TRANSITIONAL CARE
IN THE MED-PEDS CLINIC
Objectives
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1. To understand the definition and concept of
transitional care.
2. To gain knowledge on transitioning the youth with
special health care needs.
3. To understand transitional care in the context
of Med-Peds training.
4. To gain resources to promote effective transitioning
of youth with special health care needs.
Transition definition
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The movement from adolescence to
adulthood in all aspects of life
including home, health care,
education, and community
Healthcare Transition Definition
“The purposeful, planned movement
of adolescents and young adults with
chronic physical and medical
conditions from child-centered to
adult-oriented health care system”
–Society of Adolescent Medicine
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WHO’S INCLUDED?
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Asthma
ADHD
Diabetes mellitus
Sickle cell disease
Cystic fibrosis
Chronic kidney disease
Inflammatory bowel disease
Congenital heart disease
Childhood cancer survivors
Solid-organ transplant recipients
Spina bifida
Downs syndrome
…ALL pediatric patients!!!
IMPORTANCE
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500,000+ youth in the United States who have
special health-care needs are entering adulthood yearly
90% with special health care needs survive into
adulthood
Cystic Fibrosis
45
40
35
30
25
Life Expectancy
20
15
10
5
0
1950
1965
1980
1995
2000
Consequences of poor transitioning
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↑ Organ rejection (Watson, 2005; Annunziato, 2007)
↑ Hgb A1C (Cadario, 2009)
↑ Disease activity in Rheumatoid arthritis (Hersh, 2009)
Lapse of medical care in Congenital heart disease (Yeung, 2008)
 32% told no need for follow up care
 3.1 times more likely to require urgent cardiac care
↑ 2o conditions, late effects & complications
 ↑ Alzheimer in Downs Syndrome <50 years (Dykens, 2007)
↑ Adverse effects (seizures, deafness) in cancer survivors
(Condren 2005)
↑ Cognitive deficits (Kadan-Lottick et al., 2002)
↑ Unemployment (Guerney et al., 2009)
↑ Not married (Guerney et al., 2009)
Bright Futures: Stages of Development
Interdependence
Self efficacy
Early Autonomy
Parent Effectiveness
Alliance with parents
SHARED MANAGEMENT MODEL
Stage
Provider
Parent
Young Person
1
Major responsibility
Provides cares
Receives care
2
Support to parent & child
Manages
Participates
3
Consultant
Supervisor
Manager
Resource
Consultant
Supervisor
Early Adolescence
4
Late Adolescence
Issues related to Transition
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Envisioning a Future
Basic knowledge
Self care
Doctor visits
Healthcare Transition
Transition to Adulthood
**Varies based upon an individual’s cognitive & physical limitations**
Envisioning a Future
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GOAL: Independence, Self-care!
TIMELINE: Intermittently during disease-free periods from the time of
diagnosis … not at time of transition to adulthood!
Ask parents:
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“What are you hoping for your child?”
“What do you envision for your child?”
Ask patients:
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“Where do you plan on living?”
“Who do you plan on living with?”
“What kind of education or job do you want to pursue?”
“Do you want to be financially independent?”
Basic Knowledge
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Adolescent should be able to:
 Able
to name health condition
 Able to know effects of health condition
 Able to name medications
 Able to know effects/side effects of medications
Self Care
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Acquire knowledge of good health habits
 Provided
with age-appropriate anticipatory guidance
 Includes
counseling on sexual health practices, tobacco, and
illicit drug use
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Able to comply with medication and treatment
regimen
 Take
medications properly
 Ensure adequate medication supply
 Use treatment equipment properly
Doctor Visits
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Knows physicians and their scope of care
 Able
to identify single provider to assume responsibility
for care and coordinate subspecialty services
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Able to make and attend appointments
Able to answer physician’s questions
Knows important questions to ask physicians
Able to be assertive to obtain care needed
Healthcare Transition
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Finding adult primary care provider and subspecialists
Assessing future medical needs
Ensuring adequate transfer of information
 Written
portable medical plan which includes:
 Emergency
summary page
 Medical history including current treatments
 Providers’ contact information
 Medications
 Allergies
 Questions for future visits
Transition to Adulthood
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New legal rights
Begins at 18 years old
 Independence in medical decision-making with parents no
longer having automatic access to medical records
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Exception: Guardianship appointment due to mental
limitations
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Parents still good consultants and invaluable resource within the
boundaries of HIPAA
If applicable, legal process should start prior to 18th birthday –
ideally between 16-18 years old
Acquiring and maintaining health insurance
Knowing how to get care in cases of emergency
MED-PEDS TRAINING
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POSITIVES
Lifetime continuity of primary care provider
 Familiarity of childhood diseases and their natural progression
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~90% of Med-Peds graduates comfortable caring for patients with
special healthcare needs
Able to help patient navigate from pediatric to adult
subspecialists
 Provide home for medical information
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Keeping up-to-date WebCis Problem Lists and Medication Lists for all
providers to see
Able to provide lifelong, age-appropriate anticipatory guidance
MED-PEDS TRAINING (contin.)
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LIMITATIONS
 Patients
have natural transition points when they
have to graduate from the pediatrician’s practice
and enter the adult world of internal medicine
 AAP
recommends that pediatricians should not provide
care beyond 21 years of age
 Med-Peds
practice requires physician to make a
conscious effort to transition the patient through the
stages of development and to continue to increase
patient autonomy despite lack of obvious transition
points
Early Adolescence (Ages 12-14)
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Assess and reassess transition readiness at every routine visit (at least on
an annual basis) with both the patient and parent/legal guardian to
establish a transition plan and create a portable medical summary
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FloridaHATS (http://www.floridahats.org/?page_id=608)
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Provide patient time alone with physician to increase patient autonomy
Establish portable medical summary
Administer age-appropriate screening and anticipatory guidance
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Screen for sexual activity, substance use, mood disorders (HEEADSSS, GAPS)
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Great resource including disease-specific information
Helpful resource: http://www.prch.org/arshepdownloads
GAPS is available at the AMA website (http://www.ama-assn.org/)
Administer routine immunizations
Late Adolescence (Ages 15-17)
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In addition to Early Adolescence recommendations…
Continue to reassess transitional readiness with emphasis on young adult
taking the lead role in care
Keep patient’s portable medical summary up-to-date
Begin to plan transition to adult subspecialists in coordination with current
pediatric providers
Help with maintaining patient’s insurance
Explore educational and vocational goals
 Ticket to Work Program (http://www.ssa.gov/work)
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Great resource with local contact info
Discuss legal rights as 18th birthday approaches and
initiate plans to secure guardianship when
mental limitations exist
Patient Resources
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Patient and family handouts
Transition plans including timelines
& questionnaires to assess
readiness
Portable medical summaries
Additional information including
transition information on particular
chronic diseases
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North Carolina Office on Disability and
Health
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FloridaHATS
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http://www.hrtw.org
AAP Portable Medical Summary
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http://depts.washington.edu/healthtr/
Healthy and Ready to Work
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http://www.mahec.net/quality/chat.aspx?a=10
University of Washington
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http://www.floridahats.org/?page_id=608
CHAT Project (links to UNC-based resources)
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http://www.fpg.unc.edu/~ncodh/ChildandAdolescent
Health/
http://www.aap.org/advocacy/blankform.pdf
http://www.aap.org/advocacy/eif.doc
Ticket to Work Program
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http://www.ssa.gov/work