Tampa Bay Adult Congenital Heart Disease Clinic presents

Heart Health through Education

Challenges in Establishing a Program for Adults with Congenital Heart Disease – A Tampa Bay Experience.

Hector L. Fontanet MD, FACC

Adult Cardiologist Florida Medical Clinic

Richard M. Martinez, MD, FACC

Director of Pediatric Cardiology, ACH

Clinical Professor of Pediatrics, USF

             In Tampa Bay, Florida, pediatric cardiology care began in the 1970s with the arrival of two pediatric cardiologists – one to St. Petersburg and one to Tampa.  Approximately 20 years later, one pediatric cardiologist in St. Petersburg and one adult cardiologist in Tampa recognized a need for specialized care for grownups with congenital heart disease, as described and recommended by the 22^nd and 32^nd Bethesda Conferences (Ref. 1, 2) as well as written about by groups in Los Angeles, Toronto, England and other parts of the world.

            In 1993, we established the Tampa Bay Adult Congenital Heart Disease Clinic (ACHD) in affiliation with the Congenital Heart Institute of Florida (CHIF) to fulfill the need of our community to provide specialized care for adults with congenital heart disease and to enhance the didactic requirements of the adult Cardiology Fellowship Program at the University of South Florida College of Medicine.  Initially, the clinic was held monthly, but as the program grew, clinics were added and are now held weekly in Tampa and St. Petersburg.

            Our first challenge was to identify and recruit the efforts of qualified congenital heart disease specialists available in our community.  Our local congenital and adult cardiac surgeons, electrophysiologists, high-risk perinatalogists and other supporting care physicians soon joined efforts in a loose affiliation and cooperative effort to provide expert care.  This professional collaboration created the critical mass necessary to spark the growth of the Tampa Bay ACHD Clinic through referrals and community awareness.  Patients have been transitioned to the ACHD clinic mainly from our pediatric program, usually between 18-21 years of age, and are generally referred to the clinic from adult cardiologists, obstetricians/gynecologists, family practitioners and internists in the Tampa Bay and surrounding areas.

            At present, we serve approximately 400 adults with congenital heart disease in three outpatient locations.  In our experience, providing service at the point of care greatly facilitates access and improves compliance with scheduled follow-up. These private practice outpatient based clinics provide a dedicated nursing staff as well as comprehensive non-invasive diagnostics, laboratory and diagnostic x-ray that are provided at the time of service.  Since our clinic is not institution based, we are also able to provide rapid access to cardiac and urgent medical care to our patients.  Coordination of care with our specialists and outpatient diagnostic facilities remains problematic and we hope to overcome this with the addition of care coordinators and a well-established referral pattern.

            If we look at the demographics of the clinic we can see that the clinic population is relatively young, with a large percentage 20-29 years of age, and a smaller percentage 30 to 59 years of age (Fig 1).  The clinic composition of the patients is quite similar to other adults with congenital heart disease clinics in terms of what is in the literature (Ref. 3).  41% of the patients are categorized from four groups: Tetralogy of Fallot, tricuspid atresia/single ventricle and transposition of the great vessels (Fig. 2).  The majority of the clinic patients are functional in terms of the New York Heart Association Class (Fig 3). Also, examination of the ACHD clinic population shows that 71% of the patients are employed.  We have been struck by the fact that the majority of patients want to have a “normal” life.  Although most have insurance, Medicare or Medicaid (Fig 4), there are a substantial percentage of uninsured patients, about 21%. Lack of funding remains a major hindrance for these patients when complex outpatient diagnostic testing is necessary outside of our practice and when elective admission to hospitals for invasive testing is required; hospital social workers have been assisting and supporting the program. The Tampa Bay ACHD Clinic, however, has committed to provide care and diagnostic testing within our facilities to our non-funded patients.   

            Inpatient care for ACHD has not been completely centralized.  This is a direct result of congenital cardiac surgery, transplant and high-risk obstetrical services, not being available inclusively in one center.  Currently these services are located at geographically different institutions, within our community – namely All Children’s Hospital and Bayfront Medical Center in St. Petersburg; and St. Joseph’s Children’s Hospital and Tampa General Hospital in Tampa.            While inpatient services are somewhat decentralized, the best care available and the specific needs of the patient drive the selection of a particular hospital.  Other rationale includes patient preference due to geographic considerations or the requirements of insurance contracts. Although cumbersome for the ACHD provider and frequently results in conflicting schedules, the final result assures the best match for a particular patient or condition with the appropriate hospital facility within our community.  For such, the addition of care coordinators to our three outpatient facilities will further assist in streamlining the inpatient experience for both the patient and the patient’s family.

            Inpatient nursing traditions have also had to adjust to the needs of this population.  Nurses in the pediatric setting are not always trained in treating adults and conversely, adult nurses are not accustomed to treating the ACHD patient.

            In spite of the challenges, the ACHD program at All Children’s Hospital has provided reassuring outcomes.  The catheterization, interventional, electrophysiology procedures in ACHD patients make up about 10% of the total procedure. The mortality for the above procedures in the ACHD population so far this decade is zero.  Also, the surgical outcomes have been reassuring. The ACHD volume has comprised 6% of the total surgical volume over the decade with a low mortality 2.4%. Figure 5 illustrates the surgical mortality at All Children’s Hospital per age group.

            For the future of the Tampa Bay ACHD, we will place effort on expanding our inpatient and outpatient infrastructure, work towards centralization of inpatient services and expand the role of our care coordinators in each of our locations. Education of our patients to continue to come in and see us routinely even as they have grown up and continue to feel well is an additional goal of the program. Additionally, it will be important to recruit adult cardiologists with combined training in medicine and pediatrics or adult cardiologists with pediatric cardiology backgrounds as described (Ref. 4) in order to expand the Tampa Bay Congenital Heart Disease Clinic and continue its services far into the future. The adult with congenital heart disease may not truly be “born to be bad” as Dr. Warnes has suggested (Ref. 5), but it is clear that the vast majority of the patients are not “cured” and will require comprehensive care from specialists like us throughout their lives.

Figures

References:

(1)     Perloff JK. 22^nd Bethesda Conference: Congenital heart disease after childhood: an expanding population. J Am Coll Cardiol. 1991; 18 (2):312-336.

(2)     Webb GD, Williams RG. 32^nd Bethesda Conference: Care of the adult with congenital heart disease. J Am Coll Cardiol. 2001; 37 (5):1162-1198

(3)     Williams RG, Child JS, Kuehl KS, Myerson M, Sahn DJ, Webb CL. Report of the national heart, lung and blood institute working group on research in adult congenital heart disease. J Am Coll Cardiol. 2006; 47 (4):701-7

(4)     Deanfield J, Thaulow E, Warnes C, Webb G, Kolbel F, Hoffman A, Sorenson K, Kaemmerer H, Thilen U, Bink-Boelkens M, Iserin L, Daliento L, Silove E, Redington A, Vouhe P. The taskforce on the management of grown up congenital heart disease of the European society of cardiology. Eur Heart J. 2003; 24 (11):1035-1084

(5)     Warnes C. The adult with congenital heart disease: born to be bad? J Am Coll Cardiol. 2005; 46; 1-8