Every day in travels to my outpatient clinics, I observe the process of maturation of my patients as they grow through kindergarten and elementary school, middle and high school and then finally on to college and in many cases graduate school.
When is it time to say to goodbye and usher our children into the adult world of endocrinology?
There has been a movement in the realm of pediatrics to study "the transitioning adolescent" to adult practice during the past few years. Protocols address this very issue to allow for successful transition of children living with chronic disease to our adult counterparts. In the latest edition of Diabetes Care, volume 34, Nov 2011, 2477-2485, a position statement authored by Anne Peters, MD, CDE, Lori Laffel, MD, MPH, and the ADA Transitions working group was released by the American Diabetes Association: "Diabetes Care for Emerging Adults: Recommendations for Transition from Pediatric to Adult Care Systems."
Why has this particular issue become so important as our children become young adults?
As children become adolescents and young adults, there are gradual changes in diabetes care responsibilities that become shifted from the parents to the adolescent and young adult. Sometimes, as we have discussed in the past, many adolescents are not quite ready to assume the responsibilities of self-care skills due to the characteristics associated with their developmental stage (impulsivity, peer group pressure, etc.) and caregivers must reestablish the previous care-giving behaviors. However, once the child moves on to college or employment the change from the pediatric diabetes multidisciplinary team to the adult endocrinology team is often fraught with anxiety and concern. Thus, preparation is required to allow for the smooth transition from pediatric to adult care. According to the authors of the position paper, the age range for transition is defined from 18 to 30 years of age, as this developmental stage is defined "emergency adulthood."
What are the Issues in the Transition from Pediatric to Adult Care?
The transition from pediatric care often by a multidisciplinary team to an adult endocrine practice is often abrupt and without preparation. There are differences between pediatric and adult care, including:
1. Focusing on the patient and not the family unit, whereas in the past diabetes self-care skills were often shared
2. Shorter visits in the adult practice
3. Healthcare information privacy
4. Freedom of choice to make own therapy decisions
As such, upon transition to adult care, there are many barriers to success including
1. Ability of glycemic control in emerging adults
2. Loss to follow-up due to competing distractions (college, employment, insurance concerns)
3. Increased risk of complications (severe hypoglycemia, Diabetic ketoacidosis)
4. Psychosocial issues
a. Mental illness onset
c. Eating disorders
d. Relationship stresses
5. Sexuality concerns:
b. Sexual orientation and gender concerns
6. Smoking, alcohol, and drug usage
7. Chronic disease complications including protein in the urine, retinopathy, peripheral neuropathy, hypertension
As a result of these barriers and due to the vulnerability of our emerging adults the goal of transition to adult care is to focus on easing the transfer process from pediatric to adult healthcare providers. Summaries of various studies (especially in Cystic Fibrosis) have identified the need to develop programs that can "identify a transition coordinator who reaches out to the transitioning emerging adult using multiple methods of delivery (phone, mail, email, text messaging, social media) to ensure timely follow-up visits." Another model also is recommended--a special clinic--where both pediatric and adult providers are in attendance. However, it appears that there is no one model that encompasses all transitioning adolescents.
In summary, the ADA Recommendations for Care Transition of Emerging Adults with Diabetes is as follows.
1. Pediatric healthcare providers working collaboratively with the emerging adult and family should prepare the teen for upcoming transition at least one year prior to transfer to adult providers.
2. Preparation should include a directed focus on diabetes self-management skills for the teen and adult caregivers. There should be a gradual transfer of diabetes related care responsibilities to the teen from the adult caregiver. Diabetes education should now be directed toward the "emerging adult."
3. Preparation should include information about the differences between pediatric and adult providers in their approach to care as well as health insurance options.
4. The pediatric provider should prepare and provide to both the patient and future adult healthcare provider a written summary that includes problem lists, medications, assessment of diabetes self care skills, summary of diabetes control and associated illnesses, as well as a psychosocial summary including mental health referrals in the past.
5. Healthcare providers need to recognize the vulnerability of young adults with diabetes due to competing lifestyle concerns.
6. The transferring pediatric providers should provide specific referrals to adult providers that match the needs of the specific emerging adult.
7. The transferring pediatric providers should provide our young adults with links to resources should they become lost to follow-up.
8. Care must be individualized and developmentally appropriate for each young adult.
9. Emerging adults must be evaluated and treated for potential eating disorders and mental illness.
10. Visits should occur every 3 months for young adults taking insulin and 3-6 months for patients with type 2 diabetes not taking insulin.
11. Screening guidelines for microvascular and macrovascular complications in young adults should be continued.
12. Risk assessment for macrovascular complications should begin in childhood and continue in the adult practice.
13. Birth control, pregnancy, STD, alcohol, smoking, driving, etc., should be discussed with pediatric providers and continue with adult healthcare provider.
14. Recommendation for continued preventive healthcare with a primary care physician.
Our Diabetes program at Children's National Medical Center constructed a rough draft of a transition protocol that will reflect the recommendations of the ADA position statement. It will be a work in progress.
Published On: November 14, 2011