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.
| Alonso, Estella M; Neighbors, Katie; Barton, Franca B et al. (2008) Health-related quality of life and family function following pediatric liver transplantation. Liver Transpl 14:460-8 |
