Department of Neurosciences and Behavioural Sciences, Ribeirão Preto Medical School, University of São Paulo, Ribeirão Preto, Brazil.
Center for Epilepsy Surgery (CIREP), Ribeirão Preto Medical School, University of São Paulo, Ribeirão Preto, Brazil; Division of Pediatric Neurosurgery, Ribeirão Preto Medical School, University of São Paulo, Ribeirão Preto, Brazil.
Epilepsy Behav. 2020 May;106:106961. doi: 10.1016/j.yebeh.2020.106961. Epub 2020 Mar 19.
The objective of this study was to analyze the impact of pediatric epilepsy surgery on the quality of life (QOL), determining whether patients improve, worsen, or maintain their preoperative patterns, as it relates to the burden of caregivers, as well as evaluating potential related factors, from both the children and caregivers perspectives.
This is a retrospective study of children and adolescents who underwent epilepsy surgery and were evaluated through clinical data, videoelectroencephalogram (V-EEG), neuroimaging findings, neuropsychological testing, and aspects of QOL. These assessments were performed prior to surgery and after six months and two years of follow-up. Quality of life was assessed with epilepsy-specialized questionnaires, namely Questionnaire health-related quality of life for children with epilepsy (QVCE-50), Autoquestionnaire Qualité de Vie Enfant Image Scale (AUQUEI), Quality of life in epilepsy inventory for adolescents (QOLEI-AD-48); and burden of caregivers with Burden Interview - ZARIT scale. Postoperative changes in QVCE-50 were quantified using measures of the analysis of variance (ANOVA MR) for comparison of the difference between the three times of the scale and domains.
Fifty patients were enrolled. Of these, 27 (54%) were male, with a mean age at surgery of 8.2 years (range: 1-18 years). Thirty-five patients (70%) were Engel I and one was Engel II (2%) at six months of follow-up, whereas 28 (56%) were Engel I and 32 (64%) were Engel I or II at two years of follow-up. Preoperatively, 21 (42%) presented with moderate or severe intellectual disability. Postoperative cognitive evaluations at the two-year follow-up showed 18 (36%) maintained similar deficits. The QVCE-50 showed postoperative improvement in the two-year follow-up period, but not at six months after surgery. Postoperative improvements were associated mainly with better seizure outcome. Autoperception evaluations were limited because of the clinical and cognitive severity of patients. The burden of caregivers was quoted as mild to moderate and remained unchanged postoperatively.
Children and adolescents with surgically treated epilepsy reach a good seizure outcome, stabilize in intellectual and adaptive functions, and have an increase in QOL, from the caregiver's perspective. Nevertheless, their burden remains unchanged. Seizure outcome is the main factor for improvement in the QOL. The upgrading of structured questionnaires and QOL instruments specific to pediatric epilepsy can be helpful to assess patient- and caregiver-reported surgical outcomes, allowing for better planning of therapeutic approaches.
本研究旨在分析儿科癫痫手术对生活质量（QOL）的影响，确定患者的 QOL 是改善、恶化还是维持术前模式，同时从患儿及其照顾者的角度评估与照顾者负担相关的潜在因素。
这是一项回顾性研究，纳入了接受癫痫手术的儿童和青少年患者，通过临床数据、视频脑电图（V-EEG）、神经影像学检查、神经心理学测试和 QOL 相关方面进行评估。这些评估在手术前以及术后 6 个月和 2 年进行。使用专门的癫痫问卷评估 QOL，即儿童癫痫健康相关生活质量问卷（QVCE-50）、自动儿童生活质量问卷（AUQUEI）、青少年癫痫生活质量量表（QOLEI-AD-48）；以及采用照顾者负担访谈量表（Zarit 量表）评估照顾者的负担。使用方差分析（ANOVA MR）比较量表和各领域的三次测量结果之间的差异，对 QVCE-50 术后的变化进行量化。
共纳入 50 例患者，其中男 27 例（54%），手术时的平均年龄为 8.2 岁（1-18 岁）。术后 6 个月时，35 例（70%）为 Engel Ⅰ级，1 例（2%）为 Engel Ⅱ级，术后 2 年时，28 例（56%）为 Engel Ⅰ级，32 例（64%）为 Engel Ⅰ或Ⅱ级。术前，21 例（42%）存在中度或重度智力障碍。术后 2 年的认知评估显示，18 例（36%）保持相似的认知缺陷。在术后 2 年的随访中，QVCE-50 显示术后有改善，但术后 6 个月时没有改善。术后改善主要与更好的癫痫发作结局相关。由于患儿的临床和认知严重程度，对其自我感知的评估受到限制。照顾者的负担被认为是轻度至中度，术后无变化。
接受手术治疗的癫痫儿童和青少年癫痫发作控制良好，智力和适应功能稳定，从照顾者的角度看生活质量提高。然而，他们的负担保持不变。癫痫发作结局是 QOL 改善的主要因素。升级针对儿科癫痫的结构化问卷和 QOL 工具可以帮助评估患者和照顾者报告的手术结果，从而更好地规划治疗方法。
