Attitudes of Caregivers to Management of End-Stage Renal Disease in Infants

Abstract

Attitudes of pediatric nephrologists have changed since 1998. Also, nurses have opinions that are different from those of the nephrologists on some issues, and a consensus should be reached before speaking to families.

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

“…15,16 Mortality rates as high as 48% have been recorded in neonates initiating chronic dialysis and ,50% of pediatric dialysis health care providers would choose to provide dialysis to all children ,1 year, as reported in an international survey. 9,11 This decision-making process is made all the more challenging by the absence of clear, consistent evidence on the Older infants in the more recent cohort weighed more than those in the past cohort (P = .038 for mean weight, P = .0004 for mean z score).…”

“…[6][7][8] Given the discrepancies between registry and single-center outcomes and the limitations of each type of study, there is good reason that many physicians find it difficult to counsel families with confidence about the long-term prognosis of these patients, and in turn, some physicians who care for infants with ESRD (eg, neonatologists and nephrologists) remain hesitant to offer maintenance dialysis or initiate the transplant process. [10][11][12] We therefore conducted the following study to provide some additional data on the issue of the outcome of infants who initiate chronic dialysis during the first year of life, hypothesizing that patient survival and transplantation outcomes have improved in recent years among patients registered in the NAPRTCS database.…”

Chronic peritoneal dialysis in Chinese infants and children younger than two years

“…13 In Abbreviation: SDS = standard deviation score two surveys, serious co-existing co-morbidities and predicted morbidity were the most important factors when a physician considered withholding dialysis. 1,19 While serious non-renal co-morbidities such as pulmonary hypoplasia are strongly associated with a poor prognosis, 20 patients with isolated renal disease should be considered separately as their prognosis is generally better. 18 It should be a shared decision-making process between parents and paediatric nephrologists, after detailed counselling on potential burdens and after considering comorbidities, expected quality of life, and available resources and expertise.…”

Update on Ethical Issues in Pediatric Dialysis: Has Pediatric Dialysis Become Morally Obligatory?

“…This means that depending on the family, it may be appropriate to initiate or discontinue life-sustaining dialysis for a child with a severe neurodevelopmental disability. This framework can be broadly applied to each of the special populations we discuss in this article, and may account for the numerous studies that suggest nephrologists do consider impact on families when making treatment recommendations and why the European Pediatric Dialysis Working Group Guideline (EPDWG) for the care of infants with stage 5 CKD recommends consideration of quality of life for both the child and the family (13)(14)(15)(16).…”

“…Two international surveys performed in 1998 and 2008 show an overwhelming majority of nephrologists (93% and 98%, respectively) will offer dialysis to some infants with ESRD, but not to all (41% and 30%, respectively) and the majority feel that it is acceptable for parents to refuse RRT in children ,1 month (81% and 73%, respectively) ( Table 2) (15,16). In 1996, Bunchman advocated for an approach of shared decision making to choose between courses of aggressive dialysis therapy, "wait and see," and comfort care only (20).…”