more anxious when the PWE was experiencing severe seizures (p = 0.013).
Although severe seizures in this sample of couples were correlated with a smaller discrepancy in perceived seizure burden, gender-specific differences in perception of epilepsy-related psychosocial burden exist. This is true for both PWE and their spouses. Irrespective of gender, onset of epilepsy within matrimony was correlated with higher levels of anxiety and stigma. These factors need to be considered during efforts to reduce epilepsy-related stigmatization, as well as in tailoring therapies that aim to support the spouse as well as the PWE.
本研究的主要目的是衡量癫痫患者（PWE）及其配偶的心理社会负担，并将其与癫痫发作的临床负担进行比较和关联。次要目的是检查 PWE 及其配偶对心理社会负担的感知是否存在性别差异，以及可能影响这种感知的因素。我们还试图描绘如果癫痫发作始于婚姻内或发作发生在婚前，感知到的污名化是否存在差异。
从先前经过验证的工具中构建了一个衡量耻辱感的问卷，并将其分发给 50 对 PWE-配偶。一份问卷由 PWE 填写，另一份由配偶单独填写。医疗记录由顾问神经病学家仔细检查，以评估 PWE 经历的每种类型癫痫发作的严重程度。在 95%置信水平上检查 Pearson 相关显著性。
在数据收集前一个月内，癫痫发作的严重程度越高，配偶和 PWE 之间在心理社会结局方面的报告差异越小（p=0.005），当评估癫痫发作严重程度的时间延长至一年时，这种影响仍然具有统计学意义（p=0.021）。关于性别特异性差异，在填写问卷前一个月内情绪低落与女性的心理社会评分更差有关（p=0.001）。驾驶能力显著受损仅与男性的不良结局相关（p=0.008）。男性配偶对妻子“整体健康”的判断与发作严重程度相关（p=0.003）。然而，男性配偶报告的心理社会评分与 PWE 的评分呈负相关（p=0.042）。最后，在婚姻内发作的 PWE 中，感知到的高度污名化（p=0.025）和情绪低落（p=0.004）与更差的心理社会功能相关。这组患者在 PWE 经历严重癫痫发作时也更容易感到焦虑（p=0.013）。
尽管在这对夫妇的样本中，严重的癫痫发作与感知到的癫痫发作负担差异较小有关，但在感知与癫痫相关的心理社会负担方面存在性别特异性差异。这对 PWE 和他们的配偶都是如此。无论性别如何，癫痫发作发生在婚姻内与更高水平的焦虑和污名化有关。在努力减少与癫痫相关的污名化时，以及在制定旨在支持配偶和 PWE 的治疗方法时，需要考虑这些因素。
