This dissertation, "Translation and Validation of the Hong Kong Chinese Version of the Pediatric Quality of Life InventoryTM (PedsQLTM) End-stage Renal Disease Module" by Pak-chiu, Tong, 湯伯朝, was obtained from The University of Hong Kong (Pokfulam, Hong Kong) and is being sold pursuant to Creative Commons: Attribution 3.0 Hong Kong License. The content of this dissertation has not been altered in any way. We have altered the formatting in order to facilitate the ease of printing and reading of the dissertation. All rights not granted by the above license are retained by the author. Abstract: Objective The goal of this study is to report on the linguistic validation and reliability of the Hong Kong Chinese version of the Pediatric Quality of Life Inventory(TM) (PedsQL(TM)) End-stage Renal Disease Module for Children with end-stage renal disease (ESRD) in Hong Kong, and its use to assess health-related quality of life (HRQOL) in end-stage renal disease children receiving different treatment modalities: peritoneal dialysis, haemodialysis and renal transplantation. Methods In part 1, forward and backward translations following a stringent validation protocol produced the Chinese translation version. Content validity of the translated instrument was assessed. In part 2, internal consistency and reliability of the questionnaire was evaluated by 38 pairs of parents and children with end-stage renal disease aged 5 to 18. The data was further analysed according to different treatment modalities. Results The translated Hong Kong Chinese version of the Pediatric Quality of Life Inventory (TM) (PedsQL(TM)) End-stage Renal Disease Module (PedsQL(TM) 3.0 ESRD Module-HKC) was found to have good content validity and was acceptable to most patients and parents. Internal consistency was excellent (Cronbach's α = 0.91 in Patient version and = 0.94 in Parent version). Test-retest reliability, determined with the intraclass correlation coefficients, was excellent (0.89 in Patient version and 0.93 in Parent version). It was found that there was significant better HRQOL in patient received renal transplantation compared with Dialysis (peritoneal dialysis or haemodialysis, p=0.006.) Conclusions This study suggested good content validity, internal consistency, and reliability of the Chinese version of the Pediatric Quality of Life Inventory (TM) (PedsQL(TM)) End-stage Renal Disease Module (PedsQL(TM) 3.0 ESRD Module-HKC). It opened a new dimension of health care assessment for end-stage renal disease children in Hong Kong. Transplantation was reported to have a significant better quality of life score. Further studies with larger samples should be performed to confirm the psychometric properties of this translated instrument. DOI: 10.5353/th_b4842574 Subjects: Quality of life Kidneys - Diseases - Patients Children - Diseases

Renal transplantation is nowadays recognized as the treatment of choice for end-stage renal disease in children and young adults. It is associated with improved survival, better quality of life and better long-term cost-effectiveness. However, many questions remain considering the optimal management of the patients before transplantation, during the transplantation process and after transplantation. We aim to analyze the care and treatment received by children with chronic kidney diseases, to detect potential disparities in patients' management and to provide useful tools to help decision-making and treatment planning.We used several data sources including the French renal replacement therapy (RRT) registry (REIN), the European RRT registry (ESPN/ERA-EDTA) and the French National medico-administrative Hospital Discharge database (PMSI).First, we focused on medical and non-medical factors that may induce disparity and found that besides medical factors, female gender was associated with a delayed access to renal transplantation and especially to preemptive transplantation. This might be partially explained by a faster decline of renal function in girls that remains to be explored. Aside for patients' characteristics, we found that centers' practices strongly impact patients' trajectories. It is a main factor both in the choice of the first modality of RRT (hemodialysis or peritoneal dialysis) and in the access to renal transplantation especially through a faster access to the renal transplant waiting list.Then, we focused on the subgroup of the younger patients starting RRT before 2 years old, whose management is particularly challenging. We confirmed the great improvement in the care of those patients with only extrarenal comorbidities being still associated with a poorer survival. Considering renal transplant survival, we assess the importance of a matching in height between the donor and the recipient with an optimal donor/recipient height ratio between 1.4 and 1.8 and the importance of HLA matching especially in class 2. We aim to combine those risk factors in a prediction tool to help clinicians in their choices and will perform an external validation of this tool on another cohort.Based on the hospital discharge data, we studied post-transplant complications requiring a hospitalization and found that infections are the main cause of hospitalization post-transplant, far more frequent than graft rejection or cancer.Finally, given the longevity of children undergoing kidney transplantation, most pediatric recipients will inevitably develop graft failure, requiring a return to dialysis or a second transplant so that one should consider the complete trajectory of the patients and try to maximize the time spent with a functioning transplant and minimize the time spent on dialysis. We developed a simulation tool allowing us to test modifications of treatment strategies (e.i: increase in transplantation from living-donor kidney or in preemptive transplantation, better HLA-matching at first transplantation) and their effect on patients' trajectories. This tool will be further implemented to answer more complex questions on specific subgroups of patients.

End-stage renal disease is a devastating diagnosis to the patient, family and their care provider. This book covers all aspects of chronic kidney disease from a general description to its psychological impact on the adolescent and lastly its progression to end-stage and dialysis. It details the important aspects of the patient’s journey from diagnosis to their final destination including transplant and discussion of the medications used. It includes chapters on important etiologies of chronic kidney disease in adolescence, addressing the particular challenges a provider may be faced with in caring for this age group, and finally transition of their care to adult care providers. Written by experts in the field of pediatrics and nephrology Adolescents with Chronic Kidney Disease is the definitive resource in diagnosing and transitioning patients with chronic kidney disease.

First edition edited by Janel Parker in 1998

More children born today will survive to adulthood than at any time in history. It is now time to emphasize health and development in middle childhood and adolescence--developmental phases that are critical to health in adulthood and the next generation. Child and Adolescent Health and Development explores the benefits that accrue from sustained and targeted interventions across the first two decades of life. The volume outlines the investment case for effective, costed, and scalable interventions for low-resource settings, emphasizing the cross-sectoral role of education. This evidence base can guide policy makers in prioritizing actions to promote survival, health, cognition, and physical growth throughout childhood and adolescence.