Growing Up: Transitioning from Pediatric Diabetes Care to Adult Diabetes Care
Transitioning from pediatric diabetes care to adult diabetes care can sometimes be a big step.
Depending on insurance and/or Provider’s office, the transition from pediatric diabetes care to adult diabetes care usually occurs between ages 18 to 26 years of age. Some pediatric patients have been with the same pediatric endocrinologist since being diagnosed with diabetes. The transition can be stressful. The course of the pediatric endocrinologist and team of diabetes educators made up of nurses, dietitians and social workers/psychologist is to guide the pediatric patient in the next transition of life for the next step in managing life with diabetes. The transition from pediatric diabetes care to adult care includes learning how to manage blood glucose levels with multiple changes in life including changes in schedules and routines and learning how to make dosage adjustments to better manage blood glucose levels. For some, it may be learning to pay more attention to alerts from cgm device and others it may be the first time picking up insulin from the pharmacy or keeping track of how much pump/cgm supplies are on hand and the process of ordering supplies.
It’s not just about changing doctors. It includes changing routines, adjusting medications, taking on more responsibility, developing self-care skills, and a whole lot more. For young people and their families, knowing what to expect and what to prioritize can go a long way.
Let’s explore.
What Changes in Adult Diabetes Care?
When young people move into adult care, a few key things shift:
More independence. Pediatric clinics often talk mostly to parents depending on the age of the patient. Adult clinics talk directly to patients. The transition for the young adult will require to be more involved in the appointment with the Provider. Young adults are expected to now lead conversations, ask questions, and take an active role in decision-making. This also means for the young adult paying more attention to blood glucose levels.
Different appointment styles. Adult visits are usually shorter and more focused. The change in process can be a challenge especially if the parents of the young adult did all of the diabetes care. It is important to discuss with the Pediatric Provider when it is a good time to start having your child be more involved in care. As the parent, discuss with the team including the social worker or psychologist as to what they identify, as doable for your child to take on. Adult doctors may not spend as much time reviewing every detail unless the patient brings it up. Some pediatric endocrinology programs actually provide a “Transition to Adult practice” in a class format. Organizations that have a pediatric and adult endocrinology practice often will allow for an Introduction appointment to the adult endocrinology clinic.
New care team setup. Adult clinics may not include as many built-in support roles as child life specialists – a healthcare professional who ensures a child’s needs are being met in a medical setting – or school care coordinators. Patients may need to ask for referrals to educators, dietitians, or mental health support professionals. As a young adult who may be going on to college or training programs, you need to know your rights under the American Disability Act. These rights allow you to manage living with diabetes and still completing school or training goals.
Insurance and scheduling changes. Families will shift from school forms and parent-led calendars to insurance approvals, prescription timing, and clinic coordination led by the young adult. If attending ongoing schooling it is important they are aware of medical needs with living with diabetes. As living with diabetes may require immediate medical attention, having a cell phone during class/exams or extra time taking exams. The adult endocrinologist will help complete needed forms. Learning to keep track of medication on hand and when to get refills or updated prescriptions can be a whole new world. Learning to advocate for yourself and ask questions regarding medication changes or technology takes time.
How to Prepare as a Family
You can start preparing for adult diabetes care long before the first visit. For instance, between ages 11 and 13, begin shifting simple diabetes tasks from parent to child. What can seem like a simple task for one child can feel like a lot to another. Plan a discussion to have with your child and endocrinologist. Everyone has their own journey living with diabetes. Do not compare your child’s level of self-diabetes care to another but direct concerns to the pediatric endocrinologist or social work/psychology team.
Families can also create a care binder or digital folder with key details like clinic history, medications, supplies, recent labs, emergency plans, glucose patterns, pharmacy data, and insurance information. One great tip is practicing clinic style conversations at home. Many clinics begin formal transition planning between ages 16 and 18, so it’s smart to check in with your pediatric provider early to understand the exact timing and process. Some pediatric endocrinologist may see a patient until they graduate from high school and others may see young adult until they complete college. Insurances do play a part, as well. Some insurance expect a pediatric endocrinologist with complete support services/team until patient’s 21st birthday. Always confirm with insurance requirements.
Skills for the Young Person to Prepare and Build On
By the time a child enters adult care, they should feel comfortable with the basics of managing diabetes. Parents can help by coaching instead of doing. It will be an adjustment, but a helpful and necessary one for the long game. Some examples include:
- Checking glucose without reminders and understanding the numbers
- Administering insulin or using a pump correctly
- Refilling prescriptions or requesting supplies on time
- Carb awareness and portion planning for meals and snacks
- Knowing what to do during illness, stress, or exercise
- Responding to lows and highs safely
- Sharing CGM alerts with family/friends can be helpful back up
What to Expect with Behavior and Emotions
The “transition years” include just becoming an adult that lives with diabetes. These years are not easy most of us, let alone for someone that lives with diabetes. Some common behaviors and emotions include:
Push for control. Teens may resist parent involvement because they want total ownership. Teens may resist parent involvement or they may not want anything to do with diabetes management. For some, taking charge of diabetes care is like second nature. Teens participating in sports or are physical active may have had to learn more about managing blood glucose levels at younger ages.
Burnout moments. Daily diabetes management is a lot to handle – especially if you are new to doing it on your own. Teens and young adults may feel tired or overwhelmed between new routines or device management. It is important that the individual has a support system to help get through difficult times. Connecting with peers through the local American Diabetes Association chapter or check in with your endocrinology office if they offer a listing of support groups.
Emotional ups and downs. Hormone changes, stress, school, sleep shifts, and social pressures can affect diabetes management and mood. Handling adult relationships and deciding when to share about living with diabetes.
Forgetfulness. Busy schedules and growing independence can lead to missed doses or late refills if planning systems aren’t in place. This can occur to anyone, not just young adults but busy schedules and growing independence can lead to missed or late giving insulin, late refills if planning systems are not in place. Sometimes life just happens and we have to review schedules to prevent the situation from happening repeatedly.
Throughout all of these changes, it’s critical that everyone does their best to stay patient and supportive of each other. Living with diabetes teaches that doing the exact same thing every day one can still have different blood glucose readings and keep managing diabetes in perspective. Take it one day at a time.
Mapping Out The Transition Process
Most pediatric clinics follow a similar path when transitioning to adult care starting with an education phase, in which care providers begin teaching independence skills to both the family and child. For some teens they may have been diagnosed with diabetes as infants, toddlers, adolescents and really have had their parents or guardian provide the diabetes care. It is a really good time for the teen or young adult to attend diabetes education refresher classes, on their own. Often these classes are kept with similar age groups, so attendees have similar concerns. This also helps build confidence for the young adult in how to manage situations.
If adult practices allow, it is encouraged to start with a “shared visit” in which the young adult spends part of the appointment alone with the Provider. If there is more than one Provider in an adult clinic, they sometimes allow families to interview the adult endocrinologist or health care provider, which maybe a nurse practitioner or physician assistant, that fit their needs.
The first adult visit gives the young person the opportunity to lead the appointment while the parent shifts into a support role, not the manager role. Finally, the young person takes over the follow up routine, scheduling visits, managing prescriptions, and tracking glucose patterns independently.
New Chapter, Same Team
This transition is a milestone worth celebrating. It means your child is growing into a young adult who can care for themselves and manage living with diabetes safely and confidently. Families may step back from doing the tasks, but they never step back from support.
Author: Janet Dominowski, MS, RDN, CDCES/CCS Health
This site is for educational purposes only. Talk to your doctor or healthcare provider before making any decisions about your health.
