The Endocrine Society's 97th Annual Meeting & Expo:
Transitional Challenges for Adolescents with Type 1 Diabetes: Pediatric to Adult Care
Challenges in pediatric-to-adult transition of care for the type 1 diabetic teenager/young adult were the subject of a presentation given by Jill Weissberg-Benchell, PhD, CDE, Associate Professor, Psychiatry and Behavioral Sciences, Feinberg School of Medicine, Northwestern University, Evanston, IL. Dr. Weissberg-Benchell spoke on March 8, 2015, at The Endocrine Society Annual Meeting in San Diego, CA.
Transition to Adult Care Is a Process
Transition to adult care for a teenager with type 1 diabetes is not merely the one-time transfer of care, it is a process that optimally begins long before the actual transfer of care.
Transition Within a Developmental Context
The developmental trajectory of individuals moving from early adolescence to adulthood is a key factor in the transition. Not all individuals move through these developmental stages at the same pace.
Tasks for Parents and Pediatric Provider
- Start looking at the patient’s skills.
- Is the patient ready to be on his or her own?
- What does the patient need to do or learn to be ready by the end of high school?
- Practice these skills in the safety of the home.
- Work together as a team—parents, teen, and pediatric provider
- Communicate well, collaborating and problem-solving
Early Adolescents (10 – 13 Years of Age)
- Physical: Puberty begins, as well as rapid growth.
- Cognitive: Thinking is still fairly concrete, with more sophisticated thinking emerging.
- Emotional: Peer teasing and bullying
- Social: Interest in forming intimate relationships with peers
- Family: Increased need for privacy, a push for independence with the beginnings of detachment from parents
Middle Adolescents (14 – 17 Years of Age)
- Physical: Puberty is coming to an end. Girls’ growth spurt is ending while boys’ growth spurt may be just beginning.
- Cognitive: More sophisticated thinking is emerging.
- Emotional: Sense of identity is developing, along with thoughts of leaving home.
- Social: Concern with peers, sexuality, and dating
- Family: Interdependence
Emerging Adults (18 – 30 Years of Age)
- They are mapping their course through life.
- Searching for their place in society
- Seeking a sense of commitment/attachment to others (friends and loves)
- Balancing competing demands of education, relationships, career building
Early Phase of Emerging Adults (18 – 22 Years of Age)
- In Arnett’s survey of 18 – 24 year olds, the hallmarks of being an adult were defined as accepting responsibility for yourself, making independent decisions, becoming financially independent, and forming your own beliefs and values.
- Few of those surveyed believed they had achieved these goals.
In the 2000 US Census, 56% of men and 43% of women in this age group lived at home with their parents. In the 2010 US Census, 59% of men and 50% of women in this age group lived at home with their parents.
The median age of first marriage in 1970 was 22.5 years for men and 20.6 for women; in 1988, 25.5 years for men and 23.7 for women; in 2009, 28.4 years for men and 26.5 for women.
Key normative tasks in this age group:
- Finding and keeping a place to live
- Paying bills
- Balancing a bank account
- Managing credit
- Engaging in permanent relationships
- Choosing a career
These responsibilities are now met with less help, structure, and support than in the past. The type 1 diabetic young adult is burdened with daily health-related demands in addition to these normative demands.
Late Phase of Emerging Adults (23 – 30 Years of Age)
- One’s sense of identity is maturing.
- Seeking more adult roles of stable intimate relationships and financial independence
- The importance of better health outcomes is appreciated, and self-care behavior improves.
- A critical window of opportunity for healthcare practitioners to collaborate and educate.
Developmental Challenges Facing All Adolescents
- Wanting to be the same as peers
- Problem-solving and abstract thinking
- Embracing the goals of the diabetes treatment regimen
- Frustration that adherence does not always improve outcomes, and poor adherence does not always impair outcomes.
- Desire for increased independence and responsibility
- Increasing independence often results in less supervision.
- Schedules are more erratic.
- Puberty may affect diabetes outcomes.
- Sex, drugs, and alcohol experimentation
- Sense of invulnerability
- Sensitive to sarcasm and hypocrisy
- Not always aware of the risks or consequences of their actions
Psychosocial Needs in the Context of Diabetes
- Self-care is not easy.
- Lapses in self-care are not a sign of failure, as the demands of life can get in the way. Lapses do not mean the patient is on strike.
- Goals should be achievable.
- All patients work and learn at a difference pace.
Psychosocial Needs: Relationships with Peers
- When away from your closest friends and family, how do you get in touch with them for support? Where do you find others who will offer consistent support?
- When and how do you tell about the illness? Roommate? Lab partner? Coach? Resident assistant?
- How do you gauge your comfort level about discussing it?
- What do you tell them? Do you clarify misconceptions? Tell them how to help should that be necessary
Psychosocial Needs: Relationships with Parents
- Phoning home should be encouraged, since parents worry.
- They should be kept up to date about your health and experiences with new healthcare providers.
Key Tasks for Parents
- Talk about normal activities before addressing health issues
- Accept your child’s greater independence while still remaining connected
- Pay attention to your tone of voice when discussing medical issues
- Inquire as to how you can be of help.
- Anticipate challenges and facilitate problem solving to overcome them.
- Discuss important, developmentally appropriate topics such as dating safety, choosing friends wisely, safety at parties, contraceptive techniques and sexually transmitted disease risk, smoking, alcohol, and drugs.
The goal of planning the transition from a pediatric to adult healthcare provider is to provide developmentally appropriate healthcare in a coordinated, seamless manner across centers, in partnership with the patient.
Sixty percent of youth with type 1 diabetes do not receive sufficient preparation to enter adult care successfully. Sixty-five percent report at least one adverse medical outcome that resulted from difficulty accessing care. Half switch adult providers at least once after leaving pediatric care.
Part of transition planning is making sure the patient knows how to:
- Fill a prescription
- Pay for that prescription
- Order supplies before running out
- Make an appointment
- Contact members of the medical team
- Have a sick-day plan
The patient should bring the following to school:
- Medical records
- Medical supplies
- Medical alert ID
- Phone numbers
- Insurance card
- Sick-day supplies such as a thermometer, Jello (and the means to prepare it), saltines, broths, over-the-counter medications, cough drops
- Schedules at school are unpredictable. Can the medical regimen be maintained amid an erratic schedule?
- Students eat irregular meals and late at night. Perhaps a dietitian can advise.
- The patient will need access to healthy foods.
- Friends will eat whatever is in the dormitory room or house/apartment.
- Ready-access supplies will need to be kept in a fixed location (back pack, room)
The Transition Algorithm
Step 1: Initiate at age 11 – 12 years. Formal transitions policy and discussion of that policy with the family. The policy should include:
- Expected age of the patient transfer
- The patient’s responsibilities in preparing for transition
- The parent’s responsibilities in preparing for transition
- The medical team’s responsibilities in preparing for transition
Step 2: Around age 14 years. Patient and parents develop a transition plan that acknowledges the patient’s abilities and responsibilities as well as those of the family.
Step 3: Age 15 – 17 years. Joint review of the transition plan between patient and parents. Goal achievement should be assessed at least once a year, possibly using checklists available on the Web.
Step 4: Age 18 – 21 years. Implement adult care or transfer to an adult medical provider, using a portable medical summary for both the patient and adult provider.
The transition of the adolescent/young adult with type 1 diabetes to adult care should occur within a developmental and psychosocial framework. The transition should be planned over a given time period and adult self-care skills built slowly in a partnership between adult provider, patient, and family, who should all maintain open communication and a healthy sense of humor during the process.
March 18, 2015