THE PEDIATRIC CARDIAC CARE CONSORTIUM - REVISITED

Background: The Pediatric Cardiac Care Consortium (PCCC) is a collabor ative, voluntary effort of pediatric cardiologists to gather and analy ze data regarding operative results. Methods: PCCC collects informatio n on each child who undergoes cardic catherization, electro-physiologi c 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, patie nt profiles, and variations in adjusted mortality-are presented. Resul ts: Since PCCC's founding in 1982, overall operative mortality has dec reased from 14% to 4.1% in 1991 (22% to 8.2% for infants). In one cent er, for example, in which overall and infant operative mortality dropp ed in seven years from 15% and 28% to 8% and 15%, respectively, the ca rdiologists and surgeon used the PCCC data to identify areas of weakne ss and adopt new diagnostic and treatment methods for particular cardi ac conditions. They now opt for safer initial operative approaches. An other center reduced its operative mortality for coarctation of the ao rta in infants after data review led to a decision to be more aggressi ve in early referral of infants for operations and for changes in peri operative management. Discussion: Use of the study group model, in whi ch key members work with their institution to use and interpret the da ta, has been an effective strategy for data dissemination. The PCCC is exploring the concept of ''model centers,'' which would probably be p rocedure specific. With additional funding, the database could be expa nded to include morbidity measures, functional outcome, and long-term follow-up.