At the American Diabetes Association (ADA) 80th scientific sessions, Dr. Robert Zimmerman MD, Vice-Chairman of Endocrinology and Director of Diabetes Center Cleveland Clinic, and his team discussed the importance of creating a smooth and seamless transition from pediatric to adult care.
This time of transition is considered a high-risk time for patients living with diabetes. Diabetes aside, these patients are dealing with other life stressors that often emerge at this point in their life. Coming off their parent’s health insurance, going off to college or out in the workforce, and having to pay their own bills can create a lot of stress. Because of this, patients often neglect their diabetes care. Having a transition plan in place from pediatric to adult care can help these patients feel empowered and equipped to handle their own diabetes care as they become young adults.
- Each year, thousands of adolescents with both type 1 and type 2 transition to young adults and also from pediatric to adult care.
- The developmental stage between ages 18-30 is defined as the period of emerging adulthood.
- Due to life stressors, this is a period where many are distracted from their diabetes care.
- During the first phase of transition, around age 18-24, many patients feel overwhelmed and have a tendency to reject parental control.
- During the second phase of transition, at about age 25-30, the young adult tends to take on more responsibilities in life and usually starts to place more importance on diabetes management.
- The period of emerging young adulthood is considered a high-risk time for patients with type 1 or type 2 diabetes.
Differences Between Pediatric and Adult Care
- Pediatric Approach
- Visits are with both child and parents
- Adult Approach
- The patient is autonomous in their care
- Individualized counseling
- The patient makes their own decisions regarding care
Major Risks During Transition
- Suboptimal Glycemic Control
- Only 32% of patients between 13-18 years old met ADA goals
- 18% of children under 18 achieved the ADA recommendation for A1c
- 56% of adults achieve an A1c of 7%
- Neglect of Diabetes Care
- Older teens and young adults tend to disengage from health care
- Both short-term and long-term complications can occur as a result of neglecting care
Factors That Increase the Risk of Hypoglycemia and DKA
- The loss of parental guidance
- Less frequent doctor visits
- Work/school stressors that take precedence over diabetes care
- Consumption of alcohol
- Change in physical activity
- Different dietary patterns than once had under parental care
- Lack of motivation to stay on top of health
Patients Face Many New Challenges During This Period
- Psychosocial challenges include worrying about the future, lack of a plan or goal in place for managing their diabetes, feeling anxiety, or being overwhelmed with care, handling uncomfortable social situations regarding diabetes.
- Psychological issues are prevalent during this time, although these can occur at any time while managing a chronic condition. Feelings of depression, anxiety, eating disorders and suicide are all concerns that need to be addressed during this time.
- Pregnancy is another issue that arises during this period of emerging adulthood.
- Contraception use is lower for adults with diabetes from the age of 20-44
- 39% of adults with diabetes do not use contraception compared to 27% of adults who don’t have diabetes
- An increasing number of women with pre-existing diabetes are becoming pregnant and having children
- Only 1 in 4 women with diabetes age 16-20 were aware of the risks involved with getting pregnant with diabetes and the importance of optimizing glycemic control before and during pregnancy in order to maximize the odds of conceiving and delivering a healthy baby.
- Other health risks that can happen at any age for people with diabetes seem to be most prevalent during these years: alcohol use, illegal drugs, smoking, driving and hypoglycemia.
Current ADA Recommendations for the Transition
- Pediatric health care provider works with the patient and parent planning for transitioning starting up to 1 year prior
- Preparation focusing on self-management for emerging teen
- Preparation should include the differences between pediatric and adult care and should help guide the patient on major decisions such as health insurance, etc.
- The provider should prepare and provide a list for the patient and new adult doctor summarizing the patient’s medications, assessment of skills, history, etc.
- Healthcare providers need to recognize all the changes during this period can lead patients to neglect care.
- The transferring provider should provide patients with specific referrals to adult physicians that would best fit the patient’s needs.
- The transferring physician should empower patients and provide them with any educational materials and resources that can help them to stay on top of their diabetes care.
- Care must be specific to the patient and strive to avoid both short term and long term complications.
- The provider must evaluate and treat emerging teens with any disordered eating behaviors or affected disorders.
- On-going appointments should take place every 3 months for patients on insulin and every 3-6 months for patients with type 2 who are not taking insulin.
- Screening guidelines should be followed for both microvascular and macrovascular issues as well as the management of lipids and hypertension.
- Birth control, drug use, driving, STDs, etc. should all be discussed with the teen and their parents by both the transitioning and adult physician.
- Both providers should make sure the patient is getting primary and preventative health care and feels comfortable with the care and support they are receiving.
Transition Options Available at The Cleveland Clinic Foundation
- Transition clinic: here, adolescents are taught how to manage their diabetes on their own. They are then introduced to the adult care endocrinologist who oversees the patient’s care after this first visit. The follow-up with the adult endocrinologist can happen on the transition floor or at Adult Endocrinology at the diabetes center.
- Transition shared medical visit: In this instance, a shared medical appointment takes place instead of their traditional appointment and the goal is to make the transition as smooth as possible for the patient.
- Adult endocrinology office visit: patient goes directly to the referred adult endocrinologist.
Cleveland came up with an Autonomy Checklist which helps patients to learn necessary information that they should have while transitioning to more autonomous care.
Cleveland Clinic put into place group visits that take place approximately every 3 months where they have an educational speaker, review A1cs, glucose readings and insulin adjustments to engage the adolescents as well as give individual exams.
Cleveland Clinic’s Transition Recommendations Moving Forward
- Creating flexible appointments: nights, weekends and special availability while young adults are home from college are important. Virtual appointments and classes will likely be the main way of interacting for this group. Dr. Zimmerman stated that their office went from “1% virtual visits to 75% in approximately one week’s time”.
- Building relationships: community support groups led by a provider, monthly events and taking advantage of organizations and apps like College Diabetes Network (CDN), where they can connect with others living with diabetes is useful.
- Transition simulation nights where young adults going off to college can go through possible scenarios and problem-solve together as a group. Questions like “my insulin fell and cracked open, where can I get insulin in the middle of the night?” or “My blood sugar suddenly is dropping, but I am in the middle of taking an exam, what should I do?” would be addressed.
Young adults transitioning from pediatric to adult care are a high-risk group that needs a supportive and comprehensive system in place, where caretakers understand the unique complexities of this life stage. Creating a seamless and specific transition plan will help guide these patients to achieve optimal health during these years.