1. Transition of Care: When, Why and How? But My Patient Is an Adult:
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

2. 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

3. 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.

4. Capturing the ACHD Population: Lost in Transition
Of patients diagnosed with CHD <6 years old, only 39% of those between years saw a cardiology
A significant number of adult patients are lost to care after they turn 18 but this attrition starts in the pediatric years.
>20% of those with severe CHD are lost to care after 18 years
Not just a problem in adulthood
not simply because they are being told they are “good to go”
We are failing this patient population in two ways
ineffective transition process from peds cardiology to adult cardiology
PMD are not bringing these patients back to cardiology care
Mackie AS et al. Circulation. 2009;120:

5. Not Our Problem

6. The Process of Transition Begins…
Age at Which Pediatricians
Think Transition Planning Should Begin
Ages
Adolescents
with Special Needs
without Special Needs
<12 years 3% 2%
12-14 years 6
15-17 years 25 26
18-20 years 62 65
Don’t know 4 2
Does not add up to 100% due to rounding
Start with the school age child
This AAP survey, which included a broad set of questions on adolescent health care, was sent to a random sample of 1,605 U.S. non-retired members. Data presented here are based on 628 respondents
Ask questions
How are you feeling
Do you know why you are here today
From: Child and Adolescent Health Management Initiative. 2005/2006 National Survey of Children with Special Health Care Needs. Accessed from

7. Circulation 2011, 123:

8. It’s a Problem…

9. 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:

10. 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)

11. Improved self-care resulted in smoother transition and follow-up
…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

12. 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:

13. 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:

14. 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:

15. Adolescent Development
PSYCHOLOGIC
SOCIAL
Early adolescence
Concrete thinking
Progression of sexual identity
Reassessment of body image
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

16. 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:

17. 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
1 in 3 patients meets criteria for psychiatric disorder, most commonly, anxiety disorder

18. 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.

19. 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

21. Transition of Care: When, Why and How? But My Patient Is an Adult:
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