Quality of Life in Children After Liver Transplantation

描述：这个研究小组的长期目标是改善结果， 提高护理质量，促进儿科肝移植(LT)成本节约 收件人。这项拟议研究的主要目标是描述存活在肝脏的儿童的健康相关生活质量(HRQOL) 移植(LT)和检查疾病严重程度的影响 移植和移植的类型(活体供体(LD)或身体) 长期的HRQOL。这项研究将在选定的五个医疗中心进行 来自儿科肝病研究(SPLIT)研究网络。拆分是 由北美38个中心组成的财团，成立于1995年，旨在 前瞻性地从一家大型企业收集人口统计学和临床结果数据 接受LT的儿童队列。需要多中心协作来实现 招募足够的样本量来实现当前的研究目标。这 是一项横断面研究，将评估150名2-18岁的儿童 他们的移植两周年纪念日。这些孩子的父母会 完成儿童健康问卷和家庭评估工具。这些 调查是经过仔细验证的多维工具，已用于 对标准样本和临床样本进行检测。这些调查的数据将包括 身心健康、角色功能、社会局限性和 家庭功能。患者人口统计信息和临床数据，均为过去 将从拆分的数据库中获得并作为预测指标进行测试 在这些领域的HRQOL。具体地说，这个项目将检验这一假设 在肝移植时有更多晚期肝病的儿童 在长期随访中降低HRQOL。它还将评估LD LT是否 与身体相比，过程改善了长期的HRQOL和家庭功能 移植。评估移植后儿童的HRQOL是一种 这是预测其持续需求的重要方面。HRQOL测量可以是 用来向付款人和政策制定者展示这些 可能不会影响传统临床结果但可能 对患者有很大影响吗？总体幸福感和发挥作用的能力 社会。选择临床选择和干预措施，最大限度地实现长期 随着时间的推移，HRQOL将有助于减轻护理负担。

DESCRIPTION: The long-term goal of this study group is to improve outcome, quality of care, and promote cost-savings for pediatric liver transplant (LT) recipients. The primary objectives of the proposed study are to describe the health-related quality of life (HRQOL) of children who survive liver transplantation (LT) and to examine the impact of disease severity at transplant and the type of graft received (living-donor (LD) or cadaveric) on long-term HRQOL. The study will be conducted at five medical centers selected from the Studies of Pediatric Liver Disease (SPLIT) research network. SPLIT is a consortium of 38 centers in North America, established in 1995 to prospectively collect demographic and clinical outcome data from a large cohort of children receiving LT. Multi-center collaboration is needed to enroll a sufficient sample size to achieve the current study objectives. This is a cross-sectional study that will evaluate 150 children aged 2-18 years at the two-year anniversary of their transplant. Parents of these children will complete Child Health Questionnaire and the Family Assessment Device. These surveys are carefully validated multi-dimensional tools that have been used to test both normative and clinical samples. Data from these surveys will include measures of physical and mental health, role function, social limitations and family function. Patient demographic information and clinical data, both past and present, will be obtained from the SPLIT database and tested as predictors of these domains of HRQOL. Specifically, this project will test the hypothesis that children who have more advanced liver disease at the time of LT have lower HRQOL in long-term follow-up. It will also evaluate whether the LD LT process improves long-term HRQOL and family function as compared to cadaveric transplantation. Assessing the HRQOL of children following transplant is an important aspect of predicting their ongoing needs. HRQOL measures could be used to demonstrate to payers and policy makers the value of those interventions which may not affect traditional clinical outcomes but which may have great impact on patients? overall well being and ability to function in society. Selecting clinical options and interventions that maximize long-term HRQOL would help reduce the burden of care over time.