Trends in Utilization of Specialty Care Centers in California for Adults With Congenital Heart Disease Susan M. Fernandes, LPD, PA-Ca,b,c,*, Lisa J. Chamberlain, MD, MPHc,d, Stafford Grady, Jr, MDa, Olga Saynina, MA, MBAc, Alexander R. Opotowsky, MD, MPHe, Lee Sanders, MD, MPHc,d, and Paul H. Wise, MD, MPHc,f The American College of Cardiology and American Heart Association guidelines recommend that management of adult congenital heart disease (ACHD) be coordinated by specialty ACHD centers and that ACHD surgery for patients with moderate or complex congenital heart disease (CHD) be performed by surgeons with expertise and training in CHD. Given this, the aim of this study was to determine the proportion of ACHD surgery performed at specialty ACHD centers and to identify factors associated with ACHD surgery being performed outside of specialty centers. This retrospective population analysis used California’s Office of Statewide Health Planning and Development’s discharge database to analyze ACHD cardiac surgery (in patients 21 to 65 years of age) in California from 2000 to 2011. Designation as a “specialty ACHD center” was defined on the basis of a national ACHD directory. A total of 4,611 ACHD procedures were identified. The proportion of procedures in patients with moderate and complex CHD delivered at specialty centers increased from 46% to 71% from 2000 to 2011. In multivariate analysis among those discharges for ACHD surgery in patients with moderate or complex CHD, performance of surgery outside a specialty center was more likely to be associated with patients who were older, Hispanic, insured by health maintenance organizations, and living farther from a specialty center. In conclusion, although the proportion of ACHD surgery for moderate or complex CHD being performed at specialty ACHD centers has been increasing, 1 in 4 patients undergo surgery at nonspecialty centers. Increased awareness of ACHD care guidelines and of the patient characteristics associated with differential access to ACHD centers may help improve the delivery of appropriate care for all adults with CHD. Ó 2015 Elsevier Inc. All rights reserved. (Am J Cardiol 2015;115:1298e1304) There are >1 million adult patients with congenital heart disease (CHD) in the United States.1 Many of these patients require repeat surgical intervention in adulthood. As this patient population ages and increases in size, we would expect the number of adult CHD (ACHD) surgical procedures to increase as well. However, a review of the annual surgical volume of the self-designated ACHD centers in the United States suggests that the number of ACHD procedures being performed is far less than expected. Despite previously published guidelines in 2001 and 2008 recommending that health care for patients with ACHD be coordinated by specialty ACHD centers and that ACHD surgery be performed by surgeons with expertise and training in CHD,2,3 it is possible that many ACHD operations are occurring at nonspecialty centers. To provide empirical insight into these issues, we Divisions of aPediatric Cardiology, dGeneral Pediatrics, and fNeonatology, Department of Pediatrics, bDivision of Cardiovascular Medicine, Department of Medicine, and cCenter for Health Policy, Primary Care Outcomes Research Center, Stanford University, Palo Alto, California and e Boston Adult Congenital Heart Service, Boston Children’s Hospital and Brigham and Women’s Hospital, Boston, Massachusetts. Manuscript received September 26, 2014; revised manuscript received and accepted February 3, 2015. See page 1304 for disclosure information. *Corresponding author: Tel: (650) 724-5554; fax: (650) 723-8115. E-mail address: [email protected] (S.M. Fernandes). 0002-9149/15/$ - see front matter Ó 2015 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.amjcard.2015.02.013

sought to describe trends in ACHD surgery in California, to identify the extent to which ACHD surgery was performed at designated ACHD specialty centers, and to identify characteristics associated with surgery being performed outside of specialty centers. Methods We performed a retrospective analysis of hospitalizations for ACHD surgery for discharges of patients 21 to 65 years of age from 2000 and 2011, using unmasked patient discharges, using data from the Office of Statewide Health Planning and Development. This database consists of deidentified demographic, clinical, and administrative data from all acute care hospitals in California. The use of this data set to examine patterns of specialty care hospitalization has been previously described.4,5 Our study population was identified using a method similar to that of Karamlou et al.6 In addition to the 12 International Classification of Diseases, Ninth Revision (ICD9), codes used, we added 6 additional ICD-9 codes we believed would capture most ACHD diagnoses (Table 1). Ventricular septal defects associated with myocardial infarction were excluded. Other diagnoses, such as congenital aortic stenosis or regurgitation or pulmonary valve stenosis, were not included in the analysis given ambiguity in coding and variable complexity per guideline classification. ACHD www.ajconline.org

Congenital Heart Disease/Trends in Adult CHD Surgery Table 1 ICD-9 diagnostic codes and disease complexity classification ICD-9 Code

Diagnosis

Disease Complexity

745.0 745.10 745.11 745.12 745.19 745.2 745.3 745.4 745.5 745.6 745.61 746.01 746.1 746.2 746.70 747.0 747.10 747.41

Common Truncus Complete transposition of great vessels Double outlet right ventricle Corrected transposition of great vessels Other transposition of the great arteries Tetralogy of Fallot Common ventricle Ventricular septal defect Ostium secundum type atrial septal defect Endocardial cushion defects Ostium primum defect Atresia of pulmonary valve, congenital Tricuspid atresia and stenosis, congenital Ebstein’s anomaly Hypoplastic left heart syndrome Patent ductus arteriosus Coarctation of aorta (preductal) (postductal) Total anomalous pulmonary venous connection

Complex Complex Complex Complex Complex Moderate Complex Simple Simple Moderate Moderate Complex Complex Moderate Complex Simple Moderate Moderate

1299

surgical procedures were defined as open heart or thoracic surgery occurring in 1 of the 18 selected ICD-9 diagnostic groups. The ICD-9 procedural codes for cardiac transplantation (37.5x, 37.6x) and surgically coded procedures performed with a transcatheter approach were excluded from the data set. All CHD ICD-9 diagnosis codes were crossreferenced with ICD-9 procedural codes, and inference was made for CHD diagnosis by type of cardiac surgery by the method previously described.7 The most complex CHD lesion noted was used for grouping as simple, moderate, or complex according, to the extent possible with ICD-9 codes, to 2008 guidelines for the management of adults with CHD (Table 1).3 Patient-level covariates included age, gender, race, ethnicity, payer mix, distance to specialty ACHD center (centroid of ACHD center ZIP code to centroid of patient ZIP code), and presence of morbidities as previously defined by Elixhauser et al.8 The specialty ACHD center designation was based on program or institution listing in a national, volunteer clinical ACHD program registry. The directory is maintained and

Table 2 Characteristics associated with discharge from a specialty adult congenital heart center: univariate analysis Table 1

Total ¼ 4,611 N

Age years: (mean sd) Gender Male Female Race Asian Black Hispanic Other/Unknown White Number of co-morbidities 0 1 2 3þ Payer Private: HMO Private: Non-HMO Public/Other Missing Region Bay Area Farm Belt Los Angeles (LA) North and Mountain Southern California without LA Distance to nearest ACHD center 0-5 6-10 11-20 21-40 41þ Missing Vital status at end of hospitalization Alive Dead

Non-specialty ¼ 2,897 N

46.2112.7

(%)

ACHD specialty ¼ 1,714 N

48.0912.2

P value

(%)