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大脑半球切除术对儿童和青少年生活质量和照顾者负担的影响:一项回顾性观察研究。

Impact of hemispherotomy on quality of life and burden of caregivers in children and adolescents: a retrospective observational study.

机构信息

Ribeirão Preto Medical School, University of São Paulo, Ribeirão Preto, Brazil.

出版信息

Childs Nerv Syst. 2024 Dec;40(12):4161-4168. doi: 10.1007/s00381-024-06593-4. Epub 2024 Sep 8.

Abstract

PURPOSE

To evaluate QOL and caregiver burden of children and teenagers submitted to hemispherotomy for pharmacoresistant epilepsy, by comparing pre and post-surgical intervention data.

MATERIALS AND METHODS

Retrospective analysis of pediatric patients submitted to surgical hemispherotomy before intervention (preOP) and their follow-up at 6 months (6 M PO) and 2 years (2Y PO) after surgery. QOL was evaluated through the Quality of Life in Childhood Epilepsy (QVCE-50) questionnaire and caregiver burden, through the Zarit Burden Interview (ZBI) tool.

RESULTS

Twenty-two patients were included in the study. Sixteen patients (72%) were classified as Engel I at 2Y PO follow-up. QVCE-50 scale showed improvement of total QOL at 2Y PO. In relation to QVCE-50-specific domains, there was an improvement in the physical domain and in the cognitive-education a decrease in psychological and a stabilization in social/familiar domain scores. The majority of caregivers classified their burden as mild to moderate, with no PO improvement.

CONCLUSIONS

Hemispherotomy represents an effective seizure control treatment, as well as it contributes to improvement of QOL, particularly in the physical domain and in spite of children's physical and cognitive limitations. However, no improvement in caregiver burden was observed, probably due to the chronic condition of these patients, which might be worsened by social issues.

摘要

目的

通过比较术前和术后干预的数据,评估接受半脑切除术治疗药物难治性癫痫的儿童和青少年的生活质量和照顾者负担。

材料和方法

对接受手术性半脑切除术的儿科患者进行回顾性分析,这些患者在术前(术前)和术后 6 个月(术后 6 个月)和 2 年(术后 2 年)进行了随访。生活质量通过儿童癫痫生活质量问卷(QVCE-50)进行评估,照顾者负担通过 Zarit 负担量表(ZBI)进行评估。

结果

共有 22 名患者纳入本研究。16 名患者(72%)在术后 2 年随访时被归类为 Engel I 级。QVCE-50 量表显示总生活质量在术后 2 年得到改善。在 QVCE-50 特定领域方面,身体领域得到改善,而认知-教育领域的心理领域得分下降,社会/熟悉领域得分稳定。大多数照顾者将其负担归类为轻度至中度,随访期间没有改善。

结论

半脑切除术是一种有效的控制癫痫发作的治疗方法,同时有助于提高生活质量,特别是在身体领域,尽管儿童存在身体和认知方面的限制。然而,并未观察到照顾者负担的改善,这可能是由于这些患者的慢性状况,以及社会问题可能使情况恶化。

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