Type 1 Diabetes Continuum of Care

If you have a child with Type 1 diabetes, you want more than anything to keep them healthy in body, mind and spirit. To help you and your child prepare for the inevitable transition of health care that happens between childhood/adolescence and the beginning of young adulthood, we’re here to highlight what you should know about the continuum of diabetes care. That way, the transition will be as smooth as can be.

Specialists who care for diabetes patients are called endocrinologists. The transition to adult endocrinology is usually between 18 and 21 years of age because pediatric endocrinologists aren’t certified to care for patients past age 21. AdventHealth and AdventHealth for Children offer endocrinologists and specialty care for all ages to make this transition easier for your family.

Common Emotions During the Time of Transition

Transitioning can be a scary and uncertain time for parents and young adults. Pediatric diabetes patients have been with their providers for most of their lives, depending on the age of diagnosis, and they may be attached to their care team.

Establishing care with a new provider while also facing the challenges of transitioning to adulthood with a chronic illness can be overwhelming. That’s why at AdventHealth for Children, we focus on empowering our patients to look into the transition process by age 16 to 17 so they’re better prepared.

It’s best to talk about short- and long-term goals at each visit so you and your child know how to prepare for current stages and for the future.

Our Approach to Caring for Adolescents With Type 1 Diabetes

When it comes to caring for teens, we want to make sure they’re involved in the decision-making. By age 13 to 14, patients are independent thinkers. They are encouraged to understand the “why” behind their care and make sure they agree and are on board [BA1] with the goals and therapies in place.

What Children With Type 1 Diabetes Should Expect When Transitioning Care

After 18 years of age, parents are no longer able to access their child’s medical information without their consent due to HIPAA regulations. The patient can complete a consent form that allows certain people, including their parents, to receive updates regarding medical records.

At that time, your child will need to know their insurance plan, the duration of coverage and a list of primary care providers (PCP) and adult endocrinologists that will accept their plan.

They will also need to know important information, such as insurance coverage for diabetes supplies, medications, regular follow-up appointments and labs.

It’s important to know which diabetes supplies are covered under Durable Medical Equipment (DME) or pharmacy benefits and the preferred DME company and pharmacies.

3 Steps During the Care Transition Period to Help Families Prepare

1. Know your insurance plan, the duration of coverage and primary care providers and adult endocrinologists that accept your plan. You can always call your insurance plan for this information. They can even send you a list of providers covered under the plan and who is close to your area.

2. Call your insurance provider to educate yourself on:

• Preferred medications (brands versus generic cost)
• Preferred diabetes supplies (insulin pumps, CGMs, meters, test strips, needles)
• Deductibles, out of pocket max, monthly premiums

3. Choose your preferred adult endocrinologist and call the office to find out if they are accepting new patients and their process for scheduling appointments. Ask what medical records are needed and if a referral is required. Find out their next available appointment. Make sure to let your current pediatric endocrinologist know this information and sign a medical release form so all records can be sent to the new provider when the time comes.

How Parents Can Work With [RK2] Their Children to Make the Transition Easier

As your child gets older, you can start slowly handing some responsibility over to them. Show them how to schedule the follow-up appointments and have them practice with supervision.

You can teach them when and how to call for refills on medications. Create a medication chart with a list of their medications, the date the medication was open and the date of the next refill. Make sure they know the names of their DME companies and pharmacies.

Encourage your child to call their provider when there are concerns about blood sugar levels or questions about medicines. Be present with your child to help guide them.

When searching for a new adult endocrinologist, make sure your child is a part of this conversation and that they help choose the provider. Since they will be 18 years old, they will have to contact the new provider, but it’s best for you to be present to help guide them in scheduling their new appointment and sending records as a practice run.

How We Can Support a Smooth Transition

A smooth transition in the continuum of diabetes care will prevent unwanted anxiety and uncertainty for your child while also keeping them healthy and safe. If the transition isn’t handled properly, there may be long periods between follow-up appointments. This is especially concerning since it could lead to gaps in medication refills, confusion on doses and variability in blood sugar levels. These factors could result in more severe events, such as diabetes ketoacidosis, seizures or hospitalizations.

But rest assured we’re here to bridge the gap for your family. As your child approaches this care milestone, we’ll provide a list of adult endocrinologists in our network so they can feel comfortable getting care in an environment that they’re used to. You’ll also be able to ensure that their new provider is in-network for insurance. We’ll connect with their new providers so that our team can start sharing their medical forms and background for a seamless transition.

Continuing Care Through Every Age and Stage

Life is sweet. Kids should be allowed to experience all the possibilities it holds. A diabetes diagnosis can cause a variety of complications in the life of your family. At AdventHealth for Children, we're here to support your child with the latest advances in diabetes treatments and to help your family navigate and manage this chronic condition. When your young adult is ready to make the transition to the next level of care, we can help with that, too, so they’re in good hands their whole lives through.

To learn more about our Pediatric Endocrinology program, visit us here to learn more about our care network.