Growing Up With AiArthritis: Supporting the Transition From Pediatric to Adult Care

One of the most meaningful sessions from Day Three of the “Go With Us!” to Conferences program at EULAR 2025 focused on a topic that affects many families but is often overlooked: the transition from pediatric to adult rheumatology care. This shift is not just about changing doctors. It is about helping young people build the skills, confidence, and support they need to manage a lifelong condition during one of the most complex stages of life.

AiArthritis Health Education Manager Leila P.L. Valete covered this session, sharing her own experience transitioning from pediatric to adult care to add a personal touch. As a result, “Helping Teens Transition from Pediatric to Adult Autoimmune Care” brings together the patient voice and clinical expertise to explore why this transition can be so challenging and what actually helps.

Why the transition period is so vulnerable

Moving from pediatric to adult care often happens during adolescence or early adulthood, a time when life is already full of change. School transitions, new independence, social pressures, and identity development are all happening at once. Adding a chronic autoimmune or autoinflammatory arthritis disease into that mix can feel overwhelming.

In pediatric care, parents often manage appointments, medications, and decisions. In adult care, the expectation shifts overnight. Patients are suddenly responsible for scheduling visits, understanding insurance, tracking medications, and speaking up for themselves in medical settings. Without preparation, this change can lead to gaps in care and worsening health outcomes.

Adherence matters more than many people realize

A major focus of the session was adherence, which means following the full treatment plan as intended. This includes medications, lab work, imaging, physical or occupational therapy, and regular appointments.

Research shared at the session highlighted that nearly 40 percent of treatment outcomes are influenced by adherence. Even the most effective medication cannot work properly if it is not taken consistently or correctly.

Adolescence is a particularly high-risk period for non-adherence. Many young people skip doses, miss appointments, or stop treatments altogether. This often happens not because they don’t care, but because they want to feel normal, avoid side effects, or simply do not fully understand their treatment.

One of the most important takeaways was the need to gradually shift responsibility from parents to patients. This should be a process, not a sudden handoff.

Young people are more likely to adhere to treatment when they understand:

• The names of their medications
• Why they take each medication
• What happens if they miss doses
• How to monitor symptoms and side effects
• When and how to ask for help

Teaching these skills early helps patients feel more confident and less overwhelmed when they reach adulthood.

Transition should be a journey, not a jump

Healthcare teams can also support a successful transition by planning well in advance with their patients. Conversations about adult care should start early, not at the final pediatric visit.

Healthcare teams can support this by:

• Introducing transition planning years ahead of time
• Encouraging teens to speak directly during appointments
• Gradually involving patients in decision making
• Checking in about mental health, school stress, and social challenges

Honest conversations about preferences also matter. Some patients may do better with infusions rather than injections. Others may need help managing side effects or scheduling treatments around school or work. Personalizing care increases the likelihood that patients will stay engaged.

The session highlighted that quality of life issues are often missed during routine visits. Tools like HEADSS assessments and quality-of-life screenings can help identify challenges related to mental health, stress, relationships, and daily functioning.

Flexibility also matters. Offering virtual visits, evening appointments, or alternative scheduling options can make it easier for young adults to stay connected to care while managing school, jobs, or family responsibilities.

Healthcare providers have limited time with each patient. This is where patient organizations play a vital role. Support groups, educational resources, peer connections, and advocacy organizations help young people feel less alone and more empowered.

Connecting with organizations focused on arthritis and chronic illness can provide practical advice, emotional support, and reassurance that others have navigated this transition successfully.

AiArthritis can help patients and caregivers navigate every part of the disease journey, including transitioning from pediatric to adult care. To get started, visit the AiArthritis Patient Journey webpage and access tools and resources for every stage of your journey.