The Anschutz Medical Campus could soon be home to one of the few nationally accredited programs for the treatment of adult congenital heart disease. The Adult Congenital Heart Association made the announcement July 20.

The CATCH (Colorado’s Adult & Teen Congenital Heart) program combines the expertise of multiple providers at campus neighbors University of Colorado Hospital and Children’s Hospital Colorado. The two hospitals share board-certified faculty from the University of Colorado School of Medicine who practice in both settings and continue to work together to smooth the often difficult transition for patients with a host of congenital heart defects from the pediatric to the adult environment.
The program was one of only five pilot sites chosen by the ACHA to apply for accreditation. All five are working toward completing the accreditation process, ACHA said in its announcement. A final decision is expected in December, according to Angela Murray, ACHA’s director of communications.
Congenital heart disease is the most common birth defect and spans a host of abnormalities, among them problems in the ventricular and atrial walls; transpositions of the arteries; and a quartet of defects called Tetralogy of Fallot. The CATCH accreditation is important for establishing standards of care for these patients, an increasing number of whom are surviving into adulthood and are in need of centers that provide multidisciplinary care, said Joseph Kay, MD, director of the Adult Congenital Heart Disease program at UCH.

“As a community, we have realized there is so much heterogeneity in the care patients receive,” he said. “The accreditation is a step forward in setting the bar so that everybody gets the minimum requirements of care.” The effort is not aimed at making all congenital heart disease programs alike, he added, but rather to encourage more hospitals to develop strategic approaches to treating patients and managing their needs throughout their lives.

University of Colorado Hospital and Children’s Hospital Colorado continue to work together to ease the transition of congenital heart disease patients from pediatric to adult care.
Curt Daniels, MD, FACC, chair of ACHA’s Medical Advisory Board, noted the importance to patients of having access to accredited programs. In a statement, he called the ACHA program a “critical landmark” that will provide adult congenital heart disease patients “a means to find a high quality program throughout the U.S.”

Lorna Prutzman, RN, MSN, executive director of Cardiac & Vascular Services at UCH, said surveyors focused during a recent one-day accreditation site visit on the CATCH program’s structure and on the clarity of the roles and responsibilities assigned to providers. The point isn’t simply to have all the pieces but to figure out how they fit together for patients.

“The ACHA wants to begin creating networks of care,” Prutzman said. That applies not only to patients within a system, like the CATCH program, but to those who live in distant communities who might need specialized care.

“We will need to work with community providers and build relationships with them,” Prutzman said. “We think a lot of these patients get lost to follow-up and we want to let them and their providers know there is a permanent home if they need it.”

Diversity of defects

The differences in the standards of care for patients with congenital heart defects can at least partially be explained by the breadth of services they may need. They include pediatric and adult cardiac surgery, organ transplant, interventional cardiology, electrophysiology, cardiothoracic surgery, echocardiography, heart failure expertise, advanced care nursing, and reproductive services. Even hospitals like UCH and Children’s Colorado that have all that covered have to develop policies to integrate the delivery of those services, Prutzman said.

Dunbar Ivy, MD, chairman of Pediatric Cardiology at Children’s Colorado, says the number of patients with congenital heart defects who survive to adulthood has been steadily increasing.
It’s also vital to have social workers and psychologists to help young patients transition to adult care, Kay said. He noted, for example, that congenital heart disease patients suffer depression at rates two to three times those of their peers. The common challenge for all young people of learning to live independently is compounded for patients who have needed help all their lives to manage complex diseases.

“It’s a big shift. They have to drive their own care and learn to take care of themselves,” said Dunbar Ivy, MD, chair of Pediatric Cardiology at Children’s Colorado. “It’s often more difficult for these patients because many of them have relied on their parents heavily to drive their care.”

Both Kay and Ivy conceded that bridge-building between the hospitals has been a longstanding work in progress. Ivy noted that the field has changed dramatically since he began caring for congenital heart defect patients in the early 1990s. At that time, the focus for pediatric providers was on simply helping them to survive. By the 2000s, he said, survivors began reaching adulthood in greater numbers, triggering the need for more adult specialists. That has been a gradual process, and institutional changes to accommodate the growing numbers of patients have at times been slow.

Bridge building

Progress has been made, notably with the addition of a transitions-of-care coordinator based at Children’s Colorado, Kay said. The CATCH program has three board-certified physicians – Kay, Amber Khanna, and Elizabeth Yeung – who work in both the adult and pediatric settings. It will soon add a fourth in Gareth Morgan, MD, and started training its fourth fellow in adult congenital heart disease this month. Like Ivy, Peter Buttrick, MD, head of the Division of Cardiology at UCH, has provided leadership support.

Ivy noted that the Colorado Institute for Maternal and Fetal Health (CIMFH), a joint venture between UCH, Children’s Colorado and the CU School of Medicine, has also played an integral role in helping to educate parents early on about the challenges they and their children can expect after early surgeries to address abnormalities.

“Early interventions have been important not only for survival but also to ease parents’ fears,” he said. “In the 90s, congenital heart defects were almost always a surprise. Now when we know that an infant has a serious lesion, we can deliver at [CIMFH], repair the defect and also help to reduce parents’ anxiety about the condition.”

Accreditation for the CATCH program would be only a first step in a long process of improving care for patients who not long ago faced a bleak future, Kay said. He cited adding a psychologist at UCH as a counterpart to the one already in place at Children’s Colorado as a top priority. He and Ivy agree that expanding patient outreach beyond the Front Range is also a must, he said.

“We need more providers to go to western Colorado, Wyoming, and Montana and break down the barriers to care,” Kay said. “We don’t want to take over the care of these patients, but supplement it.”

Prutzman envisions a time when insurers look to CATCH and other accredited programs as centers of excellence for managing the care of congenital heart defect patients. Patients who live outside the Denver area might get their basic care in their communities but come back to UCH or Children’s Colorado for a yearly “head-to-toe” exam to catch potential problems, she said. Telehealth services might also play an important role in tracking patients.

“It’s a piece of population health management,” Prutzman said. “We have to look at cohorting these patients.”

“Building a continuum of care is crucial,” Ivy agreed. The prospect of accreditation, he added, “points to the excellent efforts that have been made to make that happen.”