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儿童及家长对肾移植后多维生活质量结果的看法。

Child and parental perspectives of multidimensional quality of life outcomes after kidney transplantation.

作者信息

Anthony Samantha J, Hebert Diane, Todd Laura, Korus Moira, Langlois Valerie, Pool Rita, Robinson Lisa A, Williams Angela, Pollock-BarZiv Stacey M

机构信息

SickKids Transplant Centre, Department of Pediatrics, The Hospital for Sick Children, University of Toronto, Toronto, Canada.

出版信息

Pediatr Transplant. 2010 Mar;14(2):249-56. doi: 10.1111/j.1399-3046.2009.01214.x. Epub 2009 Aug 3.

DOI:10.1111/j.1399-3046.2009.01214.x
PMID:19686446
Abstract

Kidney transplantation is an optimal therapy for pediatric patients with end-stage kidney disease. This pilot study sought to examine multidimensional QOL outcomes after kidney transplant using VAQOL and General Health, the PedsQL 4.0, PedsQL End Stage Renal Disease Module, and Impact on Family Module. Sample included 12 adolescents aged 13-18 yr and their parent; three children aged eight to 12 yr and their parent; and six parents of children aged two to seven yr. All were 73 months post transplant. The median age at transplant was 9.3 yr and median time since transplant was 3.2 yr. VAQOL mean was 7.7/10 (child report) and 7.3/10 (parent report); the mean general health was 7.4/10. High levels of fatigue (> or =5/10) were reported in 43%. PedsQL subscale mean values were lower than healthy reference scores. PedsQL Renal Module demonstrated great concern with physical appearance and physical symptoms (thirst and headaches), difficulty with peer and family interaction, and school disruption. Low scores on parental emotional function depict the negative impact of transplant on family functioning. Discordance exists between child and parental reports of QOL. Prospective studies are needed to explore multidimensional QOL to improve long-term outcomes after pediatric kidney transplant.

摘要

肾移植是终末期肾病患儿的最佳治疗方法。这项前瞻性研究旨在使用VAQOL和总体健康、儿童生活质量量表4.0、儿童生活质量量表终末期肾病模块以及对家庭的影响模块,来检验肾移植后的多维生活质量结果。样本包括12名年龄在13 - 18岁的青少年及其父母;3名年龄在8至12岁的儿童及其父母;以及6名年龄在2至7岁儿童的父母。所有患者均在移植后73个月。移植时的中位年龄为9.3岁,移植后的中位时间为3.2年。VAQOL的平均得分是7.7/10(儿童报告)和7.3/10(父母报告);总体健康平均得分为7.4/10。43%的患者报告有高水平的疲劳(≥5/10)。儿童生活质量量表子量表的平均得分低于健康参考分数。儿童生活质量量表肾脏模块显示出对身体外观和身体症状(口渴和头痛)、与同伴及家人互动困难以及学业中断的高度关注。父母情感功能得分较低表明移植对家庭功能有负面影响。儿童和父母对生活质量的报告存在不一致。需要进行前瞻性研究来探索多维生活质量,以改善小儿肾移植后的长期结果。

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