Luyckx Koen, Oris Leen, Raymaekers Koen, Rassart Jessica, Moons Philip, Verdyck Ludo, Mijnster Teus, Mark Ruth E
University of Leuven, Leuven, Belgium.
University of Leuven, Leuven, Belgium; Research Foundation Flanders (FWO), Belgium.
Epilepsy Behav. 2018 Mar;80:48-55. doi: 10.1016/j.yebeh.2017.12.036. Epub 2018 Feb 2.
Refractory epilepsy is an intrusive condition with important implications for daily functioning in emerging and young adulthood. The present study examined the degree to which refractory epilepsy is integrated in one's identity, and examined how such a sense of illness identity was related to health-related quality of life (HRQOL).
A total of 121 18- to 40-year-old patients with refractory epilepsy (56.2% women) completed self-report questionnaires assessing the four illness identity states of acceptance, enrichment, engulfment, and rejection (Illness Identity Questionnaire (IIQ)); HRQOL (Quality of Life in Epilepsy Inventory - 31); and seizure frequency and severity (Liverpool Seizure Severity Scale (LSSS)). Illness identity scores were compared with a sample of 191 patients with a nonneurological chronic disease (congenital heart disease). Hierarchical regression analyses were conducted to assess the predictive value of illness identity for HRQOL when simultaneously controlling for demographic and clinical features.
Patients with refractory epilepsy scored higher on rejection and engulfment and lower on acceptance when compared with patients with congenital heart disease. Further, seizure severity and number of medication side-effects were positively related to engulfment and negatively to acceptance. Finally, when simultaneously controlling for various demographic and clinical variables, illness identity significantly predicted HRQOL (with engulfment being the strongest and most consistent predictor).
The extent to which patients with refractory epilepsy succeed in integrating their illness into their identity may have important implications for HRQOL. Clinicians should be especially attentive for signs that patients feel engulfed by their epilepsy.
难治性癫痫是一种侵扰性疾病，对青少年及青年的日常功能有着重要影响。本研究探讨了难治性癫痫在个体身份认同中所占的程度，并研究了这种疾病身份感与健康相关生活质量（HRQOL）之间的关系。
共有121名年龄在18至40岁之间的难治性癫痫患者（56.2%为女性）完成了自我报告问卷，这些问卷评估了接受、充实、吞噬和排斥这四种疾病身份状态（疾病身份问卷（IIQ））；HRQOL（癫痫生活质量量表-31）；以及癫痫发作频率和严重程度（利物浦癫痫严重程度量表（LSSS））。将疾病身份得分与191名非神经科慢性疾病（先天性心脏病）患者的样本进行比较。进行分层回归分析，以评估在同时控制人口统计学和临床特征时，疾病身份对HRQOL的预测价值。
与先天性心脏病患者相比，难治性癫痫患者在排斥和吞噬方面得分较高，在接受方面得分较低。此外，癫痫发作严重程度和药物副作用数量与吞噬呈正相关，与接受呈负相关。最后，在同时控制各种人口统计学和临床变量时，疾病身份显著预测了HRQOL（吞噬是最强且最一致的预测因素）。
难治性癫痫患者将疾病融入其身份认同的程度可能对HRQOL有重要影响。临床医生应特别留意患者感到被癫痫吞噬的迹象。
