Pediatric to Adult Care Transition Challenging for Patients with JIA

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Dr. Sheffield is an adult rheumatologist who received the following referral request from a family doctor: “Please see this 22-year-old male with a history of juvenile arthritis for ongoing care. I have only seen him once, and have no previous medical records.”

Dr. Sheffield meets with Paul, who reports that he has had arthritis since he was a young boy. He used a lot of different medicines, but isn’t sure of their names; his mother is in the waiting room and can provide details. He’s pretty sure he was referred to an adult rheumatologist when he turned 18, but he lost the doctor’s name and number, he was never called about an appointment, and things got busy at work and school. He hasn’t taken medicine for the past few years, because they’re really expensive, and he’s been feeling pretty good. Over the past few months, it’s gotten harder to walk, bend and climb stairs, so his mother got him into a family doctor, who sent him here.

Transitioning from the pediatric to adult healthcare system can present young patients with significant hurdles. The above vignette highlights some of the issues that may arise. This article focuses on transitional care in patients with juvenile idiopathic arthritis (JIA). It discusses some of the challenges for patients, families and healthcare providers (HCPs), and outlines some of the initiatives developed to address these challenges.

Definition of Transition

Transition is defined as “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented healthcare systems.”¹ It’s not an event that occurs at one point in time (e.g., transfer); it’s a gradual process that requires the acquisition of different skills from adolescence into the mid-20s, with the attainment of skills likely occurring in parallel with maturation of the frontal lobes.²

Transition Challenges for Youth & Parents

There is evidence that failure to transition successfully can adversely affect long-term health outcomes.³ A Canadian study showed that 52% of JIA patients had an unsuccessful transfer to, and/or sustained follow-up with, an adult rheumatologist.⁴ Depending on the location, institution and local administrative policies, youth are typically transferred to adult HCPs between the ages of 16 and 22. This is a particularly vulnerable time for youth. They are often preoccupied by body image, family, peer and sexual relationships, school and recreational activities. Health concerns are frequently relegated to the back burner, particularly if parents have assumed a managerial role for medical care. Youth may engage in high-risk behaviors that further contribute to poor transition outcomes. Studies show a high incidence of poor adherence, inadequate knowledge about disease and treatments, and poor advocacy skills at the time of transfer.⁵