Quality of Life in Children After Liver Transplantation

描述：本研究组的长期目标是改善结局， 护理质量，并促进儿科肝移植（LT）的成本节约 受惠人士这项研究的主要目的是描述肝脏移植后存活的儿童的健康相关生活质量（HRQOL）。 移植（LT），并检查疾病严重程度的影响， 移植物和接受的移植物类型（活体供体（LD）或尸体） 长期HRQOL。该研究将在选定的五个医疗中心进行 儿科肝病研究（SPLIT）研究网络。分裂是 一个由北美38个中心组成的联盟，成立于1995年， 前瞻性地收集人口统计学和临床结果数据， 接受LT的儿童队列。需要多中心合作， 招募足够的样本量以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， 移植手术两周年纪念日这些孩子的父母将 填写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， 测试规范和临床样本。这些调查的数据将包括 身体和心理健康的措施，角色功能，社会限制， 家庭功能。患者人口统计学信息和临床数据，包括过去 目前，将从SPLIT数据库中获得，并作为预测因子进行测试 HRQOL的这些领域。具体来说，这个项目将测试假设 在LT时患有晚期肝病的儿童 长期随访HRQOL较低。它还将评估LD LT是否 与尸体相比，该过程改善了长期HRQOL和家庭功能 移植评估移植后儿童的HRQOL是一个 预测其持续需求的重要方面。HRQOL指标可能是 用于向支付者和政策制定者展示 可能不影响传统临床结果但可能 对病人有很大的影响吗？整体健康状况和功能， 社会选择临床选择和干预措施， HRQOL将有助于减轻长期护理负担。

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.