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儿童终末期肾病对其父母的影响。

Impact of end-stage renal disease in children on their parents.

作者信息

Baek Hee Sun, Park Ki-Soo, Ha Il Soo, Kang Hee Gyung, Cheong Hae Il, Park Young Seo, Lee Joo Hoon, Cho Hee Yeon, Cho Min Hyun

机构信息

Department of Pediatrics, Kyungpook National University Hospital, Daegu, Korea.

Department of Preventive Medicine and Institute of Health Sciences, Gyeongsang National University Hospital, Jinju, Korea.

出版信息

Nephrology (Carlton). 2018 Aug;23(8):764-770. doi: 10.1111/nep.13083.

Abstract

AIM

This study was designed to investigate the impact of paediatric end-stage renal disease (ESRD) on parents, based on the PedsQL Family Impact Module (FIM), and the relationship to the quality of life (QOL) of paediatric ESRD patients measured by PedsQL 3.0 ESRD module.

METHODS

We performed a cross-sectional study using Korean translations of the PedsQL FIM and the PedsQL 3.0 ESRD module. In all, 79 patients were enrolled, including 47 children receiving dialysis and 32 children who underwent renal transplant.

RESULTS

FIM scores, analyzed for every category according to treatment modality, were significantly lower in haemodialysis (HD) than in peritoneal dialysis (PD) or renal transplant patients. Mother's age, duration since diagnosis of ESRD and the existence of comorbidity were variables to have significant effects on FIM scores. The correlation between total FIM and QOL scores of paediatric patients were significant, in both parent-proxy and child-self report.

CONCLUSIONS

The PedsQL FIM appears to be a useful tool for the assessment of family impact on children with ESRD. Further prospective studies focused on the QOL of parents and caregivers should be performed with the goal of improving clinical outcomes for paediatric ESRD patients.

摘要

目的

本研究旨在基于儿童生活质量量表家庭影响模块(FIM),探讨儿童终末期肾病(ESRD)对父母的影响,以及与通过儿童生活质量量表3.0版ESRD模块测量的儿童ESRD患者生活质量(QOL)的关系。

方法

我们使用儿童生活质量量表FIM和儿童生活质量量表3.0版ESRD模块的韩语翻译进行了一项横断面研究。总共纳入了79名患者,其中包括47名接受透析的儿童和32名接受肾移植的儿童。

结果

根据治疗方式对每个类别进行分析的FIM评分,血液透析(HD)患者显著低于腹膜透析(PD)或肾移植患者。母亲年龄、ESRD诊断后的病程以及合并症的存在是对FIM评分有显著影响的变量。在家长代理报告和儿童自我报告中,儿童患者的FIM总分与QOL评分之间的相关性均显著。

结论

儿童生活质量量表FIM似乎是评估家庭对ESRD儿童影响的有用工具。应以改善儿童ESRD患者的临床结局为目标,进一步开展针对父母和照顾者生活质量的前瞻性研究。

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