Mind the Gap: Guiding Pediatric Patients into Adult Care

As a pediatric patient transitions to adult care, the challenges can be overwhelming, not just for the patients…but also for the clinician. Maneuvering through this often arduous transition takes skill, compassion, and, most importantly, patience.

“I felt like I got dropped off a cliff.”

These are the words Carol Greenlee, MD, FACE, FACP, of Western Slope Endocrinology in Grand Junction, Colo., remembers her patient with type 1 diabetes saying, describing his transition from pediatric to adult care.

It’s unfortunately a common sentiment among young adults with chronic conditions originating in childhood as they “age out” of their pediatricians’ care unprepared to navigate health care as an adult. The fragmentation and silo care of our current health care systems contribute to the widening and deepening gaps in care that these young adults encounter. For young adults with type 1 diabetes, these gaps in care can lead to increased risk for not only early onset of chronic complications but more acute and severe complications such as ketoacidosis and even death.

And this is an age group that is already going through some significant changes: They’re moving out of their parents’ homes to start college or find a job, often in a new town. “If you look at that age group between 18 and 25, they actually have less healthcare encounters than the age groups before or after them,” Greenlee says, “even though it’s a critical time for preventive efforts and care, in addition to their chronic care. If they have a chronic endocrine disease, it’s a time when they neglect it more than normal. They develop complications that might not otherwise develop with more continuity in their care.”

“We see people with T1D dying unnecessarily in this age group,” she continues, “just because of this gap.”

“You see this young adult, who’s not as sick as my 74-year-old who’s had an amputation and is on dialysis,” she says, “but they need a lot of time, and they need a lot of time for psychosocial issues in addition to their management issues. They still need knowledge and skill acquisition.” – Carol Greenlee, MD, FACE, FACP, Western Slope Endocrinology, Grand Junction, Colo.

There are several reasons they neglect their healthcare: A lot of the young adults who are transitioning from a pediatric endocrinology clinic are used to their parents or caregivers taking care of all their medical decisions, so they never learn for themselves how to obtain or use insurance, or even refill a prescription. “They need guidance and assistance,” Greenlee says.

That guidance and assistance must come in the form of communication and collaboration between the pediatric side of an endocrine patient’s care, and the adult-care side when the patient reaches this critical age. As an example of this gap, in a study of 418 survey responses from endocrinologists published in Diabetes Care, one of the conclusions was “only one-third of adult endocrinologists reported the opportunity to review pediatric records of young adults entering their practice, although three-quarters felt it was important to do so.” The researchers, led by Katharine Garvey, MD, MPH, of Boston Children’s Hospital, also included several pertinent quotes from the endocrinologists who responded, sentiments which may or may not sound familiar to those reading this story, but more on those later.

When it comes to minding this gap and eventually bridging it, there are many challenges and opportunities, so here we’ll take a look at those, as well as what the Endocrine Society and clinicians working on this problem are doing to help prevent young adults with T1D from feeling like they were dropped off a cliff.

It Takes a Village

Some of the endocrinologists surveyed by Garvey and her team responded by saying, “I always plan on running behind with this group” and “It takes a great deal of time…I wish I had more resources to deal with the transition of adolescents/young adults to the adult endo clinic.”

This makes sense, because when a young adult who’s in this gap shows up to the endocrinologist’s office, there’s already a feeling of hopelessness, of being lost, shared by both the patient and the doctor. And the endocrinologist knows he or she will have to spend a lot of time talking about things that have little to do with medical care. “I often spend more time on social issues than actual medical decision-making,” writes another survey respondent.

“This is a difficult time, not only for the patient, but for the adult-care endocrinologist,” says Sally Radovick, MD, a professor of pediatrics and senior associate dean for clinical and translational research at Rutgers Robert Wood Johnson Medical School, New Brunswick, N.J. “Because they may feel unprepared to deal with this type of patient.”

And these problems are compounded by the fact that there’s a shortage of endocrinologists, and that shortage is predicted to continue into the near future unless some fairly drastic steps are taken. “The workforce is declining,” Radovick says. “With the workforce shortage, there’s lack of time, very busy practices, and probably inadequate payment for taking on these types of patients.”

But that doesn’t mean there aren’t simple steps that can be taken now, so that the burden of care is lifted from both the patient and his or her endocrinologist. According to Greenlee, the solutions start on the pediatric side of care. Greenlee sees both children and adults in her practice, so she is uniquely positioned in her experience with this. She says that she begins asking her pediatric patients at around age 12 or 14 the tough questions about how they are going to handle diabetes care on their own when they move out of their parents’ homes, in order to determine their grasp of and gaps in their understanding and skills, and whether they truly have a grasp on their disease. “In my appointments, I would do teaching with them: What are ketones? How do you check for them? What do you do if they’re positive?” she says. “So those types of training things need to take place. Clinical staff as well as parents can help with some of that. It doesn’t always have to be the doctor.”

“[As pediatricians] we do a very good job at talking to patients about things like how to use their pen,” Radovick says. “But one of the things we haven’t done, because we haven’t thought about the adult transition, when we start patients, is talk to them and their families about transition. When they’re five years old and starting on growth hormone, we should talk about what’s going to happen when they’re 15. We need to educate ourselves to do that.”

Robert Zimmerman, MD, an adult-care endocrinologist with the Cleveland Clinic has helped children transition into adult care by teaming up with his colleagues. Patients who are ready to be transitioned are referred to him, and once a month he “goes up to the pediatric floor” and holds a combination clinic, during which he works in tandem with the pediatric endocrinologist. “She [the pediatric endocrinologist] sees the patient and then I come in and she introduces the patient to me,” Zimmerman says. “Then we go over where the patient is at, and depending on the maturity level of the patient and the ability to get into my schedule determines whether they stay for a while in the pediatric clinic or they just transition straight to the adult clinic.”

Radovick says that her clinic holds “peer meetings,” in which patients discuss their diseases, as well as diabetes camps and the like. She sees a future in family-centered medical homes during the transition period, in which nurses, social workers, psychologists, insurance specialists, and so on, all work together to help the adolescent to transition to adult care. “But it’s very difficult in our current health system,” she says.

As Greenlee says, the transitioning to self-care needs to continue taking place on the adult-care side of things, but not every clinician has the luxury of being able to go upstairs to meet with the pediatrician. Ideally, the adult-care practice would receive a transfer summary and/or pertinent medical records from the YA’s pediatric practice, then the adult-care endocrinologist could review that summary with the patient while inquiring about areas of concern for the patient and areas s/he wants to focus on. The Endocrine Society has developed a toolkit to help with just such a transfer (see below for more information.) Referring to the ES self-assessment check list as something reviewed with all patients when they transition from pediatric care “normalizes” questions ranging from comfort with filling prescriptions to dealing with diabetes.

But again, sometimes the actual transfer to another endocrine or primary care practice doesn’t take place when the young adult leaves pediatric care. They might have moved away to a new town or just be unattached to any source of care even in their home town. Regardless, this lack of regular follow up coupled with their inadequate knowledge and skill set can lead to more than a headache for the adult-care clinician when the patient finally comes in for an appointment. It can also lead to heartache.

At What Cost?

“I find it frustrating at times because they do not realize the potential severity of their disease. They no-show for appointments at much higher rate than other adult patients.” Words from another respondent to Garvey’s survey.

This isn’t hard to imagine. The young adult shows up to a new endocrinologist’s office after a very long relationship with his or her pediatric endocrinologist, and now this new clinician wants to change everything on the first visit, at a time when many other changes are occurring in this patient’s life. “That’s a big change for them, but to change everything that first appointment before they’ve established some trust is a big turnoff to them, and then that frustrates the adult-care clinician,” Greenlee says.

Of course, that isn’t always the scenario, but the patients in this age group no-show or drop out for several reasons. These are young adults with competing priorities, and a 19-year-old’s brain is still developing. Those parts of the brain that haven’t matured control executive function, organizational skills, and the understanding of consequences. They also don’t respond well to emails or return voicemails, so they may not receive appointment reminders. And when that’s the case, Greenlee says it may be time to think about new technology that is attractive to this age group – like social media apps — and to rethink your no-show policy.

“People have said that that’s an economic hardship on the adult-care provider,” she says. “It can be. It sure can be. My other patients, if they no-show twice, I’d be charging them a no-show fee or could fire them if they were repeat no-showers. That’s a really hard thing to do with this young adult. You want to be teaching them responsibility, but maybe we need a little bit different policy or a little more direct explanation to them.”

But for Greenlee, the bigger financial burden is the time spent with these young adults. Their appointments can take much longer, especially if the clinicians have to help instruct on how to refill a prescription or order supplies. It’s more time for the pediatric endocrinologists as well, if they’re making sure their child or adolescent patients understand their medications and the management needs of their condition. “You see this young adult, who’s not as sick as my 74-year-old who’s had an amputation and is on dialysis,” she says, “but they need a lot of time, and they need a lot of time for psychosocial issues in addition to their management issues. They still need knowledge and skill acquisition. So that extra time, I think, is a bigger barrier financially than a no-show or two.”

Zimmerman sees some patients in shared medical appointments, young adults who “graduated” from shared medical appointments in the pediatric clinic. “It’s really kind of fascinating to see how similar the issues are,” he says. “They can all work together; they’re all going through similar issues.”

These young adults are all at various stages in their lives, Zimmerman says, whether they’re working or looking for a job, in college or applying to schools, or older patients with kids of their own who just want a group environment in which to work on their disease. Zimmerman takes care of all the medical business – discussing blood sugar or making notations in a chart – and he and a diabetes educator are able to cover other topics the psychosocial issues like being sexually active or alcohol consumption (a topic he says is of interest to the patients and with which they may be having trouble).

“The advantage of the individual visit is that it’s quicker,” Zimmerman continues. “The advantage of the shared medical appointment is that it’s a longer visit ultimately, and you’re covering problems associated with four or five patients. They’re learning about how to deal with their own problems by listening to what’s being done for these other patients. There’s a lot of comradery that goes on.”

“This is a difficult time, not only for the patient, but for the adult-care endocrinologist because they may feel unprepared to deal with this type of patient.” – Sally Radovick, MD, professor, pediatrics; senior associate dean, clinical and translational research, Rutgers Robert Wood Johnson Medical School, New Brunswick, N.J.

Still, these costs are nothing compared to what happens when the young adult does find himself or herself falling off the cliff – emergency room visits, hospitalizations, costs associated with developing any of the severe comorbidities due to lack of care.

“What hurts my heart most is the personal cost,” Greenlee says. “I’ve seen people resurface in their 30s after what I call ‘wandering in the wilderness’ for 10 years. It’s amazing how they get insulin.” She says that these patients will go back to R&N insulin because they can get it over the counter. Or she tells the story of how one of her young adult patients figured out he could call the pediatric hospital after hours and get the on-call resident to send in an insulin prescription. The resident would have no idea when this patient’s last appointment was or how old he was or anything else about him. Another patient convinced his family doctor to prescribe insulin. The doctor apparently wasn’t comfortable managing anything else to do with this patient’s diabetes, but he would at least give him insulin.

“And then they show up again and they’ve got protein in their urine, they’ve got retinopathy, and your heart just sinks and you feel so sad. That causes the cost that I think all of us would like to stop,” Greenlee says.

The first rule in medicine is “Do no harm.” Of course, the point is for doctors to not harm patients, but at some point, that has to extend to doctors not harming doctors. In this instance, it’s all about keeping everyone involved informed. Greenlee says that the patients need to acquire knowledge, but if clinicians on both sides could communicate and collaborate, could help with the information transfer, it could save the patients – and the doctors — from being dropped off the proverbial cliff.

— Bagley is the associate editor of Endocrine News. He writes about the ongoing debate on whether growth hormone has negative effects later in a pediatric patient’s life elsewhere in this issue.