Here's how children's hospitals can support long-term outcomes for pediatric patients with chronic medical issues and help them thrive into adulthood.
By Robert W. Elder, M.D., and Lynne Sherman, M.H.A., B.S.N., RN, NEA-BC
This is a tale of two Michaels born 25 years apart, both with complex congenital heart disease (CHD). Each had a different experience transitioning care from pediatric specialists to adult management. A team of specialists should have transitioned them to adult providers familiar with their congenital issues, but only one experienced the support of a comprehensive team during that transition.
Michael A., (now 50 years old) was born with tetralogy of Fallot, the most common form of cyanotic CHD. In the era of his birth, survival with complex CHD wasn't guaranteed. Yet, he underwent a series of surgeries and did well. The focus was on short- to medium-term outcomes and not necessarily on the long-term. As he got older, providers never recommended he should transition to an adult provider, and so he moved on with his life, his family, and his career without receiving support services.
In his 40s, he began to develop complications related to his initial surgical repairs and underlying CHD. These were known entities and though most likely not preventable, they could have been anticipated and in some cases mitigated. Yet for Michael A., these issues were not expected because providers never informed him about care transition opportunities, creating a lapse in his care.
Compare this to Michael L., (now 20 years old), who was born with a complex CHD. At an early age, his pediatric providers frequently discussed with him and his family that he would require care for the rest of his life, and he would benefit from the care of someone with expertise in CHD. When he started to approach college age and planned to set out on his own, his pediatric cardiologist collaborated with him and his parents to transition to an adult congenital heart program, where teams help him manage his health today.
The success of increased longevity for populations with complex medical needs has caused some confusion over what is the traditional age range of pediatrics. Hospitals must collaborate and coordinate an appropriate care plan for these at-risk groups. To achieve this, providers must move beyond a vision and develop a strategy to support long-term outcomes for pediatric patients with chronic medical issues. In doing so, a seamless transition of care emerges that is essential to supporting individuals over a lifetime.
Positioned for care
Children's hospitals within adult hospitals and health systems have an opportunity to provide care transitions of pediatric patients with complex medical conditions across the age spectrum. These types of hospitals have:
- Clinicians in adult and pediatric specialties
- Services located within common settings and familiar environments for patients. This decreases anxiety and facilitates compliance
- Established and trusting relationships with existing providers to facilitate handoffs to the next team of adult caregivers
- Face-to-face unified care planning and coordination with teams
To provide effective transitions, the patient and family must be the focus of all efforts. Establish seamless processes for accessing providers and ancillary support staff. Based on evidence-based clinical care, comprehensive plans should include advanced treatment options, such as diagnostics, procedures, treatment regimens or surgery. Mobilize these services into the community and regionally whenever possible. An organization could also bring services closer to the patient's home, as well as collaborate and support continued care with community physicians.
Moving into adulthood
For years, the number of adults living with CHD outnumbered the number of pediatric patients with CHD, thanks in part to advances in care. Today, there are more than 1.4 million adults in the U.S. living with CHD. As this group of adult patients becomes more complex, Yale New Haven Children's Hospital (YNHCH) partnered with Yale New Haven Hospital and the Yale University School of Medicine to create a program dedicated to their care. Now, more than a decade later, that program continues to grow and provide care to patients like both Michaels.
The Yale Adult Congenital Heart Program brings together pediatric-oriented expertise to understand the congenital issues and surgical history, and adult-oriented expertise to understand comorbidities and complications. Using resources on both sides, the group provides complex clinical care, imaging services, testing and interventions, minimally invasive catheter-based techniques and open surgical approaches. The service also aims to be a medical home for adults with CHD to provide appropriate care whenever they need it.
One of the most important issues for this group of patients is continuity of care without significant lapses in medical follow-up. This is essential to mitigate complications, prevent new problems, and avoid unnecessary testing or dangerous services that do not take into account the physiology of some of patients. One of the most vulnerable times for pediatric patients with complex disease to have a lapse in care is late adolescence or early adulthood—exactly the time when many young adults have their focus on other things such as college, careers and families.
In a recent study by Michelle Gurvitz and colleagues published in Journal of the American College of Cardiology, 42 percent of patients with moderately complex heart disease and 26 percent of those with complex heart disease had a gap in care of more than three years. Most of this happened when they were around 19 years old.
Successful transition for children with CHD should be a process rather than a moment. At YNHCH, the process begins as early as age 12 with education about the name of the patient's condition, names and doses of medications, and reinforcing the concept of lifelong care. This education is focused on the patient but includes the family and other caregivers, too. However, involving family members at this stage is a fine balance—limiting their involvement ensures the patient, whenever feasible, is ready to assume some of his or her own care and decision-making.
Taking advantage of the fact that YNHCH is a hospital within a hospital, the organization provides one of its experts in adult congenital heart disease to meet pediatric patients in their pediatric environment prior to transition. This is the first of many opportunities for a focused discussion on adult-oriented issues. To ensure full communication of complex medical histories and issues, the congenital heart program uses a single electronic medical record.
Moving into the future
In the story of two Michaels, one had a planned transition process from pediatrics to adult-based care, and the other did not benefit from such a transition. Thankfully, both patients have survived and are now in appropriate care and doing well, however, both had different experiences. Not all patients with complex medical conditions have had the opportunity for an expert multi-disciplinary team to support them through adulthood.
In addition to patients with CHD, the issue of transitioning care for complex pediatric patients has broad applications. For example, more patients with cystic fibrosis are taking advantage of novel treatments and respiratory care and arriving at adult clinics. Survival rates from a childhood cancer diagnosis are over 80 percent, yet those individuals may suffer from long-term complications related to the radiation and chemotherapy they received as children.
Children with neuromuscular disorders have benefited from advanced medical therapies and require adult providers familiar with their conditions. Most of these patients require transition across the continuum of care (inpatient to outpatient to home) and continuum of ages (in utero to pediatric to adult). And finally, in many cases when the adult medically complex patient becomes pregnant, she subsequently relies on specialists in obstetrics and maternal fetal medicine to support her and the new child, bringing the cycle of transition full circle.
Children's hospitals' core values include the obligation to improve care and outcomes. By helping facilitate adult specialty services for patients who need it, hospitals can help fulfill this mission. Strategies that support best practices for transition care include:
- Developing values for the program focused on delivering family-centered care.
- Spending time up front to connect and collaborate with core members of the care team.
- Reviewing existing programs and adapt or rework them to meet the needs of the new program.
- Bringing all resources together on behalf of the patient (social services, information technology and locations).
- Engaging stakeholders through feedback forums, such as solicitation of ideas and sharing outcomes.
- Being transparent with transition challenges and engaging providers, care teams, patients and families in the solutions.
- Including others outside the organization, like community physicians, to foster the transitions.
- Ensuring appropriate communications and handoffs.
The health care needs of pediatric patients with medical complexity cycles continuously. Focused services, transition, and collaboration with adult specialists are essential to improving the health care experience and outcomes for all patients.
Robert Elder, M.D., is assistant professor of Pediatrics (Cardiology) and Internal Medicine (Cardiology) at Yale University School of Medicine. Lynne Sherman, M.H.A., B.S.N., RN, NEA-BC, is director, Pediatric Specialty Centers, at Yale New Haven Children's Hospital. Send questions or comments to firstname.lastname@example.org.