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小儿肝移植后的健康相关生活质量:智利的单中心经验

Health-related quality of life after pediatric liver transplant: single-center experience in Chile.

作者信息

Alba A, Uribe M, Hunter B, Monzón P, Ferrada C, Heine C, Auad H

机构信息

Hospital Luis Calvo Mackenna, Santiago, Chile.

出版信息

Transplant Proc. 2013;45(10):3728-30. doi: 10.1016/j.transproceed.2013.08.091.

Abstract

INTRODUCTION

Orthotopic liver transplantation is the treatment of choice for most terminal liver diseases in children. Currently, the improved survival of these patients is well documented, but their quality of life post-transplant is not described. In Chile, Hospital Luis Calvo Mackenna (HLCM) has performed pediatric liver transplantation in children from around the country since 1994. The aim of this study is to evaluate our patients' and parents' current quality of life.

METHODS

A cross-sectional study was conducted between July 2010 and June 2011. All liver transplant patients currently in control at HLCM were invited to complete the PedsQL 4.0 report (Pediatric Quality of Life Inventory). For each group, average score was calculated and comparisons were done using Student t and χ(2) tests.

RESULTS

Forty-nine patients were enrolled. One-third of the patients were between 2 and 4 years, one-third between 5 and 12, and the rest were 13 to 18 years old. Half of the patients had their transplants for more than 3 years, 53% were female, 53% lived in cities far from the transplant center, 72.5% had chronic liver disease, 53% had received a liver from cadaveric donor, and 21% had received more than 1 liver transplant. Patients under 4 years referred good health-related quality of life (HRQOL) in all categories. All school-age patients had poor or very poor psychosocial HRQOL.

DISCUSSION

Our good results obtained in transplant patients under 4 years may be because the questionnaire was completed by caregivers. The school-age patients were affected in terms of school functioning, as they were not able to participate in all the activities. These findings need to be compared with HRQOL perception in other groups, such as children with other chronic conditions, and evaluated with other broader factors, as reported in international HRQOL publications.

摘要

引言

原位肝移植是治疗大多数儿童终末期肝病的首选方法。目前,这些患者生存率的提高已有充分记录,但移植后的生活质量尚无描述。在智利,路易斯·卡尔沃·麦肯纳医院(HLCM)自1994年以来一直在为来自全国各地的儿童进行小儿肝移植。本研究的目的是评估我们患者及其父母目前的生活质量。

方法

在2010年7月至2011年6月期间进行了一项横断面研究。邀请了所有目前在HLCM接受对照的肝移植患者填写儿童生活质量量表4.0报告(儿科生活质量量表)。对于每组,计算平均得分,并使用学生t检验和χ²检验进行比较。

结果

共纳入49例患者。三分之一的患者年龄在2至4岁之间,三分之一在5至12岁之间,其余患者年龄在13至18岁之间。一半的患者移植时间超过3年,53%为女性,53%居住在远离移植中心的城市,72.5%患有慢性肝病,53%接受了尸体供肝,21%接受了不止一次肝移植。4岁以下的患者在所有类别中均报告了良好的健康相关生活质量(HRQOL)。所有学龄患者的心理社会HRQOL均较差或非常差。

讨论

我们在4岁以下移植患者中取得的良好结果可能是因为问卷由护理人员填写。学龄患者在学校功能方面受到影响,因为他们无法参加所有活动。这些发现需要与其他群体(如患有其他慢性病的儿童)的HRQOL认知进行比较,并像国际HRQOL出版物中所报道的那样,用其他更广泛的因素进行评估。

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