Congenital Heart Disease
Trends in Utilization of Specialty Care Centers in California for Adults With Congenital Heart Disease

https://doi.org/10.1016/j.amjcard.2015.02.013Get rights and content

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.

Section snippets

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

Results

We identified 4,611 discharges that met the inclusion criteria. The discharge characteristics and a comparison of these characteristics between specialty and nonspecialty centers are listed for the entire cohort in Table 2. In-hospital mortality was uncommon for specialty ACHD centers and nonspecialty centers (3.2% and 2.9%, respectively, p = 0.58).

Of the 4,611 discharges, 753 ACHD procedures (16%) were performed in patients with moderate or complex CHD. The discharge characteristics and a

Discussion

Advances in the medical and surgical management of patients with CHD have enabled increased survival to adulthood.9 The ACHD population is aging and becoming increasingly complex, in terms of CHD diagnoses and medical co-morbidities.10, 11 Many of these patients remain at risk for morbidity and mortality because of their underlying CHD and will require repeat intervention in adulthood.12 This study describes trends in ACHD surgery from 2000 to 2011 in California and identifies characteristics

Acknowledgment

The authors would like to acknowledge Jonathan Mayo, MPH, Kirstie MacMillen, BS, CCRC, Miranda Zinsman, BA, and Doff McElhinney, MD, for their time and efforts in this project.

References (22)

Cited by (16)

  • Laparoscopic Surgery Requiring Abdominal Insufflation in Patients With Congenital Heart Disease

    2022, Journal of Cardiothoracic and Vascular Anesthesia
    Citation Excerpt :

    The high-volume centers were significantly more likely to have operated on patients with single-ventricle circulation than the low-volume centers. Recent evidence suggests benefits in regionalization of care for patients with CHD1,23; indeed, one recent study from California reported an increase from 46%-to-71% of patients receiving care at dedicated ACHD centers between 2000 and 2011.24 The regionalization of care, in combination with sampling strategy of the HCUP-NIS database, may have affected the temporal trends observed in this study.

  • Trends in Patient Characteristic, Cost, and Mortality Among Mechanically Ventilated Adult Patients With Congenital Heart Disease in the United States

    2022, CJC Open
    Citation Excerpt :

    This has been attributed to the improved management of mechanically ventilated patients through increased knowledge of ventilator settings18,19 and the incorporation of weaning protocols.20,21 Other potential contributors include better long-term outcomes from enhanced medical and surgical approaches as well as clinicians’ increased comfort and familiarity in managing ACHD, particularly at established centres of excellence.22 Within the limitations of this study’s methodology, the cost per ACHD requiring MV remained stable over the 10-year span (P = 0.42).

  • Access to cardiac surgery centers for cardiac and non-cardiac hospitalizations in adolescents and adults with congenital heart defects- a descriptive case series study

    2021, American Heart Journal
    Citation Excerpt :

    Lapses in care have been linked to a number of adverse outcomes, including an increase in concomitant morbidities, a reduction in reported quality of life, and greater mortality.14 Previous studies have suggested that proximity to care may be barrier to care, potentially resulting in such lapses.15,16 The impact of patient residential location, a key factor determining adequate access to care17,18 on healthcare utilization,19-22 has not been investigated extensively among people with CHDs.

  • Access and Delivery of Adult Congenital Heart Disease Care in the United States: Quality-Driven Team-Based Care

    2020, Cardiology Clinics
    Citation Excerpt :

    Even without a formal recognition of CV subspecialty expertise in ACHD, the concept of regional centers began to develop organically after the 2000 Bethesda Conference.26 In 2010, there were approximately 100 US ACHD centers; however, these centers were self-described centers of excellence.27 The centers represented a broad spectrum of expertise, resources, and clinical volume, making the ability to demonstrate that these types of specialized centers improved patient outcomes.

  • Epidemiology of ACHD: What Has Changed and What is Changing?

    2018, Progress in Cardiovascular Diseases
    Citation Excerpt :

    The early data was based on extrapolation of pediatric data into adulthood, with assumptions made about the likelihood of survival based on the severity of the underlying defect.10,32 More recent data has focused on increased hospitalizations and resource utilization of the ACHD population over time.33,34 While there remain significant limitations of these approaches, these endeavors play an important role in drawing attention to the size of the ACHD population and in demonstrating the need for more resources to serve this group.

View all citing articles on Scopus

See page 1304 for disclosure information.

View full text