Individuals with adult congenital heart disease (ACHD) had better outcomes at the highest volume ACHD transplant centers, suggesting that regionalization of services might improve overall results.
One-year post-transplant mortality was lowest in the highest volume ACHD centers compared with all other transplant centers in the same United Network Organ Sharing (UNOS) region, including some who were not ACHD or Adult Congenital Heart Association (ACHA) accredited (hazard ratio [HR], 0.66; P = .038).
Their findings "suggest that expertise in congenital heart anatomy and management is important for the care of these complex CHD patients with advanced heart failure," Vidang Nguyen, MD, from the University of Washington, Seattle, and colleagues write.
Results of this new study were published in the December 10 issue of the Journal of the American College of Cardiology (JACC).
Nguyen et al studied 1746 ACHD heart transplant candidates 18 years of age or older who were listed for transplantation between January 2000 and July 2018. Of these, 1006 (57.6%) received transplants at 124 centers, and 16.5% died before transplant or were removed from the waitlist for being too ill. The remainder were still awaiting transplant, deemed medically unsuitable for transplant, or were delisted because their condition improved.
Transplant volumes varied widely between centers. Only three centers performed 40 or more ACHD transplants over the span of 18 years, and these centers accounted for 14.7% of transplants in the study cohort.
The 11 highest volume ACHD centers performed just over one third (34.2%) of all ACHD transplants, and only 13 of 124 centers transplanted more than 20 adults with CHD over the 8-year time period.
On the other hand, 49 transplant centers (39.5%) performed one or fewer heart transplants over 5 years, and these centers accounted for 12.4% of all ACHD heart transplants.
Forty-five of the 124 transplant centers were ACHA accredited or affiliated with an ACHA-accredited hospital.
ACHA-accredited centers are required to have a multidisciplinary team with multiple board-certified ACHA-accredited cardiologists, including heart failure specialists, congenital heart surgeons, and interventional services provided by specialists in CHD.
The researchers also found that, after adjustment, waitlist mortality was lower at ACHA-accredited centers (HR, 0.73; P = .02) compared with non-ACHA centers.
Although the study was restricted to patients 18 years of age or older, 10.4% of patients were listed for transplant at pediatric hospitals and 6.2% were ultimately transplanted there.
One-year mortality was higher in these patients (HR, 2.38; P < .0001), although waitlist mortality did not differ significantly (HR, 0.65; P = .08). Nguyen et al noted that the small number of pediatric centers in the sample may have skewed these results.
In an editorial that accompanied the paper, Carl Backer, MD, Lurie Children's Hospital of Chicago, and colleagues point to the "somewhat discordant findings" of waitlist vs post-transplant outcomes of these adults treated at pediatric centers.
"The waitlist mortality was lower among this group, but the risk of graft failure was higher," they write. "These transplant recipients were on average 14 years younger than recipients at adult hospitals, which may have contributed to retention at a pediatric care center," they speculate, but add that: "Ultimately, the data in this paper may not account for the combined patient (or hospital) factors that compel the care team to retain the patient at a pediatric institution."
Further, "there are only a small number of pediatric hospitals transplanting adults with congenital heart disease. Out of 1006 patients transplanted in this study, only 110 were transplanted at pediatric institutions."
The finding in this paper of better post-transplant survival at highest-volume regional centers is "evidence that regionalized care of these complex adult patients may be associated with improved heart transplantation outcomes," they conclude.
"Expertise in congenital heart anatomy and management appears to be important for the care of patients with complex congenital disease who are now adults and have advanced heart failure," they write. "This paper adds to the growing body of evidence that care for all patients with congenital heart disease (children and adults) should be regionalized."
"Obviously, if you're an adult heart transplant program, you can transplant adults with congenital heart disease based on your experience with acquired heart disease, but what this article points out is that it's important that you do it more frequently than not, and also that you have specialized expertise being an ACHA-accredited center," Backer told theheart.org | Medscape Cardiology in an interview.
No heart transplantation is simple, but in the CHD patient, the list of potential complications is long, he said.
"I think some of the thinking might be that we just need to get whatever's there out and then put a new one in, but it may not be as simple as that if the anatomy is complex.… Sometimes transplant surgeons who do not have much experience in congenital patients get themselves into trouble because they just don't realize what they're getting into," he added.
Besides the increased surgical risk associated with operating on patients who may have undergone many previous operations, CHD patients often require aorta and pulmonary artery reconstructions and present with complex or unusual cardiac anatomy, the most extreme example being situs inversus.
"Some of these cases require a pretty complicated game plan to make it work," said Backer.
At the recent American Heart Association's Scientific Sessions 2019, Backer discussed the larger issue of procedural volume in pediatric congenital heart disease surgery, concluding that the United States has almost twice as many programs as it needs, and again calling for more regionalization of care.
Backer suggested that the goals of "rational" regionalization should be to keep case volumes at a minimum of at least 300 per year, to have at least one program per state that has more than 2 million residents (though keeping Hawaii's center), and to minimize travel distance.
"Regionalization of expertise is absolutely needed in this field," agreed JACC Editor-in-Chief Valentin Fuster, MD, Mount Sinai Hospital, New York City, in his weekly podcast.
Backer is a consultant to W.L. Gore & Associates. The remaining authors have disclosed no relevant financial relationships.
Medscape Medical News © 2019
Cite this: Debra L. Beck. Better Transplant Outcomes in High-Volume Adult CHD Centers - Medscape - Dec 05, 2019.