Nicole Bitencourt, MD, on the Transition From Pediatric to Adult Care

Successfully transferring a patient with a rheumatic condition from pediatric care to adult care can be challenging. Although there are obstacles to a smooth transition, findings from a recent study are now highlighting the importance of such a transition.¹

In this study, among the 141 pediatric patients with a rheumatic illness who were transferred to adult care, the mean time between the final pediatric visit and the first completed adult rheumatology visit was 221 days. The longest gap between care was 1207 days.

According to the researchers, the delay to the adult visit was decreased with continued insurance coverage and referral from a pediatric rheumatologist. Meanwhile, Black race and the presence of connective tissue diseases were associated with high rates of unscheduled health care utilization.

Nicole Bitencourt, MD, who specializes in pediatric rheumatology at Loma Linda University Health in Loma Linda, California, was one of the study’s authors. She answered our questions about the challenges that the transition period presents and how pediatric and adult health care providers can play a role in navigating those obstacles so that their patients continue to be optimally managed.

RHEUMATOLOGY CONSULTANT: You called the transfer from pediatric care to adult care “a vulnerable period” for young adults. What makes this so? 

Nicole Bitencourt: Maintaining continuity of care can be difficult during any transition that occurs in the health care system. However, there are several factors that coalesce to make the transfer from pediatric to adult care potentially very challenging. These include changes with insurance coverage, such as insurance loss after age-based eligibility for Medicaid or Children's Health Insurance Program (CHIP) expiration, and adjustments to the differences in the culture of pediatric and adult health care systems. For instance, pediatric teams may be more predisposed to “fill in” when parental guidance is limited, while adult systems may place greater emphasis on independence and self-management skills. There are also life changes occurring in the lives of emerging adults, like graduating from high school or moving, and so these patients may place a lower emphasis on health-related concerns. Hopefully, a young adult has acquired positive coping skills and has a supportive community to guide them through these challenges.

RHEUM CON: What was the average age of the patients in your study? What do you think pediatric providers should consider when deciding on the best time to transition their patient to adult care?

NB: Patients in this study were an average age of 18.6 years at referral. As is true of several US states, the age of transfer in our study was dictated by insurance eligibility for those publicly insured. In Texas, where this study took place, those with CHIP and Medicaid are often no longer eligible for these programs after age 18 years. This creates a very difficult barrier for these patients during what is already a vulnerable time period. While some may be eligible for an Affordable Care Act plan depending on their legal residency status, they are restricted in the physicians who will accept these insurance plans. While there is limited data available on the best age to transfer to adult care, some experts believe that this transfer should be guided by patient readiness and disease stability. 

RHEUM CON: You found that the mean time between the final pediatric visit and the first completed adult rheumatology visit was 221 days. Ideally, how long should that wait period be? And what can clinicians do to ensure that the gap between visits is within that optimal timeframe?

NB: Time between a pediatric visit and the first completed adult visit will vary by diagnosis and disease activity; however, we can all agree that 221 days is too long, especially for patients who may have more aggressive diseases such as systemic lupus erythematosus (SLE). Most patients with stable rheumatic conditions are seen every 3 to 4 months, and this would be an ideal goal. Having a completed adult visit within 6 months may be reasonable for those with well-controlled and stable conditions, as long as the pediatric rheumatologist has provided refills and monitoring until that first adult visit. Some pediatric clinicians will also have a final pediatric clinic visit after the patient has completed an adult visit to ensure they have established care.  

Having a referral process in place with feedback on a missed or completed visit for this particular group of patients in both the pediatric and adult clinics is important to ensure a smooth transfer of care. Additionally, the role of communication cannot be over-emphasized. Most adult clinicians who accept these referrals would be happy to receive a call to discuss their new patient and to accommodate a sooner appointment if needed. 

RHEUM CON: What do your findings regarding unscheduled utilization in care and progression to end‐stage renal disease (ESRD) or mortality suggest about current gaps in management and the need for improvement in patients’ transition of care?  

NB: We reported how over a quarter of patients with rheumatic illnesses had unscheduled hospitalizations and over half had emergency room visits during the year following the final pediatric visit. In our multivariate analysis, unscheduled care utilization was most associated with having a connective tissue disease and with Black race. This suggests that in settings with limited resources, interventions may be directed to these particular groups of patients. 

ESRD and mortality are very serious adverse outcomes that occurred only among patients with SLE or an overlap syndrome—15% of patients with a connective tissue disease in our cohort. Our study was not designed to determine the exact reasons for these outcomes, though it is important to note that patients in our population were vulnerable to poor outcomes due in part to their insurance status (patients in this study had either public or no insurance coverage at referral and transferred to a county hospital clinic). Gaps in care were involved among all patients who passed away or developed ESRD—a finding which requires further study.

RHEUM CON: What are the main challenges that an adult rheumatologic provider might face when treating a patient who has recently transferred from pediatric care, and how can those challenges be overcome? 

NB: A patient (and their family) who is transferring from pediatric care may have built a relationship with the pediatric care team over several years that may have started during one of the lower points in their lives. Starting anew may be challenging for someone who has not known a different system, and it may take months and even years to build a relationship with a new physician. It is common for pediatric physicians to have a good understanding of the patient’s social history and family dynamics, and it may be helpful to dive into some of these areas and how they impact the patient’s life when building that relationship.

Disease management itself may be different in adult care compared with pediatric care, but cultural differences may present an even greater challenge during the transfer: communication with the patient (rather than family), how missed appointments are handled, and how ancillary services are accessed may all be different than what the patient is used to. Orienting the patient (and family) as to how the clinic operates may be helpful. 

While many physicians do not feel that addressing insurance barriers is their area of expertise, I think it is important to at least direct patients to someone who can help them problem-solve. If the physician is not sure how someone will access care, it is unlikely that a young patient has figured it out.

It is also important for pediatric clinicians not to project negative attitudes or distrust of the adult health care system onto patients and families. The expectations of an adult system are different, and pediatric systems should instead focus on preparing patients and their families to acquire the skills necessary for managing a lifetime with a chronic illness. 

Reference:

1. Bitencourt N, Bermas BL, Makris UE, Wright T, Reisch J, Solow EB. Time to completed visit and healthcare utilization among young adults transferring from pediatric to adult rheumatologic care in a safety‐net hospital. Arthritis Care Res (Hoboken). Published online September 9, 2020. doi:10.1002/acr.24409