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小儿腹部肿瘤患儿家长的健康相关生活质量与心理健康

Health-Related Quality of Life and Mental Health of Parents of Children with Pediatric Abdominal Tumors.

作者信息

Zierke Kira, Boettcher Michael, Behrendt Paulina, Najem Safiullah, Zapf Holger, Reinshagen Konrad, Wößmann Wilhelm, Boettcher Johannes

机构信息

Department of Pediatric Surgery, University Medical Center Hamburg-Eppendorf, Martinistrasse 52, 20246 Hamburg, Germany.

Department of Pediatric Surgery, University Medical Center Mannheim, University Heidelberg, Theodor-Kutzner-Ufer 1-3, 68167 Mannheim, Germany.

出版信息

Children (Basel). 2024 Aug 16;11(8):998. doi: 10.3390/children11080998.

DOI:10.3390/children11080998
PMID:39201933
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11352779/
Abstract

BACKGROUND

Abdominal tumors rarely occur in childhood but are associated with great psychological stress for patients and their families. Parents playing a central role in their children's treatment may experience adverse effects on their Health-Related Quality of Life (HRQoL) and mental health due to the children's illness and required treatment. Given the limited knowledge of the psychosocial burden of parents with children suffering from solid abdominal tumors, this study aims to assess their HRQoL and mental health along with the impact of various psychosocial factors.

METHODS

A cross-sectional cohort study was carried out involving 54 parents of children with solid abdominal tumors who had surgery at the University Medical Center Hamburg-Eppendorf in Germany. The results were compared with 46 parents of children undergoing routine surgeries without a prior tumor diagnosis, and with normative values. Data were obtained using standardized questionnaires.

RESULTS

Parents of the index group showed significantly worse HRQoL and limited mental health. Furthermore, they showed significantly higher parental burden in several subscales and less social support in comparison with the control group.

CONCLUSIONS

Considering the lower parental HRQoL and the central role parents play in their children's lives, it is crucial to include prevention and intervention measures for parents as part of a multimodal treatment regime for children with solid pediatric abdominal tumors.

摘要

背景

腹部肿瘤在儿童时期很少见,但会给患者及其家庭带来巨大的心理压力。在孩子治疗过程中起核心作用的父母,可能会因孩子的疾病和所需治疗而使其健康相关生活质量(HRQoL)和心理健康受到不利影响。鉴于对患有实体腹部肿瘤孩子的父母所承受的心理社会负担了解有限,本研究旨在评估他们的HRQoL和心理健康以及各种心理社会因素的影响。

方法

开展了一项横断面队列研究,纳入了54名在德国汉堡-埃彭多夫大学医学中心为患有实体腹部肿瘤的孩子进行手术的父母。将结果与46名孩子接受常规手术且术前无肿瘤诊断的父母以及标准值进行比较。使用标准化问卷获取数据。

结果

指标组的父母显示出明显更差的HRQoL和有限的心理健康状况。此外,与对照组相比,他们在几个子量表中显示出明显更高的父母负担,且社会支持更少。

结论

考虑到父母较低的HRQoL以及父母在孩子生活中所起的核心作用,将针对父母的预防和干预措施纳入小儿实体腹部肿瘤患者的多模式治疗方案中至关重要。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/43cc/11352779/aace839db3ae/children-11-00998-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/43cc/11352779/aace839db3ae/children-11-00998-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/43cc/11352779/aace839db3ae/children-11-00998-g001.jpg

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本文引用的文献

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Children (Basel). 2024 Feb 13;11(2):239. doi: 10.3390/children11020239.
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Children (Basel). 2023 Oct 23;10(10):1720. doi: 10.3390/children10101720.
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Living with a rare disease - experiences and needs in pediatric patients and their parents.
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Inj Prev. 2022 Aug;28(4):301-310. doi: 10.1136/injuryprev-2021-044309. Epub 2021 Dec 22.
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Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic.COVID-19 大流行期间患有罕见先天性外科疾病的儿童及其父母的生活质量和心理健康。
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