From Childhood to Adulthood: Helping Patients Make Their Way

Thanks to medical advances, babies born with Down syndrome, sickle cell, cystic fibrosis and other childhood-onset conditions are going farther and doing more with their lives than ever before: school, careers, even starting families of their own.

But to reach their full potential, these young adults will need right-sized health care and ongoing support to manage lifelong medical challenges. That kind of care isn’t widely available yet. UR Medicine’s Division of Transitional Care Medicine is one of the first in the nation to offer it.

Its efforts are just beginning, but already yielding important gains: its patients are seeing significant reduction in health complications that require emergency room visits and preventable hospital stays.

Tiffany Pulcino, MD, MPH, is UR Medicine’s chief of the division of Transitional Medicine and founder of the Complex Care Center, a primary care practice designed for adult patients living with chronic childhood health issues. She and her colleagues have been working to build a way forward for patients as they age out of pediatrics.

“It is a natural process for children to grow into adulthood, so the shift from pediatric to adult medical care should be a smooth transition,” she said. “But for patients with lifelong, complex conditions, too often it can feel like stepping off a cliff and into the unknown.”

From Childhood, to Adulthood: An Often-Rocky Passage

In most cases, patients “graduate” from pediatrics to adult care when they are 19. That shift can be difficult even when patients are generally healthy: Young adults living on their own, with no primary care physician and no experience in self-care, may not know what to do when they get sick. So they often delay seeking treatment and develop acute medical problems.

“That’s why healthy young adults aged 18 to 24 are the second-highest users of emergency departments in this country – right after people who are 75 and older,” Pulcino said. 

The situation is even tougher for patients with chronic, childhood-onset conditions (see sidebar). Their health requires careful management, but most patients in their teens haven’t yet built those skills because their parents have supported their needs from birth. Their medical conditions might cause physical impairment and difficulty communicating, and make it difficult to live independently or find steady employment. Patients may have trouble accessing reliable transportation to health appointments, and the numerous specialists they need to see may be scattered all over town. 

And perhaps the biggest challenge of all:  Traditional primary care practices aren’t designed to offer the kind of care and support they need. Many young people with complex conditions end up staying with their pediatric practice longer than usual because they have no place to go. But the growing numbers of patients heading toward adulthood means new solutions are essential. 

Building a Path Forward

Over the past decade, Pulcino has led UR Medicine’s efforts to create medical systems that meet their unique needs, including:

The Complex Care Center for comprehensive outpatient care. The center opened in 2015 to integrate primary care with many other clinical services under one roof and provide team-based care management to help patients stay as healthy as possible.

It was built with patients’ physical and emotional needs in mind. Large sliding-glass entry doors, wide hallways, and oversized patient rooms accommodate patients on foot, in wheelchairs, or using assistive equipment. A quiet room off the main waiting area is a calming alternative for patients with sensory issues. Integrated dental care provided by the Eastman Institute for Oral Health incorporates a critical but often overlooked component of patients’ overall health. Behavioral health, physical therapy, occupational therapy – these and other frequently needed specialty services are integrated with primary care so patients have many needs handled in one visit. An on-site lab saves patients time and a separate trip when providers order tests.

The center takes a proactive approach to patient wellness; every Monday morning, the full team meets to discuss new patients and those currently hospitalized, as well as learn about new treatment options to improve care. Before every clinic session, the team reviews who is coming in for visits to anticipate their needs, and every two weeks, they make plans for patients approaching new challenges such as an organ transplant or life transition.

Access to the right care, and a caring team of people who help patients navigate health challenges, has yielded big dividends. The center’s approach has helped patients  avoid preventable, stressful health emergencies. Since the center opened, it has achieved a 38 percent drop in ED visits for this patient population and a – drop in hospital readmissions.

A formal policy to help patients navigate the shift from pediatric to adult care.

UR Medicine is the first health system in the country to create a Transitional Care Medicine division dedicated to helping young patients successfully move from pediatric to adult health care. Transitional Care Medicine aims to help all pediatric patients move smoothly into adulthood. For patients with complex needs, a good transition plan includes both outpatient and inpatient hospital settings, and is years in the making.

Francis Coyne, MD, is a physician with the Complex Care Center who focuses on planning patients’ transition from Golisano Children’s Hospital to the adult settings of Highland and Strong Memorial hospitals.

The prospect of shifting from pediatric to adult worlds is emotionally and physically challenging for patients.

“We’ve seen, for example, that patients with Type 1 diabetes have worse blood sugar control around the time of transition. Sickle cell patients can have flare-ups in their condition as well,” Coyne said. 

“There are a lot of Golisano Children’s Hospital patients in adolescence who need regular hospital care, and they see the move to an adult hospital as a very scary thing,” he said. “So when patients are about age 12, we start introducing this idea of transitioning to adult care to give them and their parents time to process this change.”

For outpatient care, pediatric providers also begin talking with patients in early adolescence. Patients with complex needs, who will qualify for the level of care the Complex Care Center provides, get an in-person consultation with Coyne or one of his colleagues at about age 16 at Golisano Children’s Hospital to help them and their families plan for the future. The center collaborates with the child’s primary care pediatric and specialty providers on the path forward.

Prior to age 19, when patients will begin going to Highland or Strong Memorial for their hospital care, they get a tour of the adult facilities and meet care teams there. And during patients’ first adult hospital admission, both pediatrics and adult providers follow the patient to ensure a comfortable handoff.

Transition planning involves good communication between outpatient and inpatient providers. Health care providers in EDs and adult hospital units may be unfamiliar with patients’ special needs and challenges. To give them quick insight, the Complex Care Center creates a care plan document that lives in patient electronic charts. It includes:

• Recommended treatments and medications, as well as precautions on what not to do
• An overview of the patient’s outpatient regimen, including pain management, and special considerations such as sensory issues or communication challenges the patient may have
• Instructions for caring for the patient in an ED setting

The information helps providers make the best choices for patients when time is critical. And it gives patients a voice in their hospital care, since Complex Care Center providers work with them to document their needs in the outpatient setting, before they need hospital care.

“It’s a way for patients to own their care and helps manage their anxiety,” Pulcino said. “For autistic patients it’s reassuring that people caring for them in an emergency know their sensory issues.  For sickle cell and cystic fibrosis patients, who need frequent hospitalizations and may see a different care team each time, it has been very helpful. Emergency room providers love it because they don’t have to look through a medical chart that might have 30 years of medical history.” 

“When we have a plan in place to help patients move from pediatric to adult care, we see their comfort with the transition improve. And we see their overall health and safety improve,” Coyne said.

A goodbye celebration.

For patients who have had frequent stays at Golisano Children’s Hospital throughout their childhood, moving to an adult hospital isn’t just scary; it can be sad to leave people they’ve come to know and trust. To help them with the change, Golisano Children’s Hospital gives them a formal graduation ceremony hosted by staff. Patients don a paper graduation cap handmade by a Child Life team member. Cake, balloons, and music make it a celebration, and a congratulatory poster signed by staff is a keepsake. Graduation is a bittersweet moment for patients, parents, and staff. But it helps patients recognize and celebrate their new status as adults, and eases their anxiety about future hospital visits in a new place.

The Road Ahead

Pulcino and her colleagues have made great progress in just a few years. Here’s what ahead for the Complex Care Center and Transitional Medicine:

Expanding its ability to care. Like its patients, the Complex Care Center needs space and support to grow. It provides care to approximately 3000 adults and is still open to new patients. But within the next year it expects to reach the capacity it can manage and still provide the level of care patients need. To address this, the team has added additional primary care providers to respond to the large demand for care, but needs more physical space to be able to see more patients and expand its roster of services.

“We could do so much more clinically if we had more space,” Dr. Pulcino said. “We could help patients by offering daytime hospital care and additional specialty services, in addition to expanding access to our current services, and being able to train the next generation of clinicians.”

Developing a more comprehensive transition plan for all pediatric patients.

Every pediatric patient – including those without chronic conditions – can  benefit from a solid roadmap from childhood to adult care, so Transitional Care Medicine is working on a consistent policy that pediatric providers, adult outpatient practices, and hospitals can use to standardize care planning.

Exploring the best ways to care for adult patients with complex needs, and sharing those discoveries. “This is a new area for health care,” Pulcino said. “It’s only been in the last five years in our region that the number of adult patients with childhood illnesses outnumbers children. We don’t have well-established plans for medications and treatments for adults. And in the decades ahead, we will be caring for patients who are living longer than ever before with these conditions. Like health care providers around the country, we are gathering knowledge, and will publish research on our findings so that we can advance our understanding of how these diseases progress in adulthood. In a sense we’re in unchartered territory, and we need to build the road as we go.”

“Our goal is to ensure that all our patients live their best life possible. We want to make Rochester a model for community and health system collaboration to close the gaps in care, and help children find a fulfilling and healthy path from childhood to adulthood.”