Transitioning from pediatric to adult kidney care

Why is transition of care planning important?

Moving from pediatric to adult care is an important step for teens and young adults living with kidney disease to support self-management skills. A smooth transition can help prevent health complications and support long-term kidney health. When a young person moves from a children's kidney doctor to an adult kidney doctor, they need additional support to stay on top of their care. If the transition doesn't go well, they may miss appointments, skip medicines, or lose touch with their care team, which can make kidney problems and other health conditions worse.

The key to a successful transition is preparation. Having conversations early on helps everyone understand what's changing and what skills children and teens need to practice. Many hospitals and clinics offer transition programs, which are structured services that guide teens and families step-by-step as they move into adult care. These programs may include readiness checklists, educational sessions or help with scheduling appointments. Even without formal transition programs, building these skills empowers young people to take more ownership of their health so they can move into adult care with confidence.

Research shows

• 50% of teens with CKD are not ready for adult care when the transfer happens.
• Only about 1 in 7 patients missed follow-ups in a structured pediatric to adult transition clinic, compared with 1 in 2 without structured support.

When does pediatric to adult transition start? 

Preparing for the transition early gives young people time to build confidence, understand what will change, and practice the skills needed for adult kidney care. Transition typically moves through phases, with different goals at each age.

Phase 1 (ages 11–17): Building awareness and early skills

This stage focuses on starting conversations and slowly involving children in their care. 

Early skills may include:

• Coming up with questions for appointments
• Learning how to schedule appointments and refill medicines
• Keeping track of appointments on a shared calendar
• Carrying their own insurance card and medicine list
• Helping create or update a simple medical summary (medicines, allergies)

Parents can also:

• Talk with the pediatrician about what the transition will look like
• Ask for recommendations
• Discuss how information will be shared between care teams
• Ask about transition programs that your health system might offer

Phase 2 (ages 18–25): Shared pediatric and adult care

As teens enter adulthood, they begin taking on more responsibility and may start meeting with an adult care team while still connected to their pediatric team. This stage is about gaining independence and building communication skills.

Key steps often include:

• Researching adult doctors (especially if moving or changing insurance)
• Meeting potential adult nephrologists or primary care doctors
• Writing questions or concerns for upcoming visits
• Updating the medical summary and sharing it with new doctors
• Making sure pediatric and adult doctors can communicate easily
• Calling the new clinic before the first visit to ask what information or documents to bring

Phase 3 (ages 26+): Independent adult care

At this stage, young adults are managing their own kidney care and making decisions with their adult providers. They schedule appointments, refill prescriptions, monitor symptoms, and stay engaged with their long-term health. This phase is about confidence, independence, and maintaining the habits that support long-term kidney health.

Shifting from pediatric to adult kidney care can feel exciting and a little stressful. You may be meeting new doctors, taking on more responsibility, or managing parts of your health that adults used to handle for you. Having a transition plan and staying involved can ease this stress and set you up for success.

Key takeaways

• Know the basics of your kidney condition and why your medicines matter
• Keep a simple medical summary with your medicines, history, and emergency contacts
• Practice scheduling appointments and refilling prescriptions
• Ask questions during visits and speak up when something feels unclear
• Stay connected with your care team if you feel overwhelmed or unsure

Practicing these skills creates a strong foundation and can make the first year of adult care easier to handle.

What is the role of the care team?

Care teams help guide you through this transition. Their job is to support you and make sure you have what you need to stay healthy and independent. 

Your care team may include:

• Nephrologist (kidney doctor), Nurse Practitioner, and/or Physician Assistant: Reviews your kidney health, explains your lab results, adjusts your medicines, and helps you build a long-term care plan. They will coordinate the transfer of your care, ensuring that the adult care team understands your medical history.
• Nurse: Helps you learn daily skills like managing medicines, tracking symptoms, and understanding treatment changes. They often answer practical questions, teach you how to manage your own care, and connect you with other team members.
• Social worker: Supports you with insurance, school or work issues, emotional stress, and connecting you to helpful programs. They can lead transition planning, help you and your family anticipate changes, guide you in identifying adult doctors and support you during and after the switch to adult care.
• Dietitian: Guides you on food choices that protect your kidneys. Your dietitian will help you understand how your nutrition needs may change and help you build kidney-healthy eating patterns for adult life.
• Care coordinator: Helps with scheduling, follow-up labs, referrals, and making sure information moves smoothly from your pediatric team to your adult team. Care coordinators play a key role in keeping everyone on the same page. They ensure that your medical history, medicines, and care plans are transferred correctly.

As your kidney needs change, you may meet new providers. For example, seeing dialysis care team more often if you are on dialysis or having different specialists check in depending on your CKD stage.

Questions to ask your new care team:

• Who do I contact if I have questions between visits?
• How often do I need appointments and labs?
• What symptoms should I watch for?
• How do I refill my prescriptions?
• Can you help me understand my health insurance?
• What can I do to get ready for adult care?

How to manage common transition challenges?

You may feel nervous about meeting new providers or dealing with insurance changes, and struggle to stay consistent with medicines and healthy routines as you become more independent. Encouraging open communication and check-ins with your care team can make the process easier.

• Prepare for different care expectations: Adult clinics use a model of care that is centered around the patient, not the family. This does not mean care is worse or less supportive. It means responsibility gradually shifts to the patient. In adult care, patients are expected to schedule follow-up visits, manage their medicines, and pay closer attention to symptoms. Providers still guide care and offer support, but they expect patients to take a more active role in day-to-day decisions and communication about their health.
• Expect a change in provider type: Patients with mild-to-moderate CKD may be transferred to an Adult Primary Care Provider (PCP) instead of an adult nephrologist.
• Be aware of insurance changes: There are two critical ages for potential insurance gaps: age 19 (when public coverage eligibility may end) and age 26 (when they are no longer eligible for coverage under a parent's plan). 

Questions you may want to ask the care team:

• Who manages communication between pediatric and adult providers?
• How often should my child be seen in the first year?
• What insurance changes should I plan for?
• How can I support medication consistency at home?

What resources and support are available?

Young people and their families don't have to navigate the transition alone. Many clinics offer transition programs that teach skills, explain next steps, and help young adults move smoothly into adult care. Social workers can help with insurance questions, school or work challenges, emotional support, and connecting you with helpful services in your community. Advocacy organizations focused on kidney health also offer guides, checklists, and educational tools for teens and young adults.

The Healthcare Shift initiative is a resource offering tools to prepare young adults, (age 10 to 26) to manage their own health, aiming to prevent the poor outcomes often seen when patients transition to adult care unprepared.

AKF Resources on pediatric to adult transition:

• Talking about growing up with a rare disease
• Video: Transitioning to adult care with pediatric lupus nephritis
• Guiding C3G patients through the transition from pediatric to adult care