Transitioning from child to adult chronic kidney disease (CKD) care

The transition from pediatric to adult care is a process that begins in adolescence and ends when the person is fully integrated into adult care. These are the steps that a child (and their family) takes to prepare to be in charge of their own health.

The transition process looks different for everyone, but the steps often include:

Introducing the idea

 At about 12 to 14 years old, a child’s parents or caregivers and their care team introduce the idea that they will one day be responsible for their own care. When this takes place may depend less on a child’s age and more on their abilities, when they were diagnosed, and if their condition is stable. 

Allowing practice

Over time, children and teens can practice small parts of their care. They do not need to do everything alone. Practice can happen slowly, with help from family and the care team.

Here are some ways teens can practice:

• Make an appointment with help from a parent or caregiver
• Refill a prescription
• Ask their doctor questions during a visit
• Describe their kidney disease, symptoms, and health history
• Make a list of their current medicines and why they take them
• Use a pillbox, calendar, or phone reminder for medicines and appointments
• Learn how to access their medical records
• Know what to do in an emergency

Here are some ways parents or caregivers can help their children prepare:

• Let the teen answer questions first during part of the appointment
• Give the teen time alone with the doctor for part of the visit, when appropriate
• Practice calling the doctor’s office together
• Review medicines, allergies, and lab tests together
• Help the teen learn how to use the patient portal
• Talk about what the teen feels ready to manage and where they still need help.

What changes in adult care

Adult care may feel different from pediatric care. In pediatric care, parents or caregivers often manage appointments, medicines, insurance, and communication with the care team. In adult care, young adults are usually expected to take a more active role.

In adult care, a young adult may be expected to:

• Schedule and keep appointments
• Ask questions and explain symptoms
• Refill medicines before they run out
• Know which tests are needed and when to get them
• Use the patient portal or phone to contact the care team
• Understand basic insurance and medicine coverage
• Know when a parent or caregiver can still be involved

Age 18, becoming a legal adult

When a teenager turns 18, they become legally responsible for their medical decisions. Parents and caregivers can still support them, but the adult care team may need written permission before sharing health information with family members.

Families may want to ask the care team about:

• HIPAA forms or other permission forms that allow caregivers to speak with the care team
• Health insurance changes after age 18
• Medicine coverage and pharmacy benefits
• School, college, or work accommodations
• Disability benefits, if needed
• Medical power of attorney or supported decision-making, if the young adult needs help making decisions

Making a transition plan

A transition plan can help teens, young adults, families, and care teams prepare for adult care. The plan should include what the young person already knows, what they need to practice, who will help, and when the switch to adult care may happen. The plan can be updated over time as the young person becomes more comfortable managing their care.

A transition plan may include:

• The young person’s kidney diagnosis and CKD stage
• Current medicines, allergies, and pharmacy information
• Recent blood and urine test results
• Names and contact information for the pediatric and adult care teams
• What the young person can do independently now
• What they still need help with
• A plan for emergencies or urgent symptoms
• Insurance and permission forms needed after age 18

Making the switch

The switch to adult care should happen when the young person is ready and the adult care team is identified. A longer transition time can help young people feel more prepared to manage their care.

Here is a checklist teens and young adults can use to see how prepared they are:

• I ask my doctor questions about my health.
• I can tell my doctor if I do not understand something.
• I can describe my kidney disease, health history, and symptoms.
• I know who my adult care team will be, how to contact them, and how to make appointments.
• I know the names of my medicines, why I take them, and what to do if I miss a dose.
• I know how to refill my medicines before they run out.
• I know which blood, urine, or other tests I need and what they are for.
• I know how to get my medical records.
• I know what to do if I feel sick, have new symptoms, or need urgent help.
• I know how my parent, caregiver, or another trusted adult can help me if I need support.

Experts recommend that:

• Teens with stage 3 to 4 CKD should switch to an adult nephrologist, also called a kidney doctor.
• Teens with stage 1 to 2 CKD can switch to an adult primary care doctor. They may need a referral to a nephrologist if symptoms get worse or blood or urine tests show more kidney damage.
• Teens and young adults with kidney failure, dialysis, a kidney transplant, or complex medical needs may need a more detailed transition plan.