Cianchetti Carlo, Messina Paolo, Pupillo Elisabetta, Crichiutti Giovanni, Baglietto Maria Giuseppina, Veggiotti Pierangelo, Zamponi Nelia, Casellato Susanna, Margari Lucia, Erba Giuseppe, Beghi Ettore
Clinic of Child and Adolescent Neuropsychiatry, University, Azienda Ospedaliero-Universitaria, Cagliari, Italy.
Department of Neurosciences, IRCSS - Istituto for Pharmacological Research "Mario Negri", Milano, Italy.
Seizure. 2015 Jan;24:93-101. doi: 10.1016/j.seizure.2014.09.003. Epub 2014 Sep 16.
The assessment of the quality of life (QoL) is relevant for a comprehensive treatment of patients with epilepsy. In children and adolescents, an impact of epilepsy on the QoL of the entire family is expected.
We asked 293 parents of children and adolescents with epilepsy, included in an observational study on treatment satisfaction, to evaluate the impact of the disease on several aspects of the QoL of the whole family using a specifically organized questionnaire (IEQoL).
The degree of parents' concerns about epilepsy and the severity of the disease correlated with a deterioration of QoL in both the children and the family. This involved all aspects of QoL (conflicts within the family, job, leisure activities, peer relationship, economy) although to a different degree. Parents frequently admitted increased apprehensiveness, even when not justified by the low severity of the disease. There was general agreement between parents and their adolescent children, although in a few cases adolescents overrated their school and daily performance in respect to the parents, suggesting a tendency to overlook their problems.
Epilepsy impairs all aspects of QoL, although at different degree, both in children/adolescents and in their families. Parental apprehensiveness appears to have a role on this, and it may not reflect the severity of the disease.
生活质量（QoL）评估对于癫痫患者的综合治疗具有重要意义。对于儿童和青少年患者，预计癫痫会对整个家庭的生活质量产生影响。
我们邀请了参与治疗满意度观察性研究的293名癫痫患儿及青少年的家长，使用一份专门设计的问卷（IEQoL）来评估该疾病对整个家庭生活质量多个方面的影响。
家长对癫痫的担忧程度和疾病的严重程度与患儿及其家庭生活质量的恶化相关。这涉及生活质量的各个方面（家庭内部冲突、工作、休闲活动、同伴关系、经济状况），尽管程度有所不同。家长经常承认担忧增加，即使疾病严重程度较低也无正当理由。家长与其青少年子女之间总体意见一致，不过在少数情况下，青少年在学业和日常表现方面对自己的评价高于家长，这表明他们有忽视自身问题的倾向。
癫痫会损害儿童/青少年及其家庭生活质量的各个方面，尽管程度不同。家长的担忧似乎对此有影响，且可能并不反映疾病的严重程度。
