Growing Up and Moving On — Transition of Care for Patients with Childhood-onset Rheumatic Disease

Abstract

Transition, as defined by the Society of Adolescent Health and Medicine, is the “purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented healthcare systems”1. Included in this group is the growing population of adolescents and young adults with childhood-onset rheumatic conditions, such as juvenile idiopathic arthritis (JIA) and systemic lupus erythematosus (SLE), as well as several other less common chronic inflammatory conditions. Recent longterm outcome studies have demonstrated that the majority of children with JIA continue to have active disease into adulthood, dispelling the notion that children can “outgrow” JIA2,3. Similarly, newer literature suggests that patients with childhood-onset SLE are likely to require treatment into adulthood, and are at significant risk for early morbidity and mortality in young adulthood4,5,6. These findings highlight the importance of ensuring that our patients transition successfully from pediatric to adult care, and that this transition is seamless without disruptions in treatment or planned followup. Fractured transition has the potential to lead to poor healthcare outcomes and increased healthcare system costs7,8,9. Studies examining transition in pediatric rheumatology and other chronic childhood diseases suggest that significant barriers exist with the current healthcare transition process. Using data from the National Survey of Children with Special Health Care Needs, Scal, et al reported on the proportion of adolescents with arthritis who received transition counseling. They determined that only half of young people had had a discussion with their provider about how their … Address correspondence to Dr. Hersh, Department of Pediatrics, University of Utah’s Primary Children’s Medical Center, 295 Chipeta Way, Salt Lake City, Utah 84103, USA. E-mail: aimee.hersh{at}hsc.utah.edu