Transitioning from pediatric to adult care is an important step when you’re living with a rare kidney disease. You may start taking on more responsibility for appointments, medications, and decisions about your health. Knowing what to expect can make the change feel more manageable.

After all, a smooth transition can help ensure care continues without interruptions and that appointments aren’t missed. Transitioning well may also help prevent complications and support kidney health.

If your teen’s preparing to move from a pediatric care team to an adult care team, there are steps you can take to make this transition as seamless as possible. Here’s what you need to know about this important change and how to navigate it.

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Managing appointments and medications

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What To Know About the Transition From Pediatric to Adult Care

Transitioning from pediatric care to adult care is ideally a gradual process where the responsibilities for managing your child’s rare kidney disease shift from a pediatric model, where you or another caregiver takes the lead, to an adult model, where your child takes on more responsibility.

With an adult model, your child will play a more active role in managing their condition. And, if the transition takes place gradually, they’ll have time to gain a deeper understanding of their ongoing needs and learn how to communicate effectively with healthcare providers.

Of course, the thought of your child taking on these responsibilities may feel overwhelming or cause uncertainty about how to support them. But you can alleviate some of this stress and anxiety with ongoing communication and support.

This way, everyone knows what is changing, has time to make adjustments, and can become comfortable with the transition. Starting early also gives your child the time and the space to build their self-confidence — and their independence.

What Age Should the Transition Start?

When it comes to switching from a pediatric care team to an adult care team, it’s best to start preparing for the move early. In fact, many doctors suggest starting as early as age 11 by giving your child more independence. But the exact age this process begins will vary.

During this early phase, the goal is to build your child’s awareness of their illness and encourage them to take a more active role in their care. For instance, they may start asking questions at appointments, learn how to get medication refills, and add upcoming visits to their calendars.

By the time they’re 18, they should be actively looking for adult-oriented healthcare providers, managing basic insurance questions, and coordinating the transition of their medical records from the pediatric physician to adult care.

Once they’re over 25, they should be fully transitioned to adult care and coordinating most aspects of their care on their own. This means they are scheduling their appointments, managing their lab draws, handling insurance issues, and sticking to their treatment plan.

How Pediatric and Adult Kidney Care Differ

One of the biggest changes when transitioning to adult care may be realizing how different the two care models are. From the amount of time healthcare providers spend with each person to the overall approach to care, the differences can sometimes be significant.

Neither model is necessarily better — they simply serve different needs. Pediatric and adult care may differ in several ways, although every doctor, clinic, and hospital is different.

Why the Transition Can Be Challenging

As your teen moves from pediatric care to adult care, they can face challenges along the way that make the transition difficult. For instance, they may continue to rely heavily on you or another caregiver or not fully understand their condition and the risks involved.

They may also struggle emotionally and socially. After all, having a rare kidney disease can be frustrating, especially because your teen’s life may not resemble others their age. This can bring up a range of emotions as they better understand their condition.

As a result, your teen may experience a wide range of emotions. For instance, they may feel angry, sad, anxious, or frustrated. They may also get tired of managing their kidney disease and feel too embarrassed to ask for help.

To further complicate matters, most young people move to adult care during a time when many parts of their lives are changing. Their brains are still growing and developing, too.

And while they may want to be more independent, they may still need help building their self-management skills.

In other words, teens and young people may forget to take their medicines or keep their appointments, or they may not realize the risks of certain behaviors. Health experts say these aren’t signs that the transition to adult care is failing but instead show that they need more help and support.

Join the Conversation

On MyKidneyDiseaseTeam, people share their experiences with kidney disease, get advice, and find support from others who understand.

What tips do you have for transitioning from pediatric care to adult care with a rare kidney disease? Let others know in the comments below.