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Assessment of the Care for Children and Young Adults with End-Stage Renal Disease

Abstract : 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.
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Julien Hogan. Assessment of the Care for Children and Young Adults with End-Stage Renal Disease. Santé publique et épidémiologie. Université Paris-Saclay, 2017. English. ⟨NNT : 2017SACLS109⟩. ⟨tel-01673799⟩

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