transition planning

GROWING UP AND MOVING ON:
TRANSITIONING FROM
PEDIATRIC TO ADULT CARE
Jill Weissberg-Benchell, Ph.D., CDE
WHAT IS TRANSITION?
 “The
purposeful, planned movement
of adolescents and emerging adults
with chronic physical and medical
conditions from a child-centered to
an adult-oriented health care system”

Society of Adolescent Medicine, J. Adol. Health, 1993, 14, 570-6
WHAT IS IT NOT?
 Transition
is not merely the transfer of
care.
 It is not a one-time event. Instead, it is a
PROCESS.
 To be successful, transition from
pediatric to adult care begins long
before the actual transfer of care
occurs.
TRANSITION WITHIN A
DEVELOPMENTAL CONTEXT

The developmental trajectory of individuals
moving from early adolescence to adulthood
is key.

Within the context of an individual’s
normative development, plans for a
successful transition may occur.
TRANSITION WITHIN A
DEVELOPMENTAL CONTEXT

Not all individuals move through these
developmental stages at the same pace.
Age is a proxy, not an absolute.

A Key goal in preparing for transition is to
help the young person understand the
changes they are undergoing so that they
can use that knowledge to become an expert
problem-solver and decision-maker.
KEY DEVELOPMENTAL ISSUES FOR
EARLY ADOLESCENTS
(10-13 YEARS OF AGE)

PHYSICAL: Puberty begins. Rapid growth
begins.
• How does someone get used to their ever-changing
body?
• Puberty changes all of the “rules” about diabetes. Who
warns families about this?

COGNITIVE: Tends to still be fairly concrete.
Emergence of more sophisticated thinking.
KEY DEVELOPMENTAL ISSUES FOR
EARLY ADOLESCENTS
(10-13 YEARS OF AGE)

EMOTIONAL: Peer teasing/Bullying.
Sense of belonging

SOCIAL: Interested in forming intimate
relationships with peers.

FAMILY: Increased need for privacy, push for
independence/beginning to detach from parents
COMMUNICATION SKILLS OF
ADOLESCENTS
DEVELOPMENTAL ISSUES FOR
MIDDLE ADOLESCENTS
(14-17 YEARS OF AGE)
 PHYSICAL: Puberty is ending. Girls are
ending their growth spurt. Boys may be just
starting.
 COGNITIVE: Emergence of more
sophisticated thinking.
 EMOTIONAL: Identity development.
• Thinking about leaving home.
• Deciding on morals/values
• Am I the same/different than my parents?Peers?
DEVELOPMENTAL ISSUES FOR
MIDDLE ADOLESCENTS
(14-17 YEARS OF AGE)
 SOCIAL: Peers, sexuality, dating, activities.
• Who are my friends?
• Who am I attracted to?
• What makes me happy?
– Academics, Recreation, Social
 FAMILY: Interdependence?
• Relationship with parents is changing – from the
boss/director to a wise counselor
DEVELOPMENTAL ISSUES FOR
ADOLESCENTS
Wanting to be the same as peers
 Increased problem-solving and abstract
thinking skills
 Ability to understand goals of treatment
regimen
 Frustration that adherence doesn’t always
lead to improved outcomes, and poor
adherence doesn’t always lead to worse
outcomes.
 Desire for increased independence and
responsibility

DEVELOPMENTAL ISSUES FOR
ADOLESCENTS
Increasing independence often results in
decreasing supervision.
 Schedules are more erratic than younger
peers.
 Puberty may play a role in diabetes
outcomes.
 Experimenting in Sex, Drugs, Alcohol.
 Sense of invulnerability in this age group.

DEVELOPMENTAL ISSUES FOR
ADOLESCENTS
 Understand
Sarcasm.
 Understand – keenly aware of –
Hypocrisy
 Sometimes will not pay attention to the
risks or consequences of what they do
THE DEVELOPING BRAIN
fMRI data shows huge changes as individuals
move from childhood through adulthood.
 Prefrontal Cortex:

•
•
•
•
•
•
•
Planning ahead
Controlling impulses
Decision making
Goal setting
Metacognition
Emotion regulation
Evaluating risks and rewards
Time-Lapse
Imaging
Tracks
Brain
Maturation
from ages
5 to 20
•10-year NIH fMRI study
•4-21 y.o. participants
•Brain continues to
Change until mid 20s
Adolescence According to
Alice Cooper
I’m a boy and I’m a man…
I’m 18 and I don’t know what I want…
I got a baby's brain and an old man's heart
Took eighteen years to get this far
Don't always know what I'm talkin´ about
Feels like I'm livin´ in the middle of doubt
Cause I'm eighteen, I get confused every day
Eighteen, I just don't know what to say
Eighteen, I gotta get away.
KEY DEVELOPMENTAL ISSUES
FOR EMERGING ADULTS (18-30)
 Mapping
their course through life.
 Searching for ones place in society
 Searching for a sense of
commitment/attachment to others –
friends and loves.
 Balancing competing demands:
• Education, relationships, career building
 Two
Phases: Early (18-22) Late (23-30)
EARLY PHASE OF
EMERGING ADULTS (18-22)
 Arnett’s
survey. 18-24 year olds.
Hallmarks of being an adult:
•
•
•
•
Accept responsibility for yourself
Make independent decisions
Become financially independent
Independently form beliefs and values
 VERY
goals.
few believed they achieved these
EARLY PHASE OF
EMERGING ADULTS (18-22)

2000 U.S. Census:
• 56% of males, 43% of females in this age
group live at home with parents.

2010 U.S. Census:
• 59% of males, 50% of females in this age
group live at home with parents.
EARLY PHASE OF
EMERGING ADULTS (18-22)

1970 Median Age of First Marriage:
• 22.5 for men
• 20.6 for women

1988 Median Age of First Marriage:
• 25.5 for men
• 23.7 for women

2009 Median Age of First Marriage :
• 28.4 for men
• 26.5 for women
EARLY PHASE OF
EMERGING ADULTS (18-22)

Key Normative Tasks:
•
•
•
•
•
•
Finding/keeping a place to live
Paying bills
Balancing bank account
Managing credit
Relationships that may be “forever”
Choosing a career
Now with less help/structure/support than
before.
 Now must weave daily health-related
demands into all of these normative
demands.

LATE PHASE OF EMERGING
ADULTS (23-30)
Maturing sense of identity
 More “adult” roles – stable intimate
relationships, financial independence
 Often recognizes importance of better health
outcomes and now more receptive to
improving self-care behavior.
 A critical window of opportunity for HCP’s to
provide education and collaboration.

Emerging Adults According to the
Philosophy of Neil Young
Old man take a look at my life, I’m a lot
like you..
 Twenty four and there’s so much more..
 I need someone to love me the whole
day through, Ah one look at my life and
you can tell that’s true…
 Old man, take a look at my life, I’m a lot
like you were.

TRANSITION PROCESS

Developmental framework
• Informs our thinking.
• Places transition tasks within a larger context

Process is often bumpy, but can be
moderated by:
• Taking care of Psychosocial Needs
• Understanding Previous Experiences with
health care professionals.
• Acquiring/ monitoring Specific Skill Sets
PSYCHOSOCIAL NEEDS
The Person with Diabetes
 Self-
Care is NOT EASY
 Lapses are NOT a sign of failure
• Life can get in the way
• Lapses ≠ going on strike ≠ there’s no
point to trying.
 Set
goals that are achievable.
 Everyone works/learns at a different
pace.
PSYCHOSOCIAL NEEDS
Relationships with Peers

Away from your closest friends and family.
How to get in touch with them for support?

How to find other people who will be there
when needs support?
PSYCHOSOCIAL NEEDS
Relationships with Peers

Who To Tell?
• Legal/honest for insurance/driver’s license
applications
• Roommate? Lab Partner? Coach? RA?

What To Tell?
• Clarify Misperceptions
• How to help should help be necessary

When To Tell?
• What is your own sense of comfort/timing?
PSYCHOSOCIAL NEEDS
Relationships with Parents
 Call
your parents –they worry!
• Keep them up to date about your health
• Talk about experiences with new
providers
PSYCHOSOCIAL NEEDS
Relationships with Parents

Key Tasks for Parents:
• ALWAYS talk about Normal things first.
• Accept increased independence while still
remaining connected.
• Pay attention to tone of voice when talking
about medical things.
• Ask what things you can do that they would
find helpful.
• Anticipate challenges and facilitate problem
solving to address/over come them.
PSYCHOSOCIAL NEEDS
Relationships with Parents

Always talk about Important,
Developmentally Appropriate Topics:
•
•
•
•
Dating Safety
Choosing Friends Wisely
Safety at Parties
Sexual Activity – Disease risks/ Contraception
Choices
• Smoking
• Alcohol
• Drugs
WHY PARENT NAGGING DOESN’T WORK
Hagar © King Features Syndicate. April 6, 1999. Used with permission.
33
CHALLENGES WHEN OFFERING
FEEDBACK TO YOUR PARENTS
PAST EXPERIENCES WITH
HEALTH CARE PROFESSIONALS

Relationship Building Experiences?
– Unrealistic expectations for self-care behavior
– Unrealistic expectations for medical outcomes
– Punitive/judgmental clinic visits
– Feeling burned-out/a chronic failure

Communication Experiences?
– Families do not feel that transition is discussed with
them.
– No plans in place for access to adult
services/resources
– How to access subspecialties versus primary care
PAST EXPERIENCES ADVOCATING
FOR YOUR OWN HEALTH

Can You Be an Effective Patient?
• Finding a team that understands YOU make the day
to day decisions.
• Finding a team that’s up to date on research &
technology.
• Finding a team that knows they’re your coach or
guide. They don’t dictate what you “should” or
“must” do.
• Remembering to ask for the things you need
– Prescriptions
– Letters
• Feeling comfortable talking about the annoyances so
you have others to help you problem-solve.
• Less time in clinics in adult programs (@15min).
TRANSITION PLANNING

Recognized as critical by important
stakeholders:
•
•
•
•
•
•
Healthy People 2010
American Academy of Pediatrics
Society for Adolescent Medicine
American Academy of Family Physicans
American Society of Internal Medicine
Royal College of Pediatrics and Child Health
TRANSITION PLANNING

GOALS:
• Provide Developmentally Appropriate Health
Care
• In a Coordinated, Seamless Manner
• Across Centers
• In Partnership with Patients
TRANSITION PLANNING

REALITY:
• 60% of youth do not receive services
necessary to successfully enter adult care
• 65% emerging adults report at least one
adverse medical outcome as a result of
difficulties accessing care
• 50% of emerging adults switch adult
providers at least once after leaving
pediatric care
TRANSITION PLANNING






Start looking at your patient’s current skills.
Are they ready to be on their own yet?
What do they need to do/learn to be ready by
the time they are out of high school?
Practice these skills in the safety of the
family’s home
Work together as a team- parents, teen and
medical providers.
Communicate well. Collaborate. Problem-solve
THE BASIC SKILLS
Action Plans
How to fill a prescription
 How to pay for a prescription
 Order supplies before running out
 How to make an appointment
 How to contact medical team members
 Have a sick-day plan

THE BASIC SKILLS
Supplies to Bring
Medical records
Medications
Medical Supplies
Medical alert id
Phone numbers
Insurance card
Sick day supplies
Thermometer, jello, saltines, broths, over
the counter meds, cough drops
SCHEDULING CONSIDERATIONS





Schedules will be unpredictable. Can the medical
regimen handle that?
Irregular meals and eating late at night. Consult
with a dietitian for tips on how to handle that?
Figure out where and how to get healthy foods.
Friends will eat whatever is in the dorm room or
house/apartment
Where will ready access supplies be kept? In
room, in back pack, etc.
TRANSITION PLANNING
Transition Algorithm, PEDIATRICS, July
2011
 Consists of FOUR STEPS


Initiate First Step in Transition Planning
at age 11-12.

First Step should include a formal
Transitions Policy and discussion of that
policy with the family.
TRANSITION PLANNING

Written Transitions Policy should
include:
• Expected age of patient transfer
• Patient’s responsibilities in preparing for
transition
• Parent’s responsibilities in preparing for
transition
• Medical team’s responsibilities in preparting
for transition.
TRANSITION PLANNING

Second Step:
• Jointly develop a transitions plan with youth
and parents. This should be formalized
around the age of 14.
• The transition plan should acknowledge
patient’s current abilities and current
responsibilities as well as family member’s
abilities and responsibilities.
TRANSITION PLANNING

Third Step (ages 15-17):
• Jointly review transition plan with youth and
parents.
• Assess goal achievement at least annually.
• Consider use of already-developed
checklists
TRANSITION PLANNING

Third Step:
• Already Developed Checklists
– Sick Kids: sickkids.ca/good2go
– Nemours: JaxHATS.ufl.edu/docs
– Texas Childrens:
leah.mchtraining.net/bcm/resources/tracs
– Carolina transitions project:
mahec.net/quality/chat.aspx?a=10
– University of Washington:
depts.washington/edu./healthtr
TRANSITION PLANNING

Fourth Step (ages 18-21):
• Implement Adult Care Model or implement
transfer to an adult medical provider.
• Jointly prepare a Portable Medical Summary.
Give both to patient and to receiving adult
provider.
CONCLUSIONS
DEVELOPMENTAL FRAMEWORK
 PSYCHOSOCIAL FRAMEWORK


Peers, Parents, Community
PLANNED OVER TIME
 SLOWLY BUILD SKILLS IN
PARTNERSHIP WITH PATIENTS AND
THEIR FAMILY
 MAINTAIN A HEALTHY SENSE OF
HUMOR
