The pediatric cardiac care consortium--revisited

The Pediatric Cardiac Care Consortium (PCCC) is a collaborative, voluntary effort of pediatric cardiologists to gather and analyze data regarding operative results.

PCCC collects information on each child who undergoes cardiac catheterization, electrophysiologic study, or a cardiac operation, or dies with a cardiac malformation. The data are analyzed annually and individual reports are created for each center. Also, representatives from the centers meet annually, and data-on the major operative procedures, including risk factors, patient profiles, and variations in adjusted mortality-are presented.

Since PCCC's founding in 1982, overall operative mortality has decreased from 14% to 4.1% in 1991 (22% to 8.2% for infants). In one center, for example, in which overall and infant operative mortality dropped in seven years from 15% and 28% to 8% and 15%, respectively, the cardiologists and surgeon used the PCCC data to identify areas of weakness and adopt new diagnostic and treatment methods for particular cardiac conditions. They now opt for safer initial operative approaches. Another center reduced its operative mortality for coarctation of the aorta in infants after data review led to a decision to be more aggressive in early referral of infants for operations and for changes in perioperative management.

Use of the study group model, in which key members work with their institution to use and interpret the data, has been an effective strategy for data dissemination. The PCCC is exploring the concept of "model centers," which would probably be procedure specific. With additional funding, the database could be expanded to include morbidity measures, functional outcome, and long-term follow-up.