Using the UNOS/SRTR and PHTS Databases to Improve Quality in Pediatric Cardiac Transplantation

Abstract

Data collection and dissemination have been a part of the US transplant experience since its earliest days. As part of this process, the United Network for Organ Sharing (UNOS) has provided open access to its data. In addition, multiinstitutional groups such as the Pediatric Heart Transplant Study (PHTS) have collected data of particular interest to pediatric and congenital transplants. This wealth of data enables quality improvement along several pathways including individual program assessment and improvement and development of both structure and process measures for ongoing improvement. Extensive literature exists utilizing these data, but must be read critically, recognizing the limitations presented by missing variables (whether uncollected or collected but left blank), reproducibility, and small sample sizes among pediatric patients. However, despite these limitations, opportunity continues to exist to apply these data sets to ongoing questions of quality and optimize organ allocation and long-term survival among pediatric patients with heart failure.