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Research & Registry

2016

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July 15, 2016

Editor’s note: The previous edition of the CARRA newsletter incorrectly identified the authors of the publication The Systemic Juvenile Idiopathic Arthritis Cohort of the Childhood Arthritis and Rheumatology Research Alliance Registry: 2010–2013. The corrected authors listing is as follows: CARRA members Ginger Janow, Laura Schanberg, Betsy Mellins, Yuki Kimura, and Rayfel Schneider, along with Soko Setoguchi and Vic Hasselblad.

First author Ginger Janow, MD, commented, “An important take-away from the paper is that our systemic JIA patients are doing well overall with low morbidity. However, pockets of more severe disease appear to exist, particularly amongst African American patients and those whose arthritis persists even though their systemic symptoms have resolved.”

The authors conclude that future research will need to assess these groups more closely. Practice patterns in the choice of biologic agents appeared to change during the study period. There appeared to be a shift away from TNF-alpha inhibitor use and an increase in the use of IL-1 and IL-6 inhibitors. The new CARRA Registry is collecting more detailed information such as medication doses (specifically steroids) and start/stop dates to further define trends in treatment and outcomes.

June 3, 2016

White, P. H., & Ardoin, S. (2015). Transitioning Wisely: Improving the connection from pediatric to adult health care. Arthritis & Rheumatology.

About the authors: Stacy Ardoin, MD, is Interim Chief of Rheumatology at Nationwide Children’s Hospital and a member of the CARRA Steering Committee. Dr. Ardoin is board-certified in both adult and pediatric rheumatology. She sees pediatric patients at Nationwide Children’s Hospital and adult patients in the Ohio State University Rheumatology Clinic and in the Ohio State University Lupus Clinic, where she provides care to patients with lupus, vasculitis, rheumatoid arthritis, scleroderma, myositis and other rheumatologic conditions. Patience White, MD, a CARRA member, is an adult and pediatric rheumatologist in Washington, DC, who for over 20 years has been involved in transition issues for children with disabilities.

Overview: Young people with rheumatic and other chronic diseases often face a challenging transition from pediatric to adult health care. White and Ardoin’s paper examines recent literature about the transition to adult care for youth with rheumatic conditions. The authors focus on the resources needed for providers to help smooth the transition process in pediatric and adult primary and specialty care settings.

Data show that many families are unprepared for the challenges associated with the transition. Families have reported that they often experience a lack of support and guidance. Providers also report a lack of satisfaction with available transitional resources and are interested in finding effective ways to support their young adult patients through this transition. Without support, young adults may suffer from lower care quality or increased health care costs. Factors involved in the lack of support include individual patient factors, such as limited self-management and self-advocacy skills or lack of family support, and system factors related to insurance coverage, communication gaps between health providers and health systems, and lack of provider education about transition and access to care.

The paper recommends transition tools for both pediatric and adult rheumatologists. The authors suggest that better transition preparation, health care transfer, and integration into adult health care is possible.