Pediatric Kidney Disease

Growing into adulthood is an exciting time in a young adult’s life! It’s a time full of new experiences, meeting new people, and personal growth. However, if the young adult has kidney disease or other chronic medical problems it can be a stressful time. It requires them to leave the doctors with whom they have had long-term relationships and doctor’s offices that are geared to the pediatric population. Indeed, even the waiting room of the new doctor’s office will seem very different - full of all adults, including many elderly adults.

This stage in life involves a shift of responsibility from parents to the new adult patient. This can be stressful for the patient who may not feel ready to take on these responsibilities and for the parents who may not be ready to let go control. Of course, this transition is happening in many areas of the young adult’s life and for most patients this goes smoothly for both the parents and the patient. In the healthcare setting, the young adult is now responsible for making their own appointments, refilling their medications, and remembering to take their medications on time. A successful transition in responsibility is important because research has shown that when this transition period goes poorly there is increased risk of having worse health outcomes in adulthood. The good news is that with some planning and preparation it can go smoothly and easily, allowing for a happier, healthier adulthood!

The transition process should be personalized for each patient’s own needs. Typically the transition occurs between 18 and 21 years of age. When the young adult reaches this age milestone, they obtain much more responsibility over their healthcare including: whether or not to accept medical treatment, how much they want their parents involved in their medical decisions, and how to meet medical costs not covered by insurance.

The planning for transition should start much sooner with some groups advocating that it begin as early as the age of 12 with a gradual transfer of the medical responsibilities.

The planning stage of healthcare transitioning is meant to make the changes that occur when the patient turn 18 years old easier since they allow for gradual change. The first step of planning is to discuss with the pediatric nephrologist when they typically transition patients to adult clinics. This can help create the timeline over which one needs to become prepared for the transition. At the time of transition, it is important the young adult has a good understanding of their medical condition.

Questions they should be prepared to be able to answer are:

What are my medical conditions and what medical procedures have I had in the past?

What medications do I take and how do I take them?

How do I refill my medications?

Who are my doctors? What do I see each of them for? How do I schedule appointments with them?

Do I have any dietary restrictions?

Do I have any allergies to medications, foods, or other things in the environment?

What medical problems run in my family?

What type of insurance do I have? Does my insurance change now that I’m 18? Where should I keep my insurance card? Do I have a separate card for prescription drug benefits?

What do I do if I have a medical emergency?

What symptoms should prompt me to call the doctor’s office?

Young adults should work with their parents and the pediatric nephrologist over the planning stage to learn how to answer these questions. The young adult should have a written or electronic record of all the answers to the questions above and as many of their medical records as possible to help facilitate the transition.

 

In addition, over the planning stage, it is vital for young adults to work with their parents to start to share the responsibility of their healthcare.

This process doesn’t happen overnight. Some of the ways you the young adult can start to share responsibility include:

  • Taking your medications on your own without being reminded. Requesting a refill of your medication and picking up the refill at the pharmacy.
  • Scheduling your own appointments and tracking them on your calendar.
  • Checking in at your own appointments.
  • Asking questions at doctor’s visits and eventually taking the lead on discussions with your healthcare team.
  • Practice filing claims with your insurance and discussing expenses with your parents.
  • Collecting and keeping track of your medical records.

Selecting the adult nephrologist to whom the care is going to be transferred is an important part of the transition. This process should start at least several months before the anticipated first visit with the new adult nephrologist. The pediatric nephrologist can help with this by making recommendations based upon their knowledge of your specific type of kidney disease and on which adult nephrologist would be a good fit. The relationship between the adult nephrologist and the patient will be an important one, just as the pediatric nephrologist’s relationship with the patient and the parents was before. Things to consider are the specialties of the adult nephrologist, the location of their office, and insurance types accepted. Recommendations from other patients that have recently transitioned from pediatric to adult care can be helpful as well. It is important to ask the pediatric nephrologist to send records to the future adult nephrologist to help ease the transition as well as provide a copy for the patient to have and review as well.

There are a few things that the new adult patient can do to make their first visit go well. They should make sure to bring a list of current medications and medical conditions. They should be ready to answer questions about their past medical care and families medical history. They should be aware that the adult nephrologist’s office will expect the young adult to be more independent and may seem to provide fewer support services. They should also come ready to ask questions. It is a good idea to write down and bring a list of all the questions they have for their new adult nephrologist. Some questions to consider asking are:

  • What is the best way to communicate with the doctor’s office? How long should it take to receive a response? Is there an after-hours number to call if I experience issues after hours or on weekends?
  • What services (blood work, x-rays) are available at the doctor’s office?
  • What should I bring to each appointment?
  • How do I request a new prescription for my medications when I am out of refills?
  • How do I change appointments if something comes up?

Congratulations on reaching this important milestone. With a little planning and preparation the transition can be a smooth process that doesn’t undermine this exciting time in your life!