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Growing up right: Transitioning from pediatric to adult rheumatology care

Author: Sangeeta Sule

As with all children, those with juvenile idiopathic arthritis eventually grow up and become adults. Continuing medical care from the pediatric to the adult world can be challenging, both for these young adults and their parents, but there are a number of excellent resources to help with this transition. The goal of these transition programs is to prepare young adults to take over the medical decision making that, up to this point, may have been shared by child and parent. Pediatric care is often child and family-centered, whereas adult care is often patient-centered.

The role of caregivers

In addition to the patient and family, the team of caregivers also has a role in transition. During the teenage years pediatric providers often encourage visits without parents, and self-management skills including methods to remember to take medicines. Before the official transfer from pediatric to adult care is final, patients and families can have a “get acquainted” visit with the adult provider that may help ease the transition process.

Key resources and top tips

Below, I have summarized my top tips for managing the transition process. I have also highlighted some key resources with more information on transition, and toolkits to help families and providers through this process. The most important thing to keep in mind is that transition is a process. Start early, involve the entire team, and stay motivated!

Top tips for managing the transition from pediatric to adult care

  • Start early (1 of 4)

    Pediatric providers should start introducing the topic of transition as early as age 12. The transition process takes place over many years as the child matures and is able to participate in health care decisions. The transition plan needs to include a transition time frame, including age of transition to adult practice.

  • Discuss regularly (2 of 4)

    Pediatric providers should have a timeline for transition. By age 16, transition readiness should be discussed with the patient and family. This includes educating patients on their disease and medications.

  • Plan (3 of 4)

    By age 18, there should be a plan in place for transition from pediatric to adult services. This should include scheduling appointments with adult providers while still under pediatric care to ensure there is continuous health coverage. The plan should also include provider names and phone numbers (such as pediatric rheumatologist, nephrologist, physical therapy, etc.).

  • Transfer (4 of 4)

    Providers can help by transferring when the patient is stable and creating a transfer package including medical summary, plan of care with transition, and pending actions. It is important that there is good communication between pediatric and adult practices including confirming the first adult appointment date and receipt of records.

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Key resources and toolkits on managing transition

  • Arthritis Foundation (1 of 4)

    This website ​​​​​​​is easy to navigate and designed for patients and providers. There is an extensive resource library that has excellent information about how to prepare for life in college with a chronic disease, as well as potential scholarship opportunities.

    The Transition Toolkit guides patients through the steps necessary for an independent doctor visit. This includes information about the disease and medications.

    The information is focused on transition in the USA.

  • American College of Rheumatology (ACR) (2 of 4)

    This website has examples of a transfer letter from pediatric to adult rheumatologists. There are medical summary plans for patients with juvenile arthritis and lupus. These plans can be carried by patients to each their visits and can be updated in real time. Importantly, the ACR website has information for adult rheumatologists about juvenile arthritis and lupus in children.

  • European League Against Rheumatism (EULAR) (3 of 4)

    This document focuses on care in Europe. The website nicely outlines EULAR recommendations for transition. These guidelines are geared towards providers, but patients could also understand the principles outlined.

  • Got Transition (4 of 4)

    This website is for all pediatric chronic disease, and not specific to rheumatology. The website focuses on provider education and outlines core elements of transition. These elements include transitioning youth to adult health care providers, transition to an adult approach to health care without changing providers, and integrating young adults into adult health care. There are tools available to assess the pediatric patient’s readiness for transition. There are also resources for policymakers and research. This website is focused on care in the USA.

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Sangeeta Sule

Sangeeta Sule is Chief of Rheumatology at Children’s National Medical Center and Associate Professor of Pediatrics at George Washington University School of Medicine and Health Sciences. Disclosures
 

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