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

IF 1.3 4区医学 Q4 CLINICAL NEUROLOGY

Child's Nervous System Pub Date : 2024-12-01 Epub Date: 2024-09-08 DOI:10.1007/s00381-024-06593-4

Bruna Frizzera Daniel, Suenia Timotheo Figueiredo Leal, Américo Ceiki Sakamoto, Ursula Thomé, Hélio Rubens Machado, Marcelo Volpon Santos, Antônio Carlos Dos Santos, Ana Paula Andrade Hamad

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引用次数: 0

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.

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半球切除术对儿童和青少年生活质量和护理负担的影响：一项回顾性观察研究。

目的：通过比较手术前后的干预数据，评估因药物耐药性癫痫而接受半球切除术的儿童和青少年的生活质量和护理负担：对接受手术半球切除术的儿科患者进行干预前（手术前）和术后6个月（术后6个月）及2年（术后2年）随访的回顾性分析。通过儿童癫痫生活质量（QVCE-50）问卷对患者的生活质量进行评估，并通过Zarit负担访谈（ZBI）工具对照顾者的负担进行评估：研究共纳入 22 名患者。在 PO 随访 2 年时，16 名患者（72%）被归类为恩格尔 I 型。QVCE-50量表显示，患者在治疗前2年的总QOL有所改善。就 QVCE-50 的特定领域而言，身体领域有所改善，认知-教育领域有所改善，心理领域得分有所下降，社交/熟悉领域得分趋于稳定。大多数护理人员将自己的负担归为轻度至中度，PO没有改善：半球切除术是一种有效的癫痫控制治疗方法，它有助于改善患者的 QOL，尤其是在身体领域，尽管儿童的身体和认知能力受到限制。然而，护理人员的负担并没有得到改善，这可能是由于这些患者的慢性病，而社会问题可能会加重他们的负担。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Child's Nervous System 医学-临床神经学

CiteScore

3.00

自引率

7.10%

发文量

322

审稿时长

3 months

期刊介绍： The journal has been expanded to encompass all aspects of pediatric neurosciences concerning the developmental and acquired abnormalities of the nervous system and its coverings, functional disorders, epilepsy, spasticity, basic and clinical neuro-oncology, rehabilitation and trauma. Global pediatric neurosurgery is an additional field of interest that will be considered for publication in the journal.