Before the 1940s, the prognosis for babies born with complex congenital heart disease was dismal. Less than 10% of these children survived to adulthood. However, since then, major breakthroughs in the detection and treatment of congenital conditions have greatly improved their outlook. This century alone has garnered incredible advancements that have changed the life trajectory for congenital heart disease patients. Currently, more than 90% of babies born—even those who have the most severe heart defects—are expected to survive into adulthood. In this commentary, Wayne J Franklin and Daniel A Velez review how using a heart team approach can further benefit children with congenital heart disease.
The greatly improved survival rate for patients with congenital heart disease is fantastic news for them and their families; it is also a powerful testament to the potential of modern medicine, but there is more work to be done. How do we continue to make gains in patient care and outcomes for children and adults living with heart defects? One solution is to take a “heart team” approach to patient care from foetal life through adulthood.
The heart team approach
In the US’s top congenital heart disease programmes, multiple clinicians work together to care for patients from the moment of diagnosis—often in utero—through adulthood. Since patients’ needs shift dramatically over the course of their lives, this collaborative approach is important.
At Phoenix Children’s Heart Center (USA), we have found that a heart team model is best for our patients. Cardiologists with expertise in foetal, paediatric and adult congenital heart disease, along with specialists from the cardiac surgery and cardiovascular intensive care unit teams, come together for each patient case.
Most of our cases begin when expectant parents learn there is a problem with their baby’s heart. From there, our team consults with the family on the diagnosis and short- and long-term outlook, and they collaborate on a plan for the birth and after-birth care. This is important because no two patients, and no two care plans, are ever the same and our doctors offer unique and individualised care to each patient and their family. While congenital heart disease is the most common birth defect, there are many different types of defects. Our heart team, with expertise in every facet of cardiac care, can treat all types of conditions, from routine issues to life-threatening disease.
Beyond the aspects of planning care, the team model gives patient families a long-term perspective on their child’s health and a glimpse at life beyond the immediate shock of a diagnosis. It also means that heart patients grow up with their clinicians; an advantage over other types of care that some patients receive.
The model at work
An example of our team approach is our inter-stage cardiac surgical monitoring programme—the cardiac high acuity monitoring program for infants and newborns (CHAMPION)—for infants who have severe congenital heart disease and single ventricle physiology.
CHAMPION patients require multiple complex surgeries to treat their condition, often before their third birthdays. This may include open heart surgery, the use of mechanical assist devices, cardiac catheterisation, or other interventional treatments.
After they “graduate” the CHAMPION programme and throughout childhood, patient families work with the same care team. When children reach adolescence, we begin a long-term, phased plan for the eventual transition to adult care. This plan includes milestone dates, such as turning 16 [the legal age for learning to drive in the USA] or turning 18 and being old enough to sign their own consent forms—and encourages their participation in their own healthcare.
For patients with the most complex cases, we continue to provide high-quality heart care through our adult congenital heart disease programme. This is an important safeguard as very few adult [patient] cardiologists possess the expertise to treat adult patients with congenital cardiac disease.
More than clinical care
Clinical collaboration is just one part of our team approach. Collaboration, an empowered team, open communication with patient families, and a true understanding of the ups and downs of raising a child with a chronic condition are our highest priority as we care for our patients.
How do we accomplish this? First, we are dedicated to involving our families in every aspect of care planning. With our team approach, much of this happens naturally. Additionally, given our diverse patient base, this means providing care in a family’s native language whenever possible. Many of our providers speak Spanish [the second most common language in the USA], a benefit that enables our families to feel more connected as they participate in their child’s care.
Second, we are passionate in our commitment to accountability and transparency within our team. Every single one of us, from schedulers and administrators to nurse practitioners and doctors, is an important part of the care team. There is no such thing as “the doctor knows best” and no catering to egos. This team-based, collaborative approach, simple as it may seem, has made a huge difference for many patients and families over the years.
Learning from our mistakes
The basis for our success—in national rankings and the growth of our heart centre—is our team approach. Even so, we are keenly aware that patient outcomes can change in an instant. Every patient matters. Even with the best teams, perfection is not always possible. This is a truly important, yet often challenging, lesson to learn in medicine.
We do not shy away or pretend mistakes do not happen. On the contrary, we thoroughly evaluate adverse outcomes, working together as a heart centre to determine where we may need to modify our approach, address future challenges, and ensure we are giving our absolute best to every patient.
We also voluntarily report our surgery data on our congenital heart disease patients to the Society of Thoracic Surgeons (STS) Congenital Heart Surgery Database, which provides detailed heart surgery outcomes reports and compares our performance to other programs throughout the USA and Canada. This method drives us to provide our very best to each and every patient.
While we celebrate the medical breakthroughs that have given patients a chance at a normal life, we continue to evaluate, innovate and educate. At Phoenix Children’s Hospital, we believe that a heart team approach—with clinicians who offer expertise for every phase of life—is an absolute necessity. We are proud to serve families from the moment of diagnosis through their entire lifespan.
Wayne J Franklin and Daniel A Velez are Co-Directors of the Phoenix Children’s Heart Center, Phoenix, Arizona, USA
