Trends in treatment and outcomes of survival of adolescents initiating end-stage renal disease care in the United States of America

Abstract

This study characterizes treatment and outcome trends of adolescent patients initiating renal replacement therapy in the USA from 1978 to 2002. This is a retrospective analysis of data from the US Renal Data System (USRDS) of incident end-stage renal disease (ESRD) patients, ages 12 years through 19 years, initiating renal replacement therapy between 1978 and 2002. Survival analyses were conducted from either the first date of kidney failure or date of transplantation until death or 31 December 2002. The ESRD incidence per million adolescents increased from 17.6 in 1978 to 26.0 in 1990, with no change in incidence in the ensuing 12 years. Incidence was slightly higher among males than females and was twice as great in black than in white populations. The major cause of ESRD was glomerulonephritis followed by cystic/congenital diseases and focal segmental glomerulosclerosis (FSGS). Incidence increased with age, from 13.0 per million for children aged 13 years to 32.6 per million for 19 year olds. Three-quarters of all adolescent patients received at least one transplant, and one-fifth of patients received two or more transplants. Ten percent of incident adolescent patients received a preemptive transplant. The 10-year survival rate was lowest in the 1978-1982 incident cohort (77.6%) and improved to approximately 80% for later cohorts. Survival was better for younger adolescents, transplant recipients, preemptive transplant recipients, males, Caucasian, and Asian patients. The primary mode of renal replacement therapy is transplantation in most adolescent ESRD patients. The 80% 10-year survival rate for adolescent-onset ESRD is very good when compared with adult-onset ESRD. However, this represents a 30-fold increase in mortality compared to the general US adolescent population.

Transition from pediatric to adult renal services: a consensus statement by the International Society of Nephrology (ISN) and the International Pediatric Nephrology Association (IPNA)

“…The number of young patients graduating from paediatric to adult renal care has progressively increased due to improved management resulting in patient survival rates of 85-90% [1,2]. Adult renal services are being exposed to an increasing number of adolescent and young adult patients who have either transitioned from paediatric care or presented directly to adult services.…”

The State of U.S. Living Kidney Donors

“…L iving organ donors are the inspiration of transplantation, leading to earlier transplantation and better recipient survival (1)(2)(3)(4). This is particularly true for kidney transplantation, where 55,912 (49.5%) of the 112,948 kidney donors between 2000 and 2008 were living donors.…”

Invited Manuscript Poster on Renal-Related Education American Society of Nephrology, Nov. 16–21, 2010 Adolescents with Chronic Kidney Disease and Their Need for Online Peer Mentoring: A Qualitative Investigation of Social Support and Healthcare Transition

“…Restrictive diets, medication regimens, and, for some, dialysis schedules underscore how different adolescents with these conditions are from their healthy peers at a time when young people are particularly sensitive to peer group influences. [1][2][3] As a result, adolescents with CKD are more likely to be isolated from other peers who have CKD, develop non-adherent behavior with treatment recommendations, and are consequently at higher risk for poor outcomes such as transplant rejection. [4][5][6] It is no surprise then that some studies suggest that pediatric nephrologists believe many to all adolescents with chronic kidney failure are non-adherent in some fashion.…”