Transitioning to Adult Rheumatology Care  

By Dr. Peter Chiraseveenuprapund and Dr. Kristine Carandang | September 2024 

In the United States, around 300,000 children aged 17 or younger live with juvenile rheumatic conditions. Although they make up a small percentage of the millions of individuals with rheumatic disease, these young individuals face unique challenges as they transition into adult care. How can rheumatologists best support them as they enter adulthood? 

Defining Transition 

In the medical field, the term “transition” often refers to gaining independence and becoming self-sufficient in managing healthcare. Within this process, healthcare providers typically focus on specific, measurable outcomes that indicate the successful transfer from pediatric to adult care. 

Despite the long-standing concept of transition, the outcomes of those transitioning to adult care remain poor. Long-term data indicates that patients with juvenile idiopathic arthritis (JIA) continue to experience disease activity, pain and ongoing medication use even with the introduction of newer biologic agents. Also, young people with childhood-onset lupus often have more severe health issues and damage compared to adults, and the transfer of care is associated with reduced healthcare utilization and irregular follow-up appointments. 

Therefore, the transition is more than just switching to an adult healthcare provider for these patients. Patients want to learn how to manage their rheumatic condition by themselves, especially as they reach milestones typical of their age group, such as getting a driver's license, exploring college life, employment, financial responsibility and pursuing romantic relationships.  

In our mixed methods study, a majority of young patients expressed a preference for learning transition skills, such as filling medication prescriptions, discussing their medical history and tracking symptoms, from their rheumatology healthcare teams. However, in reality, they learned these skills from their parents. It's worth noting that while 95% were comfortable speaking to their rheumatologist about their symptoms, only 47% and 59% were comfortable discussing how their rheumatic disease affects sexual/reproductive health and mental health, respectively, with their rheumatologist. When it comes to young people, health and wellness should be viewed from a holistic perspective. Therefore, the transition should ideally integrate and align with routine tasks and life goals to achieve overall well-being, which, in turn, can facilitate continued long-term engagement with healthcare. 

Supporting Health Management in Early Adulthood 

Open communication and trust-building are essential elements of transition preparation throughout the entire process, from pediatric to adult healthcare. It is crucial to clearly and explicitly identify which aspects of care are related to the transition and how they support patients' independence within and outside the clinic. For example, the ‘Got Transition’ program developed by The National Alliance to Advance Adolescent Health provides guidance for physicians, patients and families to collaboratively approach the transition process systematically. The program includes components such as establishing a timeline and expectations, assessing readiness for self-care, monitoring patients' progress, preparing them for the differences between pediatric and adult clinics, preparing them for the process of transfer and, finally, transfer completion. According to our focus groups, young patients unanimously agreed that using the resources and format found on the Got Transition website would have improved their transition experience. 

Continuing to Improve Patient Engagement  

In many cases, pediatric rheumatology bears most of the responsibility in preparing young individuals to transition to adulthood. However, adult rheumatologists also play a critical role in ensuring a successful transition; some patients may need more assistance in developing independent self-care skills. Similar to adults with rheumatic diseases, adolescents and young adults are committed to achieving positive outcomes and want to be actively involved in shared decision-making for new treatments. Toward the end stages of transition, treatment and disease-management goals need to be carefully established by the young adult and their rheumatologist when transitioning to adult care.  

We propose that proper implementation of transition care ultimately involves providing patient-centric care, which incorporates holistic measures focusing on participation and longer-term life events, such as fertility and family planning, emotional well-being, coping and financial status. 

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Arthritis Foundation Resources 

The Arthritis Foundation has several resources that can help in the transition to adult rheumatology care, including Connect Groups, the JA Summit, the Mentorship Programs and the Junior Ambassador Program. Learn more about the Foundation’s JA program and resources.  

Transition Tips for Rheumatologists 

• Empower your young adult patient to feel inspired by the transition. Emphasize the importance of having more control and decision-making in creating a treatment plan that matches their lifestyle. 
• Delineate skills and knowledge needed to promote health maintenance. Provide time and resources for your young adult patient to build confidence in these skills in the clinic (for example, a list of questions to ask during a visit).  
• Allow parents to support the process (e.g., through coaching) but speak directly to your young adult patient. Set boundaries for where parents' authority ends and your young adult patient's autonomy begins.