Teenage patient with diabetesBirthdays for children and teenagers can be incredibly exciting. From the double-digit milestone to the sweet sixteen driving milestone, growing older can bring many new changes.

One change that children with diabetes might not be looking forward to is the transition from pediatric to adult care for either their Type 1 or Type 2 diabetes. Dual-trained adult and pediatric endocrinologist Sajal Patel, M.D., is looking to make the transition as smooth and stress-free as possible.

“Getting an ‘adult’ doctor to help manage diabetes can be intimidating for many patients and their caregivers, especially patients who might have a complex case of diabetes,” said Patel. “Not only is the patient reluctant to stop seeing a provider who has been with them since diagnosis, but parents are also worried to allow their child with diabetes to become more independent in their disease management– it can be a lot of change.”

Fortunately, the transition to adult diabetes care does not have to be daunting. She has put together a list of tips, best practices, and general information for pediatric patients with diabetes who might be close to aging out of pediatric care.

1. Transitioning a pediatric patient with diabetes to adult care typically begins around age 14 and continues through age 18.

While a patient with diabetes does not normally move to adult care until they are around age 18 or 19, the conversation around adult care for diabetes can begin when they are as young as 14. Generally, age 16 is the sweet spot for the conversations around switching to adult diabetes care to begin, since the patient is becoming more independent through driving on their own.

Patel says the idea is to start talking about the transition to adult care well before it happens so that the pediatric patient with diabetes and the family has had time to process and be prepared.

“The goal of moving into adult care for diabetes is to avoid an abrupt change,” said Patel. “We want to give our patients ample time to know what is up ahead, locate an adult provider, set up those appointments, and know that our team will ensure a smooth transition by handing off the patient to the new provider.”

Of course, Patel notes the ages are flexible. Sometimes conversations on transitioning to adult care for diabetes do not begin until a patient is older than 16, and a patient might stay until they are 20 or older in pediatric care. The discussion and timing of transition is based on multiple factors.

Some patients with diabetes and their families may wish to stay with a pediatric endocrinologist until the patient goes to college. Patel says there is not one right answer for every situation, and her team helps to equip the patient and family with as much information as possible.

“It’s ideal that a patient with diabetes has a solidified plan for diabetes management with an endocrinologist or primary care provider before going to college,” said Patel. “Some families may wait to establish care with a provider in the college town or may go ahead and establish care with a provider in the hometown.”

Dr. Sajal PatelDr. Sajal Patel2. Some pediatric diabetes care will include informal classes to prepare patients for living with diabetes as an adult

Patel and others at Children’s of Alabama (COA) Pediatric Endocrinology and Diabetes start in-appointment “classes” for pediatric patients when they turn 16.

Medical providers, nurses, and diabetes educators at COA teach patients with diabetes new experiences they will encounter when entering adulthood, such as:

  • How to drive with diabetes
  • How to work with a pharmacy to manage diabetes medications
  • How to make appointments with an adult care provider
  • How to talk with a school nurse/college health facility

At the end of the four informal teaching sessions, the pediatric patient will receive a list of adult providers across the state who treat diabetes. That way, if Birmingham is not local to the patient, there are other options for care providers. This list includes both endocrinologists and primary care doctors.

“Ultimately, we want to equip our patients with as much knowledge on how to navigate the healthcare system and their daily lives with diabetes as we can,” said Patel. “The more informed our patients are, the better decisions they will be able to make in their healthcare experience and beyond.”

3. UAB offers a STEP program for medically complex diabetes cases 

The Staging Transition for Every Patient (STEP) program helps young adults with complex and chronic health conditions move from pediatric care at Children’s of Alabama to adult care at UAB Medicine.

The goal of the program is to ensure that the patient has continuity of care while transitioning to an adult provider. While it is not needed for every child with diabetes, Patel says STEP helps to avoid any gap in care for patients who might have additional diseases, disabilities, or medications in addition to diabetes.

Patel says that it may take some time to find the right fit for the pediatric patient and their family in adult care, especially if the patient has any other medically complex or chronic diseases.

“We really want to have enough time to ensure that the patient with diabetes and their family are happy with their new care providers. We work with our patients to ensure the next provider can meet their needs fully,” says Patel. “The STEP Clinic allows us the time to make a connection with their new provider and ensure they have all of the information and records they need to provide optimal diabetes and other chronic illnesses care.”

4. Some patients may continue seeing an endocrinologist while others might treat their diabetes with a primary care doctor

In general, Patel says that it is easier to find an adult endocrinologist than a pediatric endocrinologist, which can be a sigh of relief for many families.

For more straightforward cases, Patel recommends those patients see a primary care provider. “It is a good idea to go ahead and have those conversations with your pediatrician when your child turns 16 to see if they have adult provider recommendations,” she states. For more medically complex cases that include diabetes complications, specialized medications/technology, or other concomitant diseases, Patel typically refers that patient to an adult endocrinologist.

5. The transition is not only a change for the child with diabetes, but also for their caregivers.

“When a child or teenager is moving into adult care, it can be easy to assume that just the child or teenager will be affected, when in fact, the shift affects the entire family and care unit,” said Patel. “Many parents have been used to calculating insulin doses and picking out plates, but now it starts to be the patient’s responsibility to do those things. It can be tough to give up that control and trust that your child will be able to manage their diabetes in manner that keeps them safe.”

Patel says that as a pediatric endocrinologist, it is her job to ensure that her patient and their entire care system is on board with a transition to adult diabetes care plan: from the timing of the shift to choosing the new provider to making appointments and more.

“It can also be sad for a pediatric provider to help transition their patient into adult care. Of course, we enjoy seeing our patients over the years and building close relationships,” said Patel “but, we know that the transition means they continue to have the best care for their diabetes. Teamwork and preparation amongst the medical team, patients, and their families is really the key to ensuring a warm sendoff from pediatric care to adult care for diabetes.”