Approximately 50% of young adult patients with childhood-onset rheumatic diseases become lost to follow-up within the first year of transferring to adult rheumatology care, mirroring the statistics of other subspecialties.1,2 One of the challenges cited most consistently by young adult patients and their families relates to differences between rheumatology care delivery in the pediatric and adult settings.3 Indeed, even when the offices are physically located across the street from each other, significant differences in culture and practice can make it difficult for patients to integrate smoothly into adult rheumatology clinics.4
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Explore This IssueOctober 2021
A major hurdle is the lack of familiarity that both pediatric and adult providers have with each other’s practices. This knowledge gap may prevent pediatric providers from adequately preparing patients for what to expect after transfer, and it makes it difficult for adult rheumatologists to reduce the whiplash patients feel when they enter adult practices.5 Transferring from an academic medical center (where nearly all pediatric rheumatologists practice) to a private practice setting can further compound the culture shock patients and their families experience.
As medicine/pediatrics-trained physicians and as rheumatologists, we offer our observations and impressions regarding key differences between pediatric and adult rheumatology with the patient perspective forefront (see Table 1). We hope these insights will enable pediatric and adult rheumatologists to guide young adults successfully through their transfer from pediatric to adult care.
Several philosophical differences exist between the care provided in pediatric and adult rheumatology settings, stemming in part from the distinction between the family-centered orientation of pediatrics and the patient-centered culture of internal medicine. Provider awareness of these differences can help mitigate patients’ misperceptions about adult providers and skepticism about the care they provide.
Triadic vs. Dyadic Interaction
At the heart of a pediatric rheumatology visit is a family-centered interaction in which the patient, parent and provider work together to address the patient’s medical needs. This triad is in contrast to the one-on-one exchange between the patient and provider that characterizes a typical adult rheumatology visit.
Patients & their parents notice the reduced time spent with the adult rheumatologist &, without being privy to the length of an appointment slot, may develop the impression that the adult rheumatologist is unengaged, hurried or even uncaring.
The involvement of a guardian at the pediatric visit decreases the pressure on the patient to raise questions and provide answers, and it fosters a collective decision-making process. When a patient transfers to an adult clinic, the newfound responsibilities of self-advocacy and self-management required for a successful visit can be overwhelming.
Pediatric providers can prepare patients for this transition starting at age 12 by conducting a portion of each visit without the guardian present and coaching the patient in transition-readiness skills.1 In the initial visit to adult care, providers should assess the patient’s self-management skills and explain the adult approach to care, including how HIPAA (the Health Insurance Portability and Accountability Act) affects guardians’ access to medical information for patients older than 18.
Patient Interests & Aspirations
Pediatric rheumatology patients are routinely invited to discuss their hobbies, as well as their educational and vocational goals, whereas due to time constraints, adult clinic visits are more likely to focus conversations on disease and treatment. From the pediatrician’s perspective, discovering patients’ interests and aspirations not only serves as a way to connect with patients, but also provides information about the patients’ disease activity, because changes in school performance and inability to participate in enjoyable activities can be important clues to health status.
At the time of transfer, a pediatric provider can help create a basis for rapport between the patient and the new adult provider by ensuring the transfer letter and other transfer documents include a few fun facts or interesting personal details about the patient, which the adult provider can use as a springboard for conversation.6
Adult rheumatologists will want to prioritize creating a personal connection in the initial visit, because many young adults report this connection to be a prerequisite for the development of a trusting and lasting relationship with their providers.3
Table 1: Common Differences Between Pediatric & Adult Rheumatology Practices*
|Pediatric Rheumatology Practice||Adult Rheumatology Practice|
|Philosophical||Family-centered interaction||Patient-centered interaction|
|Discussion of educational and vocational goals||Focus on medical concerns|
|Policies & Procedures||Longer clinic visits||Shorter clinic visits|
|Leniency with late arrivals and no-shows to clinic appointments||Stricter enforcement of arrival time cutoffs and no-show policies|
|Clinical Care||Comprehensive physical exam at every visit||Focused physical exam at follow-up visits|
|Goal of inactive disease or complete remission||Tolerance of low disease activity without functional impairments|
|Rare use of steroids in the treatment of juvenile idiopathic arthritis||Treatment of intermittent rheumatoid arthritis flares with steroid tapers|
|Use of more frequent and/or higher doses of anti-rheumatic medications||Lower doses of certain anti-rheumatic medications relative to body weight|
|More frequent screening for asymptomatic uveitis and for rare complications of systemic disease||More frequent screening for common adult comorbidities|
|Efforts made to overcome barriers to medication adherence||Focus on patient accountability regarding medication adherence|
|Clinic Setting||Child-friendly clinic environment with bright colors and games||More austere clinic environment|
|Multidisciplinary clinics to optimize care coordination and reduce clinic appointments||Distinct clinic appointments for individual subspecialties|
|Social work, physical therapy, and child life specialists available in many rheumatology clinics||Rare availability of on-site ancillary services|
*Adapted from Sadun and Schanberg; 20185
Policies & Procedures
In addition to cultural differences, there are structural distinctions between pediatric and adult rheumatology care. Patients and families leaving pediatric rheumatology are accustomed to longer appointments and more lenient late and no-show policies. Adult offices are typically less equipped to make such accommodations due to patient volume, which can catch transferring patients off-guard and negatively impact their relationships with adult providers.
Pediatric rheumatology clinics typically allot 30 minutes for return appointments to allow the provider to take a history from both the patient and the parent, conduct a full physical exam and assess how the patient is doing socially, emotionally, and academically.
Adult rheumatology return appointments, however, are rarely longer than 20 minutes and, occasionally, as short as 10 minutes. Patients and their parents notice the reduced time spent with the adult rheumatologist and, without being privy to the length of an appointment slot, may develop the impression that the adult rheumatologist is unengaged, hurried or even uncaring.
To mitigate this risk, pediatric providers can prepare families to expect shorter appointments, while adult providers can take care during the initial visit to clarify the anticipated length of follow-up visits.
Enforcement of Clinic Policies
In pediatrics, considerable leniency is shown toward patients who arrive late to clinic appointments because it is recognized that punctuality is in the hands of their parents. Unfortunately, an unintended consequence of this approach is that families may grow comfortable with the idea they will be seen regardless of their arrival time.
In adult clinics, patients are more likely to be held accountable for their tardiness to demonstrate fairness to other patients; a patient who arrives late to an adult clinic may be asked to reschedule, and someone with repeated no-shows may be discharged from the clinic. Thus, transferring patients benefit from clear communication regarding the adult clinic’s late and no-show policies, as well as when and how these policies are enforced.
Differences in Clinical Care
Although no two clinicians practice identically, commonalities in the practices of pediatric rheumatologists can be distinguished from customary practices in adult rheumatology care. Often, these differences are readily apparent to patients and families, who may have grown accustomed to one routine and note a stark contrast after transferring to adult care.
Nearly every pediatric rheumatology visit includes a full musculoskeletal exam, regardless of active complaints, whereas in adult rheumatology practice, the physical exam is more targeted, based on the patient’s history, and a provider may choose to examine only the joints deemed most pertinent that day. This practice difference may stem, at least in part, from the fact that younger children may be less attuned to joint symptoms or less able to articulate them, especially because many oligoarticular arthritis patients experience painless swelling. Therefore, patients come to expect a comprehensive musculoskeletal exam, inclusive of temporomandibular joint (TMJ) examination because TMJ arthritis occurs in ~50% of JIA patients.7
When patients transition from pediatric to adult care, they may consider the abbreviated exam perfunctory and perceive the adult rheumatologist as providing suboptimal care. For these young adult patients, it may be helpful to be particularly thorough in the physical exam, especially early on.
Goal of Remission vs. Functionality
Another key difference between pediatric and adult rheumatology practice is the pediatric rheumatologist’s emphasis on achieving inactive disease, whereas in many circumstances, the adult rheumatologist may tolerate minimal disease activity so long as it does not interfere with functionality.
In pediatric rheumatology, providers strive for remission because even subtle inflammation in a joint with an open growth plate can lead to premature fusion of the growth plate and create leg-length discrepancies and other long-term deformities. In addition, after a period of inactive disease on immunomodulatory therapy, pediatric patients are often able to wean off all medications.
Finally, tolerance of minimal disease in a child is undesirable because chronic, subtle, ongoing disease activity is likely to result in substantial disability over a patient’s lifetime, whereas for a patient who develops arthritis much later in life, the risk-benefit ratio may lead to tolerance of low disease activity due to the potential harm of infection from aggressive immunosuppression in older patients.
In light of the pediatric rheumatologist’s typical insistence on no disease activity, allowance of minimal residual disease activity may take young adult patients by surprise. Shared decision-making about treatment options can increase patients’ confidence in their adult rheumatologist.
Although steroids are a necessary part of therapy for pediatric-onset lupus and vasculitis, oral steroids are rarely used to treat arthritis in children in the U.S.; instead, non-steroidal anti-inflammatory drugs (NSAIDs) and joint injections are the mainstays of treatment for acute flares in juvenile idiopathic arthritis (JIA), with pediatric rheumatologists being quick to escalate steroid-sparing medications if flares are recurrent.
In pediatrics it is recognized that steroids can stunt linear growth—causing reduced height potential—and can lead to lifelong obesity, among other long-term side effects. Patients and parents therefore may be startled the first time an adult rheumatologist prescribes a prednisone taper for an arthritis flare.
In addition, for intra-articular steroid injections, former pediatric patients may be accustomed to receiving joint injections under conscious sedation, which is rarely offered in an adult rheumatology clinic.
These differences should be explained to young adult patients and their families both before and after transfer.
Although it may seem counterintuitive, pediatric patients are sometimes on higher doses of immunomodulatory therapies than are generally used in adult patients, accounting for body weight. For example, infliximab is typically dosed at 6–10 mg/kg every four weeks for JIA, compared with 3–5 mg/kg every eight weeks (one-quarter of the pediatric dose) for rheumatoid arthritis.8,9
Similarly, methotrexate is prescribed for pediatric arthritis at 0.5–1 mg/kg (or 15–30 mg/m2) to a maximum of 25 mg, meaning an average-sized 8-year-old child may be on the same 25 mg dose of methotrexate as a 200 lb. adult.10 Aggressive dosing in pediatrics stems from pharmacokinetic data that show accelerated drug metabolism in children; however, drug metabolism gradually changes over the course of a person’s life, rather than diminishing on the day of transfer from pediatric to adult care, so attempts to switch suddenly from pediatric dosing to adult dosing can result in flares.10
Patients are often apprehensive about a new doctor making medication adjustments, and deferring de-escalation of therapy for several visits can help build trust.3 Once rapport has been established, an adult rheumatologist may attempt to gradually reduce medication for patients with well-controlled disease.
Another difference in medical care relates to screening protocols. Pediatric-onset lupus and systemic JIA (the pediatric equivalent of adult-onset Still’s disease), for example, often have a worse prognosis than their adult counterpart diseases, including increased rates of interstitial lung disease and pulmonary hypertension.11,12 Thus, pediatric rheumatologists often screen for these complications on a regular basis (for example, with annual echocardiograms and pulmonary function tests), whereas an adult rheumatologist may perform screening at diagnosis and then only repeat testing if relevant symptoms arise.
Pediatric rheumatologists also keep close track of uveitis screening visits for JIA patients and screen JIA patients for TMJ disease at each visit. On the other hand, the adult rheumatologist may screen more regularly for osteoporosis and hyperlipidemia. Families may be confused by the change in screening protocols and benefit from an open discussion about the rationale for ordering or deferring certain tests.
Response to Medication Non-Adherence
Perhaps one of the most striking differences between pediatric and adult rheumatology relates to how providers handle poor medication adherence. Adult rheumatologists make efforts to support medication adherence (e.g., reducing pill burden), but ultimately hold patients accountable for taking medications.
Pediatric rheumatologists, however, may use intravenous medications for children who fail to take oral medications. Importantly, we know the frontal lobe is not fully myelinated until approximately 24 years of age, and thus, pediatric providers continue to make accommodations for adolescents and young adults who struggle with executive functions, including consideration of future consequences.13
For adolescents and young adults seen within the adult system, providers may need to address adherence challenges with infusion medications while waiting for patients’ neurobiology to mature.
Differences in Clinic Setting
Finally, patients transitioning from pediatric to adult care may notice differences in the resources available in adult rheumatology clinics compared with their pediatric counterparts. Resource differences may be magnified if a young adult transfers from pediatric rheumatology at an academic medical center to a smaller, private practice, adult rheumatology office.
A child entering a pediatric clinic is typically met with a brightly colored office space and games to play with during the visit. An adult clinic, in contrast, is more likely to have bare walls and few, if any, specific elements intended to provide comfort or entertainment.
Patients often comment the starker adult clinic environment feels harsh when they first transfer to the adult setting, which may result in patient apprehensiveness about the visit.3
Conversely, some teenage patients may perceive the pediatric clinic environment to be childish, and it may prompt them to transfer to adult care.
Rethinking the physical clinical space for young adult patients could be a consideration to foster a youth-friendly environment.
For patients with rheumatic conditions that require multidisciplinary care, coordinated clinics are more common on the pediatric side. For example, patients with lupus nephritis may be seen in a combined rheumatology-nephrology clinic. Patients who lose access to multidisciplinary clinics as they transition to adult rheumatology may perceive their care as fragmented and may have an increased number of no-shows as they struggle to navigate an increased number of appointments.
Attempts by an adult rheumatology office to group appointments with other specialists on the same day can be helpful in overcoming barriers, although this goal may not be feasible in all settings.
Tolerance of minimal disease in a child is undesirable because chronic, subtle, ongoing disease activity is likely to result in substantial disability over a patient’s lifetime.
Model of Care
Pediatric rheumatology clinics commonly feature a team of social workers, physical and occupational therapists, and/or child life specialists to improve the rheumatologic care and overall well-being of patients. For example, social workers embedded in pediatric rheumatology clinics are trained to provide emotional support to children living with chronic illness, promote medication adherence, facilitate transportation to and from visits, and encourage formal psychiatric care when appropriate.
Adult rheumatology clinics rarely have a dedicated, on-site social worker and generally refer patients to outside clinics or online resources on an as-needed basis for physical therapy and other ancillary services.
As a result, patients transitioning from pediatric to adult care may perceive a void and may benefit from early referrals to ancillary services, direct assistance in building their own multidisciplinary teams and identification of a point person or navigator to whom they can turn first with questions.
The process of transferring young adult patients from pediatric to adult rheumatology care is complex. In this article, we focused on differences between pediatric and adult rheumatology practices, which can create challenges for patients and families as they leave a familiar setting with one set of rules and arrive in a foreign environment with a whole new set of rules.
Variations in practice philosophy, clinic policies and procedures, medical practices and clinical environments can result in patient confusion, anxiety and dissatisfaction.3 These patient perceptions, regardless of the intent of providers, can alienate patients and lead to loss of follow-up and poor disease outcomes.
We call upon both pediatric and adult providers to learn about the care that patients receive across the age spectrum and to help create a bridge over troubled transition waters, with the goal of guiding patients more intentionally from pediatric to adult rheumatology care. The health of our patients depends on it.
Sarah D. Bayefsky, MD, is a second-year adult and pediatric rheumatology fellow at the University of Pennsylvania and Children’s Hospital of Philadelphia.
Kimberly DeQuattro, MD, is an adult rheumatologist at the University of Pennsylvania. She has a special interest in caring for young adults with pediatric-onset rheumatologic conditions and improving transfer and transitions of care for this vulnerable population.
Rebecca E. Sadun, MD, PhD, is an adult and pediatric rheumatologist at Duke University School of Medicine, Durham, N.C. She has been supported by a grant from the Rheumatology Research Foundation to create a curriculum that teaches rheumatology fellows how to help young adult patients transition from pediatric to adult rheumatology care.
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- Ringold S, Cron RQ. The temporomandibular joint in juvenile idiopathic arthritis: Frequently used and frequently arthritic. Pediatr Rheumatol Online J. 2009 May 29;7:11.
- Tambralli A, Beukelman T, Weiser P, et al. High doses of infliximab in the management of juvenile idiopathic arthritis. J Rheumatol. 2013 Oct;40(10):1749–1755. Epub 2013 Aug 15.
- de Vries HS, van Oijen MG, Driessen RJ, et al. Appropriate infliximab infusion dosage and monitoring: Results of a panel meeting of rheumatologists, dermatologists and gastroenterologists. Br J Clin Pharmacol. 2011 Jan;71(1):7–19.
- Ruperto N, Murray KJ, Gerloni V, et al. A randomized trial of parenteral methotrexate comparing an intermediate dose with a higher dose in children with juvenile idiopathic arthritis who failed to respond to standard doses of methotrexate. Arthritis Rheum. 2004 Jul;50(7):2191–2201.
- Amaral B, Murphy G, Ioannou Y, Isenberg DA. A comparison of the outcome of adolescent and adult-onset systemic lupus erythematosus. Rheumatology (Oxford). 2014 Jun;53(6):1130–1135. Epub 2014 Feb 6.
- Silva JR, Brito I. Systemic juvenile idiopathic arthritis versus adult-onset Still’s disease: The pertinence of changing the current classification criteria. Acta Reumatol Port. 2020 Apr–Jun;45(2):150–151.
- Johnson SB, Blum RW, Giedd JN. Adolescent maturity and the brain: The promise and pitfalls of neuroscience research in adolescent health policy. J Adolesc Health. 2009 Sep;45(3):216–221.