Transition from pediatric to adult care is a process, ‘not just a single point in time’
Click Here to Manage Email Alerts
Transitioning a pediatric rheumatology patient to adult care, ideally, should be a holistic process that begins in early adolescence, according to speakers in a panel at the 2021 Rheumatology Nurses Society annual conference.
Carolyn Zic, MSN, FNP-BC, a rheumatology nurse practitioner in the Section of Pediatric Rheumatology at the University of Chicago, answered the fundamental question: what is transition?
“It is defined as moving from a pediatric care model to an adult care model,” she said. “It is not just moving from one provider to another.”
Zic suggested that making pediatric patients and their parents aware that their entire management paradigm will shift when the child enters adult care is critical to minimizing the obstacles and anxieties that can crop up as the transition occurs. This awareness should begin not when the patient is 16 or 18 years old and on the cusp of their first adult visit, but much earlier.
“We prepare children during early adolescence,” Zic said.
One reason for this is that many patients fall out of care during transition. “Teenagers and young adults have a lot of transition at that time,” Zic said, noting that they go off to college or trade school or simply move out of their parents’ home. “This can lead to poor health outcomes. It is really critical that the transition be successful.”
With that in mind, Zic reviewed six core elements to a successful transition.
The first element is having an actual transition policy in place. “It is hard to implement a transition strategy if you do not have a policy that puts everyone on the same page,” Zic said.
Unfortunately, many health centers have no such policy on the books, according to Zic.
The next step is transition tracking and monitoring. Zic suggested that because so many patients are lost in the shuffle, follow-up is critical.
A transition readiness assessment for patients is the next component, according to Zic. Understanding the areas where a child is deficient — being on time or failing to remember the names of the drugs she is taking, for example — can help the clinical care team focus on her individual needs.
Having a transition plan in place for each individual patient is the next step, followed by integration into adult care.
The final component is transition completion/ongoing care. “There is a tendency to put most of the burden on the pediatric rheumatologist,” Zic said. “But adult caregivers also have responsibility.”
If most or all of these steps are completed, it may be possible to overcome some of the barriers that lead to poor transition into adult care, according to Zic. “A lot of the barriers have to do with fear and anxiety,” she said. “There are also some negative views about what adult care looks like.”
More broadly, systemic issues like navigating the health insurance system and simply moving from one location to another can be daunting for transitioning pediatric patients.
“The key point I really want to make is transition is a process,” Zic said. “It really is not just a single point in time.”
Barbara Kienzle, BSN, RN, a pediatric rheumatology nurse navigator at Augusta University Health, in Georgia, added that a transition team comprised of pediatric and adult providers, nurses and advanced practice providers is the gold standard for ensuring that these patients engage in and trust the process.
“It would be great if you could have a social worker on your team — that way, they can delve into more of the individual social needs of your family and your budding adult,” she said. “They can also work with the insurance because that play a big role in where the adult provider is going to be and who that is going to be.”
Kienzle acknowledged, however, that many health systems are unable to dedicate all of these staff members to each patient. “If you are not in a position to have this whole team, try to find a transition navigator to oversee the steps,” she said.
After closely monitoring patients through their early teens, at around age 16 or 18, the caregiver will “kick the parents out of the room,” Kienzle said. If the patient has been prepared properly, she will be able to answer questions about her disease, medications and insurance carriers without having to ask her parents.
Introducing the patient, with her parents, to the new adult team around this age — but before the first solo visit — is also recommended. “That way, the adult rheumatologist is not foreign,” Kienzle said. “That takes away a lot of fear and anxiety from the patient and their family.”
If such a visit is logistically impossible, a three-way telemedicine call with the provider, patient and her family will do the trick.
For Kienzle, while the preparation begins at age 12 or 14 years, the actual transition occurs between ages 18 and 22 years and can be complete by age 25 or 26.
“Adult providers need to know that the light bulb does not just go off at age 18,” Kienzle said. “They need to tailor their visits for younger adults.”
Collapse
Kienzle B, Zic C. Transitioning from Pediatric to Adult Care and How to Navigate This Journey With Your Rheumatology Patients. Presented at: Rheumatology Nurses Society annual conference; August 4-7, 2021 (virtual meeting).
Click Here to Manage Email Alerts