Division of Behavioral Medicine and Clinical Psychology, Center for Treatment Adherence and Self-Management, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, U.S.A.
Epilepsia. 2014 Jun;55(6):866-77. doi: 10.1111/epi.12586. Epub 2014 Mar 27.
To examine the influence of parent and family general and epilepsy-related stress on longitudinal generic and epilepsy-specific health-related quality of life (HRQOL) for children with new-onset epilepsy, while controlling for demographic characteristics, disease factors, and antiepileptic drug (AED) adherence.
This prospective, longitudinal study included 124 children with new-onset epilepsy (mean age 7.2 years, standard deviation [SD] 2.9 years). Parents completed questionnaires on parenting stress, perceived stigma, fears and concerns, and HRQOL at 1, 13, and 25 months after diagnosis. Adherence to AEDs was assessed using electronic monitors. A medical chart review was conducted at each visit to obtain seizure and side effect data.
Higher levels of general and epilepsy-specific parent and family stress, fears and concerns, and perceived stigma negatively affected child generic and epilepsy-specific HRQOL, above and beyond disease and demographic factors. General parenting and family stress affected child generic and epilepsy-specific HRQOL more in the first year of disease management than at 2 years after diagnosis. Higher fears and concerns predicted higher epilepsy-specific HRQOL at 13 months postdiagnosis, whereas 2 years postdiagnosis, higher fears and concerns predicted lower epilepsy-specific HRQOL. Several demographic (i.e., age) and disease-related variables (i.e., side effects and AED adherence) influenced child generic and epilepsy-specific HRQOL. Although some findings were consistent across generic and epilepsy-specific HRQOL measures, others were unique.
Modifiable parent factors (i.e., general and disease-specific parent and family stress, perceived stigma) impact HRQOL for children with new-onset epilepsy differently over the first 2 years postdiagnosis. Psychosocial interventions to improve HRQOL within the first year postdiagnosis should address parenting and family stress, overall coping, and anticipatory guidance on managing epilepsy. Interventions targeting adherence, perceived stigma, and fears and concerns could improve HRQOL. Promoting parent management of stress, fears/concerns, and perceived stigma may lead to improved child HRQOL outcomes. A PowerPoint slide summarizing this article is available for download in the Supporting Information section here.
研究父母和家庭的一般和癫痫相关压力对新诊断癫痫儿童纵向一般和癫痫特异性健康相关生活质量（HRQOL）的影响，同时控制人口统计学特征、疾病因素和抗癫痫药物（AED）依从性。
本前瞻性纵向研究纳入了 124 名新诊断为癫痫的儿童（平均年龄 7.2 岁，标准差[SD]2.9 岁）。父母在诊断后 1、13 和 25 个月时完成了关于育儿压力、感知耻辱感、恐惧和担忧以及 HRQOL 的问卷。使用电子监测器评估 AED 依从性。每次就诊时都会进行病历审查以获取发作和副作用数据。
较高的一般和癫痫特异性父母和家庭压力、恐惧和担忧以及感知耻辱感会降低儿童的一般和癫痫特异性 HRQOL，超出疾病和人口统计学因素的影响。在疾病管理的第一年，一般育儿和家庭压力对儿童的一般和癫痫特异性 HRQOL 的影响大于诊断后 2 年。较高的恐惧和担忧预测诊断后 13 个月时癫痫特异性 HRQOL 较高，而诊断后 2 年时，较高的恐惧和担忧预测癫痫特异性 HRQOL 较低。一些人口统计学因素（即年龄）和疾病相关变量（即副作用和 AED 依从性）影响了儿童的一般和癫痫特异性 HRQOL。尽管一些发现在一般和癫痫特异性 HRQOL 测量中是一致的，但其他发现是独特的。
可改变的父母因素（即一般和疾病特异性父母和家庭压力、感知耻辱感）在诊断后最初 2 年内对新诊断为癫痫的儿童的 HRQOL 产生不同的影响。在诊断后第一年，应针对育儿和家庭压力、整体应对以及管理癫痫的预期指导，开展改善 HRQOL 的心理社会干预。针对依从性、感知耻辱感和恐惧/担忧的干预措施可以改善 HRQOL。促进父母对压力、恐惧/担忧和感知耻辱感的管理可能会改善儿童的 HRQOL 结果。
