American Society of Pediatric Nephrology Position Paper on Linking Reimbursement to Quality of Care

he pediatric ESRD patient is a member of a unique sub- population of ESRD patients. The cause of ESRD in the pediatric patient differs markedly from the adult patient; treatment modality in the pediatric ESRD patient differs substan- tially from the adult patient; and outcomes such as growth, de- velopment, and school attendance are also unique to the pediatric ESRD patient. In addition, the pediatric nephrology workforce differs substantially from the internal medicine nephrology work- force, and the delivery of care to pediatric ESRD patients is rec- ognized to be more complex than the delivery of care to adult patients. The Center for Medicaid and Medicare Services (CMS) acknowledges the complex needs and labor-intensive nature of care of pediatric ESRD patients, and the CMS has had in place for several years a tiered physician reimbursement payment method based on age. Because of the unique characteristics of the pediatric ESRD population, any changes and alterations in reimbursement will need to take into consideration the multiple distinctive char- acteristics of this population of ESRD patients. In anticipation of a move toward linking reimbursement to quality of care, the American Society of Pediatric Nephrology (ASPN) formulated this document to address a number of con- cerns. We review the epidemiology and demographics of pediat- ric ESRD, the unique characteristics of the pediatric ESRD patient, the pediatric nephrology workforce, and access of the pediatric ESRD patient to care. We also review the current state of guide- lines for pediatric ESRD patients that are largely opinion based because of the few quality measures that have actually been in- vestigated in pediatric ESRD patients. Finally, we discuss the potential effects of linking reimbursement to quality of care in pediatric patients and the current lack of tools and methods to establish such a policy in pediatric ESRD patients, and we offer our expertise in addressing the deficit of knowledge of many aspects of pediatric ESRD care. Epidemiology and Demographics of Pediatric ESRD Since 1988, the United States Renal Data System has pro- duced an annual report on ESRD, including a pediatric section on ESRD. This report provides valuable information on the demographics, epidemiology, modes of therapy, morbidity, and mortality in pediatric patients with ESRD (1,2). The North American Pediatric Renal Transplant Cooperative Study (NAPRTCS) was organized in 1987 to obtain data on all pedi- atric renal transplant recipients in North America; NAPRTCS was subsequently expanded to include pediatric dialysis pa- tients in 1992, and the registry was expanded further to include pediatric patients with chronic renal failure (estimated GFR 75 ml/min per 1.73 m2 as calculated by the Schwartz formula) in 1994 (3). These two databases of pediatric ESRD patients provide information of the demographic characteristics; modes of therapy; morbidity and mortality; and use of Epogen, growth hormone, and other therapies for children with chronic kidney disease. These databases point out that the cause of ESRD in the pediatric patient differs considerably from the adult dialysis patient.