Transitioning pediatric patients to adult care an ‘ongoing, years-long process’
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The overwhelming majority of rheumatology practices have no formal policy for transitioning pediatric patients to adult care, according to a presenter at the 2023 AWIR annual conference.
“Unrealistic expectations, parental handholding and lack of education tend to be associated with more negatives outcomes after transition,” Marla Guzman, MD, FAAP, of the pediatric rheumatology department at Summit Health, in New Jersey, told attendees.
Guzman focused primarily on juvenile idiopathic arthritis and lupus.
“JIA is one of the most common rheumatologic diseases of childhood,” she said. “In lupus, these children tend to go into adulthood with active disease for the most part. These are the ones we really worry about when they move on.”
Guzman explained a conundrum that is common in young adults with JIA who failed to transition properly.
“Patients with low disease activity actually have flares,” she said. “They think they do not need care so they don’t get it.”
Data show that approximately 50% of adult patients with JIA who need care fail to follow up in adulthood, according to Guzman.
“Patients often are not going to that first adult visit,” she said. “That is obviously not ideal.”
As a result, adults with JIA experience osteopenia and osteoporosis.
“There are continued reports of pain,” Guzman added. “Depression and anxiety can continue into adult hood.”
The story is similar in lupus, with patients reporting renal and cardiovascular disease, along with high use of steroids and immunosuppressive medications.
Some data show that patients with childhood lupus wait about 7 months before their first adult rheumatology visit, which is “far too long,” according to Guzman.
“They don’t feel ready to transition yet,” she said. “Transition data show that 29% [of lupus patients] experience worsening of disease activity at their first adult visit.”
The solution to many of these issues is a transition policy for pediatric patients. However, having such a document on file is the exception rather than the rule.
“Only 8% of pediatric rheumatology practices have a formal transition policy,” Guzman said. “Only a third had a dedicated transition coordinator.”
Guzman called on all rheumatologists to “streamline and standardize” transition practices for pediatric patients. Additionally, she offered some tips for how to accomplish that goal, including a note that the ACR website contains templates for writing these policies that practices can edit and complete with their own specific information.
The first conversation about transitioning to adult care should come when the patient is 12 years old, according to Guzman.
The next component is “tracking and monitoring” of the patient using a flow sheet or the patient’s electronic health record.
Transition “readiness” should be assessed when the patient is aged 14 years, Guzman said.
“There is not really one good way to assess that,” she added, noting that adolescents grow, develop and interact at different rates.
“Just because the child is older does not mean they are ready to transition,” Guzman said. “An individualized approach is based on the kids’ level of autonomy.”
In addition to level of autonomy, patients should be assessed for ability to use health care services, needs for self-care, communication ability and other factors.
A tip to increase autonomy is to lean into the adolescent habit of spending time on their phones. Guzman said she encourages these patients to download apps for the pharmacy and health system, develop a medical ID on their phone, refill prescriptions with text alerts, use the portal to chat with their doctor and use the notes app to journal symptoms.
Between ages 14 and 18 years, patients and practitioners should be actively planning for transition to adult care, according to Guzman.
“Make sure they understand that they will be making decisions, and not their parents,” she said. “Make sure they understand that there will be privacy and consent.”
Meanwhile, plans for emergencies should be articulated and a medical summary should be created for the adult provider, Guzman added.
Efforts should be made to build a rapport with the adult provider, and confirmation that the new adult patient will make and attend the appointment is critical.
“Until they see the adult provider, we can keep seeing them,” Guzman said. “It is our responsibility to care for them until they have their first adult visit on the other side.”
Transition could be complete between ages 18 and 23 years, according to Guzman.
“Try to communicate with the pediatric patient 3 to 6 months after the first adult visit,” she said. “Only about 50% of pediatric rheumatologists receive correspondence back from the adult provider after the patient has transitioned.”
As a final point, Guzman said she does not expect overnight success in overcoming these hurdles.
“The key takeaway here is that transitioning is an ongoing, years-long process,” she said.
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Guzman M. Transitioning the Pediatric Rheumatology Patient. Presented at: Association of Women in Rheumatology annual conference; Aug. 10-13, 2023; Orlando, Florida (hybrid meeting).
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