Incorporation of a Comprehensive Pediatric Thrombosis Program into the Multidisciplinary Care Team for Children with Congenital Heart Disease: A Prospective Cohort Study.

BACKGROUND: Over the last 10 years, children with congenital heart disease (CHD) have been experiencing increased survival due to diagnostic and surgical techniques. However, associated with this is a requirement for prolonged central venous access which has serious associated sequelae, of which thrombosis is one of the most important. In a busy comprehensive cardiovascular program, the diagnosis, treatment and management of children with or at risk for thrombosis is extremely demanding and constantly changing based on current evidence based recommendations. The Stollery Children’s Hospital, a member of the Western Canadian Children’s Heart Network (WCCHN), is the cardiovascular surgical centre for children with CHD from British Columbia, Manitoba, Alberta, and Saskatchewan An expert Pediatric Thrombosis Team has been incorporated into the multi disciplinary management of children with CHD. This team is dedicated entirely to the diagnosis, management and long term followup of children requiring anticoagulation.

MATERIALS/METHODS: A standard approach to the diagnosis, management and long term followup of children with CHD with or at risk for thrombosis was initiated. The Pendragon data base was custom designed to prospectively collect the following data on all children: demographics, treatment and long term outcome.

RESULTS: Since the inception of the Thrombosis service (Oct 2003) there have been 325 children who required cardiac surgery with 40% (n=129) of these children requiring Thrombosis consultation. The 4 most common causes for Thrombosis referral have been primary prophylaxis post CHD surgery including mechanical valves, Blalock Taussig shunts, and Fontan procedures, 51% (n=66), suspected CVL related thrombosis 26% (n=33), arterial catheter related thrombosis (catheterization or monitoring) 16% (n=19), and extracorporeal membranous oxygenation 9% (n=11). By Oct 2004, it is anticipated that 300 children will have been consulted on.

CONCLUSIONS: The 1^st year results of the data collected on this prospective cohort will be presented including demographics, reason for anticoagulation, diagnosis, and long term outcome.