Although the number of children with end-stage kidney disease (ESKD) is small compared to adults, their management can pose a unique challenge due to variability in size and their complex medical, growth, and maturational needs, as well as caregiver involvement. The adjusted incidence of ESKD in children has remained relatively unchanged from 2014 to 2018, ~11.5 per million population, whereas prevalence has increased, with close to 71% of the pediatric ESKD population receiving kidney transplant (1). Racial disparities are noted in modality of treatment, with White children twice as likely to receive a kidney transplant as Black children, and the latter more likely to receive hemodialysis (HD) over peritoneal dialysis (PD). Hispanic-Latino children are also less likely to receive kidney transplant and initiate HD more often than PD compared to non-Hispanic children.
Congenital abnormalities of the kidney and urinary tract (CAKUT) remain the primary etiology for kidney failure in infants and young children, whereas etiology is more varied in the adolescent age group, with a higher prevalence of glomerulonephritis and tubulointerstitial diseases. In comparison, diabetes, neoplasms and tumors, and hyper-tensive/large vessel disease are relatively uncommon causes of incident ESKD in children (1). Adjusted mortality has declined in recent years, with the primary cause of death being cardiovascular disease (25%) followed by infection (13.3%). Hard cardiovascular endpoints (such as stroke, myocardial infarction, and death) have low incidence in the pediatric ESKD population; therefore, surrogate markers like left-ventricular hypertrophy, pulse-wave velocity, and carotid-intimal thickness are often used in outcome-based research studies (2).
The prevention of infection is imperative for children on dialysis. Infections are not only a leading cause of mortality for children with ESKD but also lead to increased morbidity, posing an important risk factor for PD failure or the need for HD access replacement with potential loss of a vascular access site.
Focused on increasing implementation of standardized best care practices initially for pediatric PD patients and later pediatric HD patients, the Standardizing Care to Improve Outcomes in Pediatric End Stage Renal Disease (SCOPE) Collaborative was developed. Together, the pediatric dialysis community in collaboration with North American Pediatric Renal Trials and Collaborative Studies (NAPRTCS), Children's Hospital Association (CHA), and Making Dialysis Safer for Patient Coalition launched a national multicenter North American quality improvement effort. Currently, there are 53 pediatric dialysis centers participating in the initiative implementing best practice bundles focused on PD catheter insertion, PD catheter care and follow-up, PD training, and HD catheter/arteriovenous fistula (AVF) care.
With the use of a multidisciplinary team approach, which includes engagement of families/caregivers, and quality improvement methodology to increase implementation of these best care bundle practices, the SCOPE Collaborative has been able to improve patient outcomes. SCOPE centers have achieved not only increased implementation of and maintained high levels of compliance with PD-related best care practices but also ongoing and sustained reduction in infection rates over 7 years since inception, with a decrease in annualized peritonitis rates from 0.53 infections per patient-year pre-launch to 0.38 at 36 months and 0.30 at 84 months post-launch (3). They have also successfully demonstrated improvement in catheter care bundle compliance for HD and a significant reduction in the rate of catheter-associated bloodstream infection (CA-BSI) in children on maintenance HD (4).
Children with ESKD represent an especially vulnerable subset of the overall ESKD population. Their care is different from their adult counterparts. Pediatric ESKD care is centered on promoting growth and development while minimizing potential complications, recognizing an ongoing and future need for specialized medical care as these children continue into adulthood. Children with ESKD require special attention to nutritional needs and optimal management of dialysis, anemia, and bone-mineral health to foster appropriate growth and maturation. Fundamental to their care is an interdisciplinary team with pediatric expertise that includes medical providers and a social worker, dietitian, nurse, child life specialist, quality-of-life coordinator, school liaison, and psychologist dedicated to promoting the medical, psychosocial, and scholastic growth of children on dialysis. The social worker, quality-of-life coordinator, and school liaison work closely with families and school districts to ensure individualized learning plans and obtain accommodations and additional resources to promote scholastic growth. Mental health providers play a key role in providing coping skills and support during this vulnerable period. A child life specialist interacts directly with the child for support and engagement during dialysis sessions and clinic visits as well as preparation for procedures such as fistula creation and cannulation (Figure 1). Different media, such as pets, music, and art therapy, are also often used to assist with emotional expression and improve mood and adherence during therapy. Members of this team, with the adult caregivers and inclusion of the children in a developmentally appropriate manner, help define goals of care and guide medical decision-making (5).

Pediatric Dialysis Care: A Brief Update
Citation: Kidney News 13, 6
PUV, posterior urethral valve; ARPKD, autosomal-recessive polycystic kidney disease; GN, glomerulonephritis; FSGS, focal segmental glomerulosclerosis; MPGN, membrano proliferative GN; MN, membranous nephropathy; IgA, immunoglobulin A; RPGN, rapidly progressive GN; HUS, hemolytic uremic syndrome.
Pediatric Dialysis Care: A Brief Update
Citation: Kidney News 13, 6
PUV, posterior urethral valve; ARPKD, autosomal-recessive polycystic kidney disease; GN, glomerulonephritis; FSGS, focal segmental glomerulosclerosis; MPGN, membrano proliferative GN; MN, membranous nephropathy; IgA, immunoglobulin A; RPGN, rapidly progressive GN; HUS, hemolytic uremic syndrome.Pediatric Dialysis Care: A Brief Update
Citation: Kidney News 13, 6
PUV, posterior urethral valve; ARPKD, autosomal-recessive polycystic kidney disease; GN, glomerulonephritis; FSGS, focal segmental glomerulosclerosis; MPGN, membrano proliferative GN; MN, membranous nephropathy; IgA, immunoglobulin A; RPGN, rapidly progressive GN; HUS, hemolytic uremic syndrome.Continued advances in dialysis care and prevention of complications related to ESKD and dialysis have led to better survival for pediatric patients on dialysis. Hence, the focus on their pediatric care is crucial for their future potential productivity as adults.
References
- 1.↑
United States Renal Data System. USRDS Annual Data Report: Epidemiology of Kidney Disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2020. https://adr.usrds.org/2020
- 2.↑
Querfeld U, Schaefer F. Cardiovascular risk factors in children on dialysis: An update. Pediatr Nephrol 2020; 35:41–57. doi: 10.1007/s00467-018-4125-x
- 3.↑
Marsenic O, et al. Tunneled hemodialysis catheter care practices and blood stream infection rate in children: Results from the SCOPE Collaborative. Pediatr Nephrol 2020; 35:135–143. doi: 10.1007/s00467-019-04384-7
- 4.↑
Neu AM, et al. Continued reduction in peritonitis rates in pediatric dialysis centers: Results of the Standardizing Care to Improve Outcomes in Pediatric End Stage Renal Disease (SCOPE) Collaborative. Pediatr Nephrol [published online ahead of print March 1, 2021]. doi: 10.1007/s00467-021-04924-0; https://link.springer.com/article/10.1007/s00467-021-04924-0
- 5.↑
Chand DH, et al. Dialysis in children and adolescents: The pediatric nephrology perspective. Am J Kidney Dis 2017; 69:278–286. doi: 10.1053/j.ajkd.2016.09.023