Challenges in Transitioning from Pediatric to Adult Rheumatology Care

The process of transition from pediatric to adult rheumatology care represents a vulnerable period. The patient, physicians, and the patient's family must collaborate in advance planning and preparation to ensure a smooth transfer of care.

As they progress through the teen years, adolescents face numerous challenges in preparation for life as an adult. For the increasing number of adolescents with persistent chronic illness—including many rheumatic diseases—there is the additional task of transitioning from pediatric to adult medical care. This process requires diligence from all parties involved, since poor transitions can easily lead to poor outcomes in the patient’s illness. Findings published in 2009, for example, showed that nearly 30% of rheumatology patients had increased disease activity in the post-transfer period.1

“Transitioning pediatric patients to the adult world is important,” said Sangeeta Sule, MD, PhD, an associate professor of pediatric rheumatology at Johns Hopkins University in Baltimore. “Patients, parents, pediatric rheumatologists, and adult rheumatologists need to be proactive about transition and discuss plans many months and years before the actual transition occurs,” she told Rheumatology Advisor.

A study published in Pediatric Rheumatology in 2015 found that only 42% of pediatric rheumatology patients participating in a transition program were considered have successfully transitioned to adult care 6–8 months after their first appointment with an adult rheumatologist.2 These findings suggest that there is considerable room for improvement in the process.

Key differences between pediatric and adult rheumatology

The pediatric rheumatologist’s approach differs from that of the adult rheumatologist on multiple levels; some of the demands of phasing out of pediatric care can be understood in this context. One major distinction is in the therapeutic approach itself: “We tend to actually be more aggressive than with adults because the kids’ organs are pristine, so we are able to push doses and give more medications,” explained Tzielan Lee, MD, a clinical associate professor of pediatric rheumatology at the Stanford University School of Medicine and Lucile Packard Children’s Hospital, in an interview with Rheumatology Advisor. “Of course, the goal is to get them asymptomatic and into remission as soon as possible,” she added.

Another key difference that must be considered is that the patient’s brain development; because the brain is not fully developed until the age of 25, the thought processes of children and adolescents can vary substantially from those of adults. Peer pressure is a significant consideration, and pediatric patients may value peer input over anything the parents or doctors might say. 

“They are also very in the moment and lack the same degree of forward thinking as adults, so we have to take that into account when counseling them and give them context that makes it resonate,” said Dr Lee. For instance, the doctor might encourage the patient to set medication reminders on the phones or to have a friend remind them.

“We must also encourage them to become their own advocate in the medical system, as well as be a part of their own care,” Dr Lee added. While parents can be very savvy in maneuvering around the system, the patient may not know what pharmacy to go to for their medication, or that they need to bring their insurance card with them to appointments. Grasping points like these are a general part of growing up, but is a more pressing task for patients with chronic illness. 

There can be a lack of understanding even on the most basic level, noted Dr Sule: “Does the patient know what disease he or she has and what medications they are taking?” Such details must be clarified to ensure a successful transfer of care.

A third factor that sets pediatric rheumatology apart from adult rheumatology is the general approach to patient care. “We are holistic-oriented and problem-seeking, and we ask a lot of questions and are pre-emptive much of the time,” said Dr. Lee. Pediatric specialists tend to engage in more directive questioning, rather than relying on patients to initiate the reporting of symptoms. This means that during the transition to adult care, patients must get used to offering such information to the physician if there is a problem.

Making the transition

Although the transition typically takes place over a prolonged period, the specific timing depends on the patient’s—and the patient’s families—readiness. In a 2009 study, mean age at the time of a patient’s final pediatric visit was 19.5 years (17.4–22).1 While Dr Lee frequently sees patients through the college years, others transition right after high school graduation. “Some are just ready sooner” she said, adding that she is often able to get a feel for patient readiness by noting their maturity level and their ability to advocate for themselves and take ownership of their care. Her practice also utilizes social workers to assist in the transition.

A study currently underway by Jamie Lai, MD, a third-year pediatric rheumatology fellow at Stanford, may soon offer additional insight into patient readiness. She is conducting research examining characteristics–particularly resilience–that can predict whether a patient is ready to transition. Resilience is a trait can be learned and might ultimately prove to be a worthy target in readying patients for the change.

“The topic of transitioning should first be discussed when the patient is as young as 11–14 years old,” Dr. Sule advised. Later, various questionnaires and resources can be used to help gauge patient readiness for the change, including a toolkit provided by the American College of Rheumatology.3

“This is a wonderful resource for both adult and pediatric providers. We hope that this tool is utilized as it is a central location to access questionnaires about patient readiness for transition and documents for providers to summarize a patient’s medical condition,” said Dr Sule. The toolkit also offers relevant templates and educational forms that can be used by providers.

Final steps

Before finalizing the transition, Dr Lee directs patients to first find and consult with an adult specialist to make sure they feel comfortable. Fortunately, these new adult patients do not face the same access issues they did as pediatric patients: there are many more adult rheumatologists, while there are fewer than 350 pediatric rheumatologists nationwide.  Following the initial visit with the adult specialist, Dr Lee typically sees the patient one last time, though the process might be extended depending on the case.

“This is a very sensitive time, and if patients don’t transition well, it could create many more issues in the future,” Dr Lee emphasized. “We have to do our best to support them through this risky time period.”

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  1. Hersh AO, Pang S, Curran ML, Milojevic DS, von Sheven E. The challenges of transferring chronic illness patients to adult care: reflections from pediatric and adult rheumatology at a US academic center. Pediatr Rheumatol Online J. 2009;7: 13. doi: 10.1186/1546-0096-7-13
  2. Jensen PT, Karnes J, Jones K, et al. Quantitative evaluation of a pediatric rheumatology transition program. Pediatr Rheumatol Online J. 2015;13:17. doi: 10.1186/s12969-015-0013-0
  3. Pediatric to Adult Rheumatology Care Transition. American College of Rheumatology. Accessed November 17, 2016.
  4. Leading arthritis advocacy groups urge policymakers to address nation’s pediatric arthritis specialist shortage [news release]. Atlanta, GA: American College of Rheumatology. Published October 6, 2016. Accessed November 11, 2016. 

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