1. ACHD Patients Should Receive Treatment in Adult Institutions Society of Thoracic Surgeons Adult Cardiac Surgery Database reports 39,872 adults undergoing congenital heart operations between 2000 – 2009. Estimates of total adult survivors with CHD up to year 2000 – 787,000. The number of hospital admissions for ACHD in the U.S. more than doubled between 1998 and 2005. Hospital charges attributable to these admissions have grown even more dramatically. Estimated total national charges for these hospitalizations increased 357% from $691 million in 1998 to $3.16 billion in 2005 (in inflation-adjusted 2005 dollars). Outcomes in adult congenital heart surgery: Analysis of the Society of Thoracic Surgeons Database. J Thorac Cardiovasc Surg 2011;142:1090-1097 Trends in Hospitalizations for Adults With Congenital Heart Disease in the U.S. J Am Coll Cardiol, 2009; 54:460-467, doi:10.1016/j.jacc.2009.04.037

2. Common preoperative risk factors include: Noncardiac abnormalities (17%) Arrhythmia (14%). Overall, in-hospital mortality was 2.1% 27% had 1 or more complication, and median length of stay was 5 days. Most adult congenital heart operations listed are performed in the third to fourth decades of life; approximately half are for right heart pathology or arrhythmia. Many patients have complications, but mortality is low with the exception of those undergoing Fontan revision/conversion. Repeat adult procedures after reparative surgery for congenital heart disease are primarily electrophysiological, valvular, and noncardiovascular

3. Because of the complexity of their care and the specialized nature of their disease and repairs, it is recommended that adults with congenital heart disease be cared for in specialized clinics for adults with congenital heart disease at larger medical centers. Concerns for adults with congenital heart disease:  Acquired cardiovascular disease, such as ischemic heart disease and systemic hypertension, stroke, and infections such as endocarditis.  Acquired adult diseases of adult onset diabetes, acquired pulmonary and vascular disease, and importantly kidney disease will have more expertise around an adult hospital than a pediatric one.  Difficulties for adult patients to find cardiologists familiar with their particular anatomy and problems.  Surgeons with appropriate training and skills. Comfort in adult environment.  Low volume centers = higher mortality Task Force 1: the changing profile of congenital heart disease in adult life J Am Coll Cardiol, 2001; 37:1170-1175 © 2001 by the American College of Cardiology Foundation © 2001 by the American College of Cardiology Foundation

4. Surgical team and management: Familiarity with procedures, routines, and equipment can all influence outcomes. Mortality was similar at the adult and pediatric hospitals (4.3% versus 5.1%), Markedly higher in the adult surgeon group compared with the pediatric surgeon group (15.2% versus 2.7%; p = 0.0008). By multivariate analysis, risk factors for mortality included : Older age at the time of surgery (p = 0.028) Surgery performed at a children's hospital (p = 0.013) Surgery performed by an adult heart surgeon (p = 0.0004) CONCLUSIONS: Caring for an anticipated aging adult congenital population with increasingly numerous coexisting medical problems and risk factors is best facilitated in an adult hospital setting. Also, when surgery becomes necessary, these adult patients are best served by a congenital heart surgeon. Adult congenital heart surgery: adult or pediatric facility? Adult or pediatric surgeon? Ann Thorac Surg. 2009 Mar;87(3):833-40.Ann Thorac Surg.

5. 3.1% of congenital heart surgery admissions to pediatric hospitals were adults. The threshold for high resource use of total hospital charges was > $213,803 High resource use had median total charges of $299,901 vs. $82,738 for non- high resource use admissions. High-resource surgeries were linked to increased mortality rates compared with surgeries that were less resource-intensive. Cath lab workup and interventions Congenital heart surgery admissions counted for 34% of charges, whereas high resource use admissions comprised 10% of admissions. Mortality rate for high resource use was 16% vs. 0.7% for others (P<.001) Kim YY. Circ Cardiovasc Qual Outcomes. 2011;doi:10.1161/CIRCOUTCOMES.111.963223. Adult congenital heart surgery in pediatric hospitals used substantial resources:

6. Very important -- nursing routines: Standard of care is up and out of bed into the chair the day after surgery at an adult hospital. That rarely happens in a children's hospital. Has more to do with the "culture" than a specific nursing deficiency. Pain is perceived differently. “Nurse Ratchet” at adult hospital tells the patients to grin and bear it -- get off your ass and walk. Doesn’t happen at a children’s hospital. Early ambulation and mobility are the single most important thing after chest surgery in adults. The culture prevents it from happening at children's hospitals.

7. Perfusion related factors to recognize: Operative equipment – disposables & hardware Balloon pumps – adult vs pediatric centers VAD – routine use & (state of the art) impella pumps many adults considered LVAD stdby – bridge to transplant Patient management – different populattion

8. Social stuff: Most adult patients don't want to bunk up next to a 5 month old. Although they're used to hand holding, they want to be taken seriously and considered adults. They want the nurses and doctors to talk to them, not their parents.

9. Because of the complexity of their care and the specialized nature of their disease and repairs, adults with congenital heart disease should be cared for in specialized centers for adults by congenital heart surgeons.