By Darby Kendall
As medicine has evolved and advanced, health care providers today are better equipped to treat chronic medical conditions in children, allowing more pediatric patients to age into adulthood. With this extraordinary progress of extending the lives of so many, there’s also a more complex patient population that now needs extra assistance managing their diseases independently as adults.
Enter PATH.
The Pediatric to Adult Transitions in Health Care (PATH) Program at OHSU Doernbecher Children’s Hospital supports pediatric patients and families in the move from Doernbecher providers to adult providers and prepares patients to take charge of their own care as they enter adulthood. Mortuma Murry, D.N.P., CPNP-AC/PC, assistant professor of pediatrics at the OHSU School of Medicine, is the provider lead of the PATH program.
“Because adult medicine doesn’t support patients the same way that pediatric medicine does, health care transition should be a core component of somebody’s care from the start,” Murry said. “This program creates the infrastructure at academic health centers to support young adults to reach a place where they can have that autonomy and independence, to truly live their lives to the fullest, to understand their disease and the complications of their medical care and be able to navigate it. If we force patients to be independent via a move into adult care, we see them struggle a lot because there’s no preparation. We can avoid that struggling, and it’s preventable if we create the infrastructure and provide them the right support and the right mechanisms to prepare and succeed, and that’s what the PATH program is meant to do.”
Transition to adult care takes place over several years — ideally, planning and introductory conversations start around age 11 or 12. Patients often move to adult providers between the ages of 18 and 25 in most practices, sometimes in the midst of receiving lifesaving treatment, which the PATH program will then help them navigate.
“With PATH, one of the biggest considerations is that a lot of the people dealing with difficult diseases are children who will become young adults, and we need to help coordinate and plan for whether the pediatric team or the adult team provides their care,” Murry said. “What happens if the patient is in transition between the two teams but they’re midway through a treatment, or already have some of the groundwork laid for the treatment to happen on the pediatric side? How do we ensure that we have continuity of care when they move to a different doctor and a different care model? These are the kinds of clinical challenges that the PATH program provides expertise in managing.”
Producing a pilot
As a medical provider, Murry specializes in hematology oncology, primarily in hemoglobin disorders like sickle cell disease, which greatly plays into his work with PATH. “For kids with chronic blood disorders, their conditions are often very complex, and they’re fully dependent on their family, caregivers and the health care system. They’re one of the primary populations where this transition to adulthood is very difficult,” Murry said. “This made hematology — amongst similar specialties — a good fit for piloting the program on a small population of patients.”
The pilot for the PATH program began with a community assessment, reaching out across OHSU and asking providers what they felt would be the most valuable way PATH could engage in health care transition work with their patients.
“Almost unanimously, clinics said in one way or another, we need a program where there’s a team of experts who know health care transition inside out and can deliver this layer of care to our patients because we don’t have the capacity, the training or the bandwidth,” Murry said. “The PATH team then came to the drawing board and brainstormed what we could do to meet these needs and show impact.”
The team created a process that starts with a patient conversation reviewing the skills they are expected to master by the time their team transfers them to an adult provider. Such skills include knowing their disease, their health care team, how to use the health care system, treatment compliance, getting labs done, and slowly taking the lead on their visits until they can attend visits independently.
“If we force patients to be independent via a move into adult care, we see them struggle a lot because there’s no preparation. We can avoid that struggling, and it’s preventable if we create the infrastructure and provide them the right support and the right mechanisms to prepare and succeed, and that’s what the PATH program is meant to do.”
Annually, a readiness assessment is given to gauge the patient’s disease knowledge and management skills. Education is then incorporated into the patient’s routine visits based on growth areas found in the assessment. This cycle of assessment, routine education and monitoring continues until the patient reaches an appropriate age for the transfer.
“Unfortunately, after only 10 months of offering the pilot, we were faced with difficult staffing situations due to lack of continued funding. We ultimately lost both primary roles that were the feet on the ground for the pilot — seeing patients in clinics, meeting with and consulting clinic staff on best practices for health care transition, giving tutorials on how to document and bill for these services, and more. We did ultimately finish a year of the pilot but had to pause further iterations until we have funding.”
Murry and his team are now conducting data analysis and writing up the findings from the pilot year. They found that clinics who received support from PATH did more of the recommended patient transition activities and shared the benefits of the program with other groups, who also reached out to the PATH team for transition support. They also found that most clinics lack the expertise, staffing and clinical time to provide transition care to their patients routinely, speaking to the greater need for a program and a team of expertise like PATH to exist.
Driven by lived experience
Transition care isn’t just best practice for Murry. It’s also personal.
After completing his doctoral thesis project at OHSU on health care transitions in 2021, Murry decided to professionally focus on blood disorders for both their overlap with medical transitions and his own lived experiences seeing the diseases’ impact.
“I grew up in West Africa for half my childhood, and one of the primary blood disorders that is very common in that country is sickle cell disease,” Murry said. “I grew up in a family where sickle disease was very common, and I have a sister with very severe sickle cell disease, and an uncle who passed away from it. I myself have sickle cell trait, which means I carry one of the two genes for the disease, so I really had a personal interest and passion in becoming an expert in that particular area.”
The field has had some recent, exciting updates when it comes to treatments for blood disorders, including two new gene therapies coming to OHSU. Murry explained that the new therapies eliminate the potential of graft versus host disease, a possible deadly side effect of classic treatments for sickle cell disease.
“There’s been bone marrow transplant for sickle cell disease for multiple decades, but there’s a new curative treatment for sickle cell disease that is a gene therapy. We’re able to cure patients by making modifications to their own cells and genetics, so there’s no donor involved,” Murry said. “We don’t have to give them donated stem cell products from somebody else. Now we can directly make changes to their own cellular products to cure them of the disease, which is a huge update.”
Sickle cell disease causes chronic pain that can be debilitating, and when patients age out of pediatric care without proper disease management, unfilled prescriptions and a lack of routine care can lead to a difficult life, sometimes snowballing into one with no medical support at all, homelessness and increased death rates. With the PATH program, early intervention can help provide a future of independence, employment and stable living for hematology patients who continue to receive disease-modifying therapies.
Invested in the future
Murry said he’s glad to see more focus being given to blood disorders like sickle cell, as historically the development of treatments has been slow-going compared to other genetic diseases. Just as the field of hematology is expanding, Murry hopes his other specialty within PATH will also grow in appreciation and financial support.
“It’s critical to get philanthropic support for grassroots programs like PATH,” he said. “We need the initial seed funding from generous donors and people who are as passionate and invested as we are, so that we can have a proof of concept and a strong case coming forward that shows the evidence that this program makes a difference. I bet everyone has been touched by a story of someone struggling to move medically from a pediatric care team to an adult care team. It’s such a real thing that impacts so many.”
Looking to the future, Murry is hopeful the PATH program will expand and continue to help children and young adults find success beyond the walls of Doernbecher, for the rest of their health care journeys and the rest of their lives.
“I am passionate about my work, and the reason is that I love working with children. I think seeing a child thrive and succeed and heal is very satisfying, and it’s the reason why I do what I do,” Murry reflected. “But I think the next level up from that, and even more importantly, is seeing a child go from thriving in pediatric care to moving successfully into adult care, gaining independence and autonomy, and being the driver of their own success and a positive contributor to society.”
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