Outcome of reaching end stage renal failure in children under 2 years of age

Abstract

Aims: To determine the outcome of children who reach end stage renal failure before the age of 2 years. Methods: Using a retrospective questionnaire, 10 years' data were collected from the paediatric nephrology units in Britain and Ireland (1988 to 1997, follow up 1.3-11.5 years).Results: A total of 192 children were identified; 0.31/million/year. Most had congenital or inherited conditions, and there were more boys. Latterly, half were diagnosed antenatally. Ninety per cent were dialysed initially, most using home peritoneal cyclers, some by haemodialysis through central lines. Five per cent recovered sufficient function to come off dialysis. Most required tube feeding (often gastrostomy) and erythropoietin; some needed growth hormone. A total of 56% received a transplant (2% without prior dialysis) at (medians) 2.6 years and 12.3 kg. The 2 and 10 year survival of first kidneys was 78%. Growth improved following transplantation. Fourteen per cent died because treatment was not started or was withdrawn. Most had particularly complex renal conditions, or additional major non-renal diagnoses. Typically, decisions not to treat were made mutually between clinicians and families. When treatment was continued, 71% survived, and few had serious non-renal conditions. Most attended normal schools, and by 6 years of age, less than 10% still required dialysis. Infants starting treatment under and over 1 month of age fared equally well. Conclusions: By school age, most infants treated for end stage renal failure will have a functioning transplant, reasonable growth, and will attend a normal class, regardless of the age at which they commence treatment. Treatment is seldom sustained in children who have serious additional medical conditions. It is reasonable to treat infants with uncomplicated renal failure.

Parents’ learning needs and preferences when sharing management of their child’s long-term/chronic condition: A systematic review

“…HCPs have expressed concerns that if parents are unsure about the information and skills required to share management of their child's LTC, they may not maintain treatment regimens or recognise subtle clinical changes [11], potentially resulting in poor outcomes for the child. This emphasises the importance of HCPs being able to base their information provision and teaching interventions on a robust assessment of parents' needs.…”

“…However, these aspects of clinicians' roles are rarely articulated in the literature, so little evidence exists on which to base parent-teaching interventions. If parents are unsure about the tasks needed for their child's management, they may not maintain treatment regimens or recognise subtle clinical changes [11], so negative clinical outcomes may occur with significant emotional, physical and financial implications for families [4,10] and financial implications for health services [12].…”

Renal transplantation in infants

“…The other strategy is to perform a unilateral nephrectomy and wait for the development of ESRD. In this case, RTx can be postponed to the age of 2-5 years [39]. According to a recent survey of EDTA-registry data, both approaches seem to result in equally good long-term outcome (T. Hölttä, personal communication, March 20, 2015).…”

Outcome of Patients Initiating Chronic Peritoneal Dialysis During the First Year of Life

“…[6][7][8] This is especially true for those who initiate dialysis during the neonatal period. 1,4,5,8,9 Despite advances in the medical and surgical management of all infants ,1 year with ESRD, it is unclear whether the outcome of those who receive chronic dialysis therapy has improved over time.…”

“…End-stage renal disease (ESRD) occurs rarely among children ,1 year of age, but for these children its consequences are profound. [1][2][3][4][5] Even with the early initiation of maintenance dialysis therapy, these patients are at high risk for a variety of morbidities and mortality. [6][7][8] This is especially true for those who initiate dialysis during the neonatal period.…”