Download Transition of Care

But My Patient Is an Adult:
Transition of Care:
When, Why and How?
David Drajpuch, MSN CRNP
Adult Congenital Cardiology Nurse Practitioner
Philadelphia Adult Congenital Heart Center
Children’s Hospital of Philadelphia and Penn Medicine
December 12, 2014
Transfer vs. Transition
 Transfer = the act of switching care from a
pediatric hospital to an adult hospital
 Transition= entire process of moving from
pediatric to adult care. This includes:
 Preparation and readiness for the adult health
care system
 Transfer
 Long-term follow-up
The Scope of the Problem
• 85-90% of children with CHD survive to
adulthood
• Adolescents with CHD are at increased risk for:
– Unnecessary dependency
– Neurodevelopmental difficulties
– Psychosocial delay
• 50-75% do not continue with regular cardiology
follow-up
Pediatr Cardiol 2007; 28: 126–133.
J Pediatr Psychol. 1991;16:137– 49.
Capturing the ACHD Population:
Lost in Transition
Mackie AS et al. Circulation. 2009;120:302-309
Not Our Problem
The Process of Transition Begins…
Age at Which Pediatricians
Think Transition Planning Should Begin
Ages
Adolescents
with Special
Needs
Adolescents
without Special
Needs
<12 years
3%
2%
12-14 years
6
6
15-17 years
25
26
18-20 years
62
65
Don’t know
4
2
From: Child and Adolescent Health Management Initiative. 2005/2006 National Survey of Children with Special Health Care Needs.
Accessed from www.cshcndata.org/dataquery/dataqueryprint.aspx
Circulation 2011, 123:1454-1485
It’s a Problem…
Birth to 4 years
• Keep a copy of records – “Care Binder”
• Attend support groups and learn from others
• Begin teaching/encouraging interactions with
health care team (parents and patient)
Circulation 2011, 123:1454-1485
4-6 Years of Age
• Explain their heart condition to them in terms
they can understand
• Begin teaching them about their
medications/allergies
• Teach them symptoms that may indicate they
are sick
• Talk to families about assistance if the child
needs special help in school (IEP)
…family members laid the foundation of future
independence by teaching and giving responsibility
to the child to carry out tasks of daily living and
medical self-care. Examples included talking with
health care providers, ordering and taking
medications, and developing positive medical habits
and routines. Several participants suggested that
this transfer of responsibility occur before the onset
of adolescence.
Improved self-care resulted in
smoother transition and follow-up
Pediatrics 2005;115:112–120
7-10 Years of Age
• Continue to work on understanding of their
heart condition
• Continue work on medication/allergies
• Discuss the names of the health care team
and what they do
• Encourage increased participation in
interactions with medical team.
• Work on symptom recognition.
Circulation 2011, 123:1454-1485
11-13 Years of Age
• Work on better understanding of the heart condition
• They should know the names of medications and
what they do
• Encourage the child to do the bulk of the speaking
during interactions with the health care team; ask
parents to step out.
Circulation 2011, 123:1454-1485
14-17 Years of Age
• Have them practice explaining their heart condition
in three sentences or in detail
• Should know their medications and why they take
them.
• They should do the talking during the visit.
• Parents should step out.
• The teen should take part in any decision needing to
be made about their health (ascent).
• Begin discussion about what happens after high
school…and adult providers
Circulation 2011, 123:1454-1485
Adolescent Development
Early
adolescence
PSYCHOLOGIC
Concrete thinking
Progression of sexual identity
Reassessment of body image
SOCIAL
Emotional separation from parents
Start of strong peer identification
Early Exploratory behaviors
Mid-adolescence Abstract thinking
Invincibility
Identification of law with
morality
Further separation from parents
Strong peer identification
More health risk behaviors
Sexual relationships with peers
Early vocational plans
Late adolescence Complex abstract thinking
Increased impulse control
Development of personal
identity
Social autonomy from parents
Intimate relationships
Emergence of vocational capability
and financial independence
18 to 21 Years of Age
• They know their condition by this time, and
are in charge of decisions!
• Discuss any school or work concerns
(disability/insurance).
• Get permission to speak to parents.
• Consideration of transfer of care/Identify
appropriate adult providers.
Circulation 2011, 123:1454-1485
Psychosocial needs of
the adolescent/adult patient
•
•
•
•
•
•
•
Autonomy versus reversion to childhood
Inclusion in rounds/decision making
Anxiety/depression
Advanced care planning
Returning to school work
Finances/insurance
Sexual health
Key Areas of Patient Mastery
•
•
•
•
•
•
Anatomy and Interventions Performed
Medications/Allergies
Health Maintenance
Insurance
Occupation and Education Guidance
Fertility, Contraception, and Pregnancy
Adapted from ACC/AHA 2008 Guidelines for the Management of Adults With Congenital Heart Disease. J Am Coll
Cardiol 2008;52:e143–263.
Keys to Success for the ICU Nurse
• Recognize that self care starts at birth
• Develop partnership with patients and families
to foster empowerment and self care
But My Patient Is an Adult:
Transition of Care:
When, Why and How?
David Drajpuch, MSN CRNP
Adult Congenital Cardiology Nurse Practitioner
Philadelphia Adult Congenital Heart Center
Children’s Hospital of Philadelphia and Penn Medicine
December 12, 2014