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特发性肾病综合征稳定缓解期患儿的生活质量:一项横断面研究。

Quality of life in children with severe forms of idiopathic nephrotic syndrome in stable remission-A cross-sectional study.

机构信息

Service de Néphrologie et Dialyse Pédiatrique, Hôpital Trousseau, APHP.6, and DHU i2b, Paris, France.

INSERM, UMR 1153, ECSTRA, Hôpital Saint-Louis, AP-HP, Paris, France.

出版信息

Acta Paediatr. 2019 Dec;108(12):2267-2273. doi: 10.1111/apa.14912. Epub 2019 Jul 15.

Abstract

AIM

Severe forms of idiopathic nephrotic syndrome (INS) require immunosuppressive therapy: oral treatment or intravenous therapy (rituximab, RTX). The main objective was to describe quality of life (QOL) in these specific patients.

METHODS

Cross-sectional, multicentre, observational study analysed QOL using a standardised questionnaire in children from 7 to 17 years, with a steroid-dependent or steroid-resistant INS in stable remission. The questionnaire consisted of 30 questions concerning physical and emotional well-being, self-esteem, family, friends, school and disease resulting in a global score of 0-100.

RESULTS

A total of 110 patients with a mean age of 11.6 years from three French paediatric nephrology centres were included. A total of 71 patients had oral immunosuppressive treatment, 27 had RTX, and 12 had both. 13.6% of patients had a steroid-resistant INS. The mean number of relapses was 5.8. Seventy-eight patients answered the questionnaire. The global score in the whole study population was 74.7; 72.6 in the RTX group, 76.2 in the oral drugs group, (P = 0.49). The results of sub-dimension 'school' were statistically lower in RTX group (61.6 ± 19.5) compared with oral drugs group (71.4 ± 16; P = 0.02).

CONCLUSION

Global QOL score was high in 'difficult-to-treat' patients with INS in stable remission on oral immunosuppressive or RTX treatment.

摘要

目的

特发性肾病综合征(INS)的严重形式需要免疫抑制治疗:口服治疗或静脉治疗(利妥昔单抗,RTX)。主要目的是描述这些特定患者的生活质量(QOL)。

方法

横断面、多中心、观察性研究通过标准化问卷分析了 7 至 17 岁儿童的生活质量,这些儿童患有依赖激素或抵抗激素的 INS,且处于稳定缓解期。问卷由 30 个关于身体和情绪健康、自尊、家庭、朋友、学校和疾病的问题组成,总分为 0-100。

结果

共纳入来自法国三个儿科肾病中心的 110 名平均年龄为 11.6 岁的患者。71 名患者接受口服免疫抑制治疗,27 名患者接受 RTX 治疗,12 名患者同时接受两种治疗。13.6%的患者为激素抵抗性 INS。平均复发次数为 5.8 次。78 名患者回答了问卷。整个研究人群的总体评分是 74.7;RTX 组为 72.6,口服药物组为 76.2(P=0.49)。RTX 组的“学校”子维度的结果明显低于口服药物组(61.6±19.5)(P=0.02)。

结论

在接受口服免疫抑制剂或 RTX 治疗、处于稳定缓解期的“难治性”INS 患者中,整体 QOL 评分较高。

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