1. Teen Clinic and the Healthcare Transition
Emily T. Hernandez
Pediatric Nurse Practitioner
October 22, 2016

2. Objectives Provide brief overview of adolescence and chronic illness
Discuss the need and goals of healthcare transition
Review milestones to achieve as an adolescent with chronic illness
Introduction to CHOA SOT Adolescent (aka Teen) Clinics
Discuss the core components of the adolescent transplant program
Understand the concept of a shared management model for transition purposes

3. Video about Teens living with chronic illness

4. Adolescence and Chronic Illness

5. The Adolescent Mind and Development
Cognitive –
Executive functions  arise from frontal lobe which is in process of maturing until ~ age 25
Identity –
Health status and transplant  Goal is for it to be a part of their identity, not their complete identity
Physical –
Delayed physical growth  body image concerns
Sexual –
May be perceived as fragile  have difficulty with romantic relationships
Autonomy –
May have always been “helped” and not an active member of the team
Peers –
Secure place in peer group  easier time taking meds when out with friend, being open about special needs, staying in touch with friends if hospitalized
Executive functions - ie. Planning, organization, decision-making, self-regulation, multitasking, self-awareness, impulse control
Adolescent brain maturation extends from years of age, therefore….
*** Development does not stop at time of transfer; AYA will continue to mature and learn after moving into the adult system

6. Healthcare Transition
Definition- “the purposeful, planned movement of adolescents and young adults (AYA) with chronic physical and medical conditions from child-centered to adult-oriented health-care systems.” Goals – “Provide healthcare that is uninterrupted, coordinated, developmentally appropriate, psychosocially sound, and comprehensive.”

7. Transition v. Transfer Transition Transfer
Active process that addresses the medical, psychosocial, and education/vocational needs of adolescents as they prepare to move from pediatric-centered healthcare to adult-centered healthcare.
The “event” of changing from a pediatric healthcare provider to an adult healthcare provider.

8. Why the need?
Advances in medicine have made it possible for transplant patients to live longer and become adults
Decrease risks of the following during/after time of transfer:
Medical morbidity
Graft damage
Use of healthcare resources
Loss of healthcare insurance
Immediate post-transfer period considered a “vulnerable” time

9. Milestones to achieve prior to transfer
Knowledge of underlying disease process that led to transplant
Awareness of long-term and short-term implications 2nd to transplant
Comprehension of how transplant may affect their sexuality and reproductive health
Demonstrate a sense of responsibility for their own healthcare
Capacity to provide self-care independently
Expressed readiness to assume adult responsibilities
21 steps to 21
Initial education may have been primarily provided to parents- necessary to ensure they understand their condition
Infection prevention, cancer surveillance, academic and vocational aspirations
Impact of pregnancy on their own well being
Effect of their medications on fertility
Potential teratogenicity of meds
Their own increased susceptibility to STD’s
Knowledge of med names, indications, dosages
Call in their own refills
Prepare med boxes
Independently communicated health needs to their providers
Know when and how to seek urgent medical attention (emergency phone numbers)
Make/keep own appts
Understand medical insurance coverage

10. Children’s Healthcare of Atlanta Solid Organ Transplant Department
Heart Transplant
Teen clinic
1-2x/mo
Kidney Transplant
Teen clinic
2x/mo
Liver Transplant
Teen clinic
1x/mo

11. Adolescent Transplant Clinics
Goal
Objectives
Prepare adolescents and young adults to function at their highest potential for medical management independence and transfer patient from pediatric healthcare facility to adult healthcare facility without disruption in care.
Obtain medical care
Promote self-management
Knowing meds/med schedule
Knowing clinic/lab schedules
Discussing important topics with care team
Knowing what to do in case of emergency
Encourage healthy lifestyle
Assess and educate on high risk behaviors
Assess/monitor psychosocial risks

12. Eligibility Criteria Criteria: - 14 years old
- At least 1 year post transplant
Exclusions:
- Unable to function independently as an adult
- Active illness (i.e. rejection) – defer to traditional txp clinic d/t need for more frequent monitoring

13. Multidisciplinary team
Physician/NP RN
Psychologist
Pharmacist
Social Worker
Registered Dietician
Disease/Medication knowledge
Promote adherence to:
Medications
Body image
Side effects
Clinic visits
Lab schedule
Screen for High Risk Behaviors:
Sex
Drugs
eTOH
Tobacco
HS diploma/GED/College degree
Importance of having medical benefits
Promoting healthy diet and avoiding sedentary lifestyles
Preparing for transition to adult healthcare
Parent
Patient
Provider
21 steps to 21

14. Barriers to successful transition
Insert key fact connected with photo
Patient not ready
Non-adherence
Parental anxiety
Attachments to pediatric team/ concerns from adult team
Loss/lapse of insurance

17. Resources
Bell, L., Barton, S.M., Davis, C.L. Dobbels, F., Al-Uzri, A., Lotstein, D., & Dhamidharka, V.R. (2008). Adolescent transition to adult care in solid organ transplantation: A consensus conference report. American Journal of Transplant, 8(11),
Blum, R., Dale, G., Hodgman, C., Jorissen, T., Okinow, N., Orr, D., & Slap, G. (1993). Transition from Child-Centered to Adult Health-Care Systems for Adolescents with Chronic Conditions. Journal of Adolescent Health, 14:
Colver, A. & Longwell, S. (2014). New understanding of adolescent brain development; relevance to transitional healthcare for young people with long term conditions. Arch Dis Child, 98 (11),
Fredericks, E.M. & Lopez, M.J. (2013). Transition of the Adolescent Transplant Patient to Adult Care. Clinical Liver Disease, 2 (5):
Kaufman, M. (2006). Role of adolescent development in the transition process. Progress in Transplantation, 16 (4),

18. Thank you for listening!