Pediatric Rheumatology Research Highlights Successful Approaches to Manage Juvenile Rheumatic Diseases

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WASHINGTON, D.C.—Patients with juvenile rheumatic diseases are thriving in an era of highly effective therapies, successful self-management strategies, better understanding of genetic links to autoimmunity risk and improved efforts to listen to and engage with these young patients.

That bright picture for young people with arthritis was presented by pediatrics at the ACR/ARHP Concurrent Abstract Session on Nov. 16 at the 2016 ACR/ARHP Annual Meeting, where they shared their newly published findings.

Smoothing Transition

Young adults with arthritis are more confident about self-management and less likely to drop out of care after transition if they receive proper education and support, according to a new study evaluating a clinical transition pathway for young adults with autoimmune diseases at Erasmus MC Rheumatology in Rotterdam, Netherlands.¹

The researchers tested the effectiveness of their program, which includes an education coordinator to work with patients from 12–18. Prior to developing the program in 2008, they found that 25–52% of patients dropped out of care after transition, said Margot J. Walter, NP, a nurse practitioner and lead author of the study.

From 154 electronic medical records, the researchers found that about 10% of patients who had completed the program had dropped out of the clinic three years after transition. Based on 77 questionnaires completed after transition, patients also reported high scores on standard satisfaction and self-efficacy measures, said Ms. Walter.

These high scores suggest that “young people were confident” about managing their own care as adults, she said. “Transition is a phase, not a one-time event. We cannot ignore this important period of care.”

Heart & Lung Health

Cardiorespiratory fitness in patients with juvenile idiopathic arthritis (JIA) who have access to biologic drugs is comparable to that of their healthy peers, according to a new study by researchers at Oslo University Hospital in Norway.² All JIA patients in their clinic are referred to physical therapy after diagnosis and encouraged to engage in physical activity, said Kristine Risum, PT, MSc, a lead author of the study.

In 2015, the researchers compared cardiorespiratory fitness levels in 59 JIA patients and 59 healthy controls, both with a mean age of 13.5 years. The JIA patients’ mean disease duration was 7.5 years, and most had used biologics. Fitness was measured as peak oxygen uptake levels during a continuous, graded treadmill test until exhaustion, and heart rate at beats per minute.

The JIA patients scored a mean of 45.1 and the healthy controls scored a mean of 46.5 on the VO2 peak (mL/kg/minute) lung fitness test. JIA patients scored a mean of 196 beats per minute and healthy controls a mean of 197 on the heart rate test. Results suggest that there is no significant difference in heart or lung fitness between JIA patients and healthy controls in the era of biologic treatment, said Risum.

Rethinking ACR Pediatric 30

Developed in 1997, the ACR Pediatric 30 Core Set is the existing tool pediatric rheumatologists use to measure disease activity and evaluate clinical trial efficacy in juvenile idiopathic arthritis (JIA). To contribute to a discussion on updating the core set to incorporate current outcomes expectations and patient-centered domains, one new study took a qualitative approach to better understand the experience and priorities of JIA patients and their caregivers.³