3:36 PM Abstract No. 75 Practice and institutional benefits from a Hereditary Hemorrhagic Telangiectasia Center of Excellence: practice patterns, services generated, and estimated downstream revenue from the Johns Hopkins Hereditary Hemorrhagic Telangiectasia Center of Excellence

Though Hereditary Hemorrhagic Telangiectasia (HHT) Centers of Excellence have been shown to provide HHT patients with effective multidisciplinary care, their positive effect on an individual practice and institution is not often discussed. We highlight the effects of an organized HHT center of excellence on the practice patterns and services generated. Patients who presented to our center of excellence between 2009 and 2013 were included in this IRB approved retrospective review. Patients underwent phone screening by a dedicated nurse coordinator trained in HHT diagnostic criteria. Patients with HHT were provided with an intake visit with pulmonology, then were triaged to subspecialty care. All patients underwent our standard pulmonary and cerebral arteriovenous malformation (AVM) screening. All procedures, office visits, and imaging studies related to HHT performed since the patient’s presentation to our center of excellence were recorded. A total of 286 patients enrolled between 2009-2013 (74 pediatric and 212 adults) were included in this study. The approximate cost of our dedicated nurse coordinator per year is $80,000 with fringe benefits included. From pulmonary arteriovenous malformation screening alone, this cohort generated 213 agitated saline Echos, 155 chest CTAs, 105 referrals to interventional radiology, 94 pulmonary angiography procedures, and 84 PAVM embolization procedures. In total our PAVM screening paradigm generated approximately $1.85 million in gross revenue or $370,000 per year (professional and technical fees summed). Cerebral AVM screening and treatment services and additional referrals to other subspecialists for indications such as epistaxis, gastrointestinal bleeds, and dermatologic were also analyzed. The Johns Hopkins HHT Center of Excellence has a history of providing high quality multidisciplinary care to patients with HHT; however, its benefits to our practice and institution are not often highlighted. Our center of excellence has provided robust referrals to multiple departments while only requiring initial capital investment for a dedicated nurse coordinator, which is paid for by PAVM screening and treatment alone year to year.