Cardiovascular genetics—redefining the role of the clinical geneticist

Abstract

In an effort to find a solution for the problem of providing comprehensive genetic services in the current managed care environment, The Golisano Children's Hospital at Strong, University of Rochester Medical Center decided to test a new role for the clinical geneticist. A board certified clinical geneticist/dysmorphologist was hired to build a new cardiovascular genetics program within the division of pediatric cardiology. This is a novel approach since most divisions of pediatric cardiology do not have a specifically designated geneticist as a member of their division. As one of seven cardiovascular genetics clinics in the United States (nine world wide) the Cardiovascular Genetics Program at The Children's Heart Center provides genetic services to a targeted, complex group of patients. In the first 9 months, the overall utilization (number of patient slots available/number of patients seen) of the clinic is 81% with a show rate of 85%. The program provides consultative services to pediatric cardiology as well as pediatric and adult medicine within the hospital and the community. The pediatric cardiovascular surgery service is regionalized including patients from Syracuse, Rochester and Buffalo, New York areas. The Cardiovascular Genetics Program offers initial, second opinion and follow-up evaluations to this entire upstate New York region. As a consultative service the Program supplies the PCP and/or surgeon with a comprehensive management plan in addition to the diagnostic evaluation. The PCP/surgeon executes the plan with support from the genetics staff as needed. It is the comprehensive nature of the management plan provided to the caregivers that improves quality of care and thus, outcome, even when a definitive diagnosis has not been established.