Transitioning from Pediatric Care to Adult Care: What to expect and what questions to ask

Jessica Markowitz, Ph.D., studies how to make the transition from pediatric to adult diabetes care as smoothly as possible

Transitioning from pediatric diabetes care to adult diabetes care is life changing. What if I don’t like my new provider? Will I have to do things differently? I like the team I have now, why do I have to change? All of these thoughts have probably run through your head, and they’re all valid.

Making a big change in your life can be taxing, especially when it has to do with your health. You probably have a lot of questions, and you don’t know what to expect for the future. But just think, you’re not the first person to make this transition, and your team of providers is there to help you every step of the way.

“We don’t have a specific age we transition kids to the adult clinic,” said Jessica Markowitz Ph.D, Clinical Psychologist and Research Associate at Joslin Diabetes Center. Markowitz recently received a Career Development (K23) Award from NIDDK to study the process of preparing pediatric patients to transition from pediatric to adult care.  “One of the things I’m looking into now is how to best prepare kids to transfer to adult care, and what age we should start talking about it. It’s very tough because it’s different for every family,” she said.

Talking to your pediatric team is the best thing you can do. Preparing for the changes that are about to come is key for a successful transition. If you are on medication, start monitoring it on your own, take charge of your diet, and know what it feels like to deal with your diabetes.

“In pediatrics as kids get older they usually start seeing their medical providers without their parents for part of the appointment, and then once they are 18 it’s their choice whether they want their parents to stay involved with their care,” said Markowitz.

Often times the transition from pediatric care to adult care comes when young adults are starting to live on their own. Whether it’s college or moving out, this might be the first time you’d be handling your diabetes on their own. Expect to transition from pediatric to adult care anywhere between ages 18-25.

If you decide to go to college, the transition typically won’t happen until after you graduate. “There are two different models- sometimes kids will chose to get their diabetes care where they’re going to college, or, they’ll chose to continue their diabetes care here (or with their current provider) because they come home often enough during school breaks that they’re able to continue their care here. So there are different ways of doing it,” said Markowitz.

Prepare yourself for this next step in your life. If your parents are in charge of your medicine, ask them questions about the dosage and how to do it on your own. Go one week where you are completely in charge of your care and see what your strengths and weaknesses are. Talk with your provider before you take on this responsibility so they can give you tips for success.

Additionally, you will be switching providers. This can be the most challenging part of the transition from pediatric to adult care. You’ve likely been with your pediatric team for years and have formed a bond with them that you don’t want to give up. It’s challenging, and there is no set of rules to make it easier.

“I think the biggest barrier is just the change, from one place to another and specifically leaving their pediatric providers.[Here at Joslin] I think it’s hard to leave Louise and Stephanie who answer the phone and coordinate visits. Louise has been here for over 20 years and knows everyone and everyone knows her, so that’s a piece of it,” said Markowitz.

Joslin has programs in place to make the transition as smooth as possible. “In pediatrics we have an adult doctor, Allison Cohen, who works in adult, pregnancy and pediatrics, and she sees patients once a week here in pediatrics. Many of our young adult patients will transition from their pediatric endocrinologist to Dr. Cohen, but they’ll keep their pediatric nurse for a while until Dr. Cohen feels they are ready to transition. Then she can recommend a provider for them that would be a good fit on the adult side, and I think that that’s really helpful since they now know Dr. Cohen and are comfortable with her recommendation,” said Markowitz.

The adult side of Joslin is much bigger than pediatrics. The adult clinic sees roughly 25,000 patients per year whereas pediatrics sees roughly 2,500, giving it a much different feel. The adult team at Joslin has recently created a Transition Program to help young adults make and keep their appointments. This makes it easier for patients to stay on track with their visits.

Before you make the transition there are some things you should think about and talk about with your current provider. Some questions to ask might be-

  • How will my care change?
  • If I have a question or concern, who should I talk to?
  • Can I still contact you, my pediatric team?
  • What will I have to do differently once I transfer to adult care?

There is a lot to think about when transitioning from pediatric care to adult care. It’s important to remember that you have a team of professionals at your fingertips ready to help you at any time. Take advantage of the resources you have and prepare yourself for the transfer, so when the day does come you’ll be ready to take on the challenge.

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