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慢性肾病患儿的生活质量。

Quality of life in children with chronic kidney disease.

作者信息

Dotis John, Pavlaki Antigoni, Printza Nikoleta, Stabouli Stella, Antoniou Stamatia, Gkogka Chrysa, Kontodimopoulos Nikolaos, Papachristou Fotios

机构信息

First Department of Pediatrics, Hippokration Hospital, Aristotle University of Thessaloniki, Thessaloniki, Greece.

Open University of Cyprus, Latsia, Nicosia, Cyprus.

出版信息

Pediatr Nephrol. 2016 Dec;31(12):2309-2316. doi: 10.1007/s00467-016-3457-7. Epub 2016 Sep 27.

DOI:10.1007/s00467-016-3457-7
PMID:27677977
Abstract

BACKGROUND

Progressive chronic kidney disease (CKD), irrespective of the underlying etiology, affects the quality of life (QoL) of children due to the need for regular follow-up visits, a strict medication program and diet intake.

METHODS

The Greek version of the KIDSCREEN-52 multidimensional questionnaire was used in children with CKD, renal transplantation (RT) and in a control group (CG) of healthy children.

RESULTS

Fifty-five patients between 8 and 18 years, with CKD (n = 25), RT (n = 16) and with end-stage renal disease (ESRD) on peritoneal dialysis (PD) (n = 14) were included. Each group of studied children was compared with the CG (n = 55), the validation sample (VS) (n = 1200) and the parent proxy scores. Physical well-being of all studied children was significantly lower compared to CG (p = 0.004). In contrast, all studied children between 8 and 11 years showed better social acceptance compared to VS (p = 0.0001). When QoL of children with CKD was compared with parent proxy QoL, conflicting opinions were observed in several dimensions, such as self-perception (p = 0.023), autonomy (p = 0.012), school environment (p = 0.012) and financial resources (p = 0.03).

CONCLUSIONS

QoL and mainly the dimension of physical well-being, may be affected dramatically in children with CKD unrelated to disease stage. In early school years children with CKD seem to feel higher social acceptance than the healthy controls, exhibiting better score in this dimension. Optimal care requires attention not only to medical management, but also to an assessment of QoL factors, that may help promote pediatric patient's health.

摘要

背景

进展性慢性肾脏病(CKD),无论其潜在病因如何,由于需要定期随访、严格的药物治疗方案和饮食摄入,都会影响儿童的生活质量(QoL)。

方法

将KIDSCREEN - 52多维问卷的希腊语版本用于CKD患儿、肾移植(RT)患儿以及健康儿童对照组(CG)。

结果

纳入了55例8至18岁的患者,其中CKD患者25例,RT患者16例,接受腹膜透析(PD)的终末期肾病(ESRD)患者14例。将每组研究儿童与CG(n = 55)、验证样本(VS)(n = 1200)以及家长代理评分进行比较。与CG相比,所有研究儿童的身体健康状况显著更低(p = 0.004)。相比之下,所有8至11岁的研究儿童在社会接纳方面表现优于VS(p = 0.0001)。当比较CKD患儿的QoL与家长代理QoL时,在几个维度上观察到了相互矛盾的观点,如自我认知(p = 0.023)、自主性(p = 0.012)、学校环境(p = 0.012)和财务资源(p = 0.03)。

结论

CKD患儿的QoL,尤其是身体健康维度,可能会受到与疾病阶段无关的显著影响。在学龄早期,CKD患儿似乎比健康对照者感受到更高的社会接纳度,在这一维度上得分更高。最佳护理不仅需要关注医疗管理,还需要评估可能有助于促进儿科患者健康的QoL因素。

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Pediatr Nephrol. 2016 Oct;31(10):1579-91. doi: 10.1007/s00467-015-3186-3. Epub 2015 Aug 27.
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Evaluation of quality of life by young adult survivors of severe chronic kidney disease in infancy.婴儿期严重慢性肾病青年幸存者的生活质量评估。
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Health-related quality of life of children and adolescents with CKD stages 4-5 and their caregivers.
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Int J Nephrol Renovasc Dis. 2024 Jan 8;17:17-28. doi: 10.2147/IJNRD.S428657. eCollection 2024.
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