A Team Approach Improves the Transition from Pediatric to Adult Care

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Nearly all adolescents and young adults (AYAs) with chronic pediatric rheumatic disease require transfer of care to an adult rheumatologist, yet almost half are lost from care at the time of transfer.^1-3 Although sometimes framed as a discrete event, transition refers to the longitudinal process, often spanning several years, in which AYAs and their families are prepared for the transfer and integration into an adult healthcare delivery model.

Healthcare transition literature often focuses on the role of the pediatric provider, overlooking the importance of the pediatric-adult provider dyad and the continuation of the transition process into the first few years of adult care. This article provides insight into the underlying reasons why improving healthcare transition can be a daunting task, followed by practical tips and resources for the development and implementation of an effective healthcare transition process.

An Emotionally Charged Topic

When the topic of healthcare transition is addressed, it is critical to first understand and acknowledge the emotions that may be elicited from patients, families and the healthcare team, which range from frustration to stress, fear and uncertainty. Why is healthcare transition often such an emotionally charged issue among patients and providers?

First, the stakes are high. Our AYA patients with chronic rheumatic disease are often medically complex with higher rates of mortality and organ-threatening morbidity than those of their adult counter­parts, particularly in pediatric systemic lupus erythematosus (pSLE).^4,5 More severe disease often necessitates more aggressive immunosuppressive therapy, resulting in a challenging combination of disease-related damage, drug-related toxicities and decreased medication adherence during a period of development when AYAs are attempting to establish their own identities.^6,7

Second, we are not doing well. A recent study among publicly insured and uninsured AYAs with chronic rheumatic disease reports an average gap of 221 days between the last pediatric visit and the first adult visit. Unscheduled hospitalizations and emergency department (ED) visits occurred for over 25% and 50% of patients, respectively, and end-stage renal disease or death occurred in 15% of patients with rheumatic diseases after their last pediatric visit.⁸ All patients with end-stage renal disease and those who died also experienced prolonged gaps in care.

These findings parallel other multicenter cohort studies demonstrating increased pSLE-related mortality and readmissions during transition age.^9,10

Although structured healthcare transition processes have been shown to improve outcomes, a 2018 Childhood Arthritis and Rheumatology Research Alliance survey found only 37% of U.S. and Canadian pediatric and medicine-pediatric rheumatology providers consistently address healthcare transition with their patients.^11,12

Third, emotional vulnerability of patients, families and providers is unavoidable during the transition from pediatric to adult care. Brené Brown, professor of social work at the University of Houston, describes vulnerability as “uncertainty, risk and emotional exposure.” And after successfully achieving remission in a patient with pSLE with a high disease burden and complex social situation, pediatric providers and patients alike experience this vulnerability as uncertainty in care continuity, risk of disease flare and an underrecognized emotional exposure after years of a stable relationship with one pediatric provider.

Parents carry a similarly challenging emotional burden, transitioning from a managerial role as their child’s medical decision maker to a consultant role, in which they relinquish a significant amount of control of their child’s medical care.

Acknowledging these emotions can help us come together as a healthcare team to best support not only our patients, but also each other, as we tackle a difficult but important problem.