Patients for Life: Preparing for the Adult CHD Surge

Are enough resources available to treat the growing population of adults with congenital heart disease?   

More than 90 percent of children born with congenital heart disease now survive to adulthood, with many achieving normal life expectancy (Am J Cardiol 2016;118(4);590-6; J Am Heart Assoc 2016;5(1):e002330). As a result, adult congenital heart disease (ACHD) patients now outnumber the pediatric CHD population, leaving some experts concerned that the U.S. healthcare system is not prepared to care for the surge of adult patients.

“Recent research indicates that two million adults now have CHD,” says Ali N. Zaidi, MD, an ACHD specialist with the Albert Einstein College of Medicine in New York City. “That number is sobering and staggering, and it’s only going to increase. So, the largest challenge we now face is a shortage of subspecialists trained in treating adult patients.”

Technology has been able to support the strides that improve pediatric patient survival, but solutions to the clinician shortage will require a different approach.

ACHD specialists needed

In 2008, an American College of Cardiology/American Heart Association task force released the first of its ACHD guidelines. The task force recommended that treatment for adults with moderate or complex CHD be guided by, or delivered in collaboration with, clinicians trained in treating adults with CHD (Circulation 2008;118:e714–e833).

Appropriate to that guideline, in 2012, the American Board of Medical Specialties (ABMS) approved the creation of physician certification for the ACHD subspecialty. Three years later, the ABMS administered its first exam board, and the Adult Congenital Heart Association began a drive for accreditation of ACHD treatment centers. That same year, the Accreditation Council for Graduate Medical Education began accrediting training programs for the emerging subspecialty.

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Zaidi believes that such accreditation processes should help increase the number of physicians specifically trained to treat the growing population of ACHD patients. With only 150 ACHD-Board-certified physicians and, as of 2015, 114 self-designated ACHD centers, there is a long way to go to address the “significant discrepancy between the volume of patients who need care and [the] number of providers,” he says.

The reason for dedicated subspecialists and centers was evident. “[Compared with their pediatric counterparts], ACHD patients have a whole separate set of physical and psychology challenges, including a very specific set of complications and complex needs they face later in life,” says Disty Pearson, PA-C, a physician assistant (PA) specializing in ACHD at Boston Children’s Hospital.

ACHD patients may have simultaneous heart conditions, such as congestive heart failure, arrhythmia and vascular and arterial disease. They are prone to co-morbidities such as hypertension, diabetes, obesity, kidney disease and peripheral arterial disease (J Am Heart Assoc 2016;5[1]:e002330). Also, pediatric patients can develop neurodevelopment issues, such as cerebral palsy, autism and ADHD, that manifest as they grow. And many ACHD patients require multiple surgeries and interventional procedures over their lifetimes.

“That’s why board certification was created,” explains Zaidi. “Because patient treatment is so complex, a cardiologist wouldn’t be able to provide all of the appropriate care for this cohort. You need physicians with dedicated ACHD training. This is the only way to do it to achieve the most desired outcomes for these very specific patients. Still, we don’t have enough physicians being trained.”

Training demands

Within the shortage challenge is a dilemma about the amount of training required to specialize in ACHD. Aspiring ACHD physicians travel a long road. On top of the years they spend training to become cardiologists, they “then have to do two extra years of subspecialty fellowship training followed by another board exam,” says Zaidi. “In all, it will take you five to eight years beyond medical school to become an ACHD subspecialist.”

“You can’t cut make the training shorter, because that’s the kind of training that we need to best deal with ACHD,” says Zaidi. “Also, that kind of training is the national paradigm for other specialty training.”

Robert Campbell, MD, a pediatric cardiologist at Children’s Healthcare of Atlanta, agrees that an additional burden is placed on ACHD specialists, involving time and expense. “But we have to go out of our way to ensure we are properly training the new generation of cardiology physicians,” he adds. “The only thing we can do about this is to find the physicians who are passionate about ACHD.”

Today there are only about 12 ACHD subspecialty training programs in the U.S., according to Zaidi. “That circles back to the shortage,” he says. “If you only have a dozen available programs, you’re only training 10 to 12 cardiologists a year.” As such, ACHD advanced practice providers (APPs) are ameliorating some of the consequences of the physician shortage.

“The training for physician assistants and nurse practitioners is much less lengthy, so their role becomes very important in treating these patients as part of a team,” says Pearson.

Team has become a key word. “The PA and nurse practitioner are part of a necessarily big team,” Campbell says. “Other specialists—such as pulmonologists and nephrologists—need to be a part of what is essentially a collaborative effort. They’re all working with a very complex patient population, one that is not easily managed.”

Financial challenges

As the number of people with ACHD grows, caring for them is requiring an increasing volume of resources. A 2015 analysis of resource use by ACHD patients admitted to an adult hospital indicated that their care accounted for 32 percent of costs but only 10 percent of admissions (Congenit Heart Dis 2015;10[1]:13-20).

Noting that few studies have focused on ACHD healthcare use in relation to “social, demographic and health characteristics,” Zaidi and colleagues mined National Inpatient Sample data from 2002 to 2012. They found that hospital billing for ACHD patients climbed 155 percent over the decade while total healthcare expenditures increased 113 percent. Looking across discharge, length of stay, billing and reimbursement, they found increased healthcare use by ACHD patients, despite a lack of precise ACHD billing codes (see figure on page 33). The unavailability of ACHD-specific billing options itself calls into question the health system’s readiness to care for an “aging population [that] is more ill and requires more specialized care,” they wrote (Am J Cardiol 2016;118[4];590-6).

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Clinicians are feeling the effects of the surge in ACHD admissions in the time they spend seeking prior authorizations. It has become hard to convince insurers to allow ACHD patients to go to specialized centers, “where they can get the appropriate investigation and treatment,” Pearson says. “The high costs associated with such high resource utilization and the impact on reimbursement have made insurers reluctant to recognize the value of ACHD care.” She estimates spending about an hour a day “explaining why these patients need specialized care.”

For Campbell, the combination of heavy resource use and uncertainty about reimbursement suggests two questions: Will ACHD patients be insurable in the future, and how will hospital systems absorb the cost of their care?

“This could be very expensive as far as diagnostics and treatment options,” he explains. “The patients may not be insured at all. So, a hospital could turn out to have a handful of these patients, which will run into millions of dollars to treat them, with no reimbursement.

“No one wants to decrease costs by providing care to this patient population that is just good enough or less than good enough,” he adds. “It could come down to hospitals and health systems better managing those costs.”