1. Transitioning from Pediatric to Adult Care Susan M
Transitioning from Pediatric to Adult Care Susan M. Carson RN, MSN, CPNP Nurse Practitioner III Thalassemia Program Children’s Hospital Los Angeles

2. Objectives Understand what transition is Discuss transition models
Information needed for transition
CHLA transition model

3. Transition [tran-zish-uh n, -sish-]
movement, passage, or change from one position, state, stage, subject, concept, etc., to another; change:
the transition from adolescence to adulthood.

4. Good News
1999: Over 90% of children born with Chronic or disabling conditions will survive beyond their 20th birthday.
2009- improvement in survival by 70% in thalassemia patient attributed to MRI technology to assess iron, and enhanced chelation options and knowledge of iron
PREDICTION: Thalassemia patients with optimal therapy ( control of iron and transfusions) can lead near normal life spans

5. Bad News
WE ( and I mean all of us) and not set up to deal with this kind of success!!!

6. Barriers Patients and parents Lack of skilled providers/centers
Rare disorder
Insurance/authorizations
Life….

7. Growing Up
Childhood and adulthood were not factors of age but states of mind.” ― Alex Shakar, The Savage Girl
I’m older today than yesterday, and therefore I must be more mature.” ― Jarod Kintz, 99 Cents For Some Nonsense
“I would have given anything to keep her little. They outgrow us so much faster than we outgrow them. Brian Fitzgerald, talking about his children.” ― Jodi Picoult, My Sister's Keeper

8. From Child to Adult
Many assert that are kids are intellectually growing more quickly then previous generation
Emotionally are more delayed
Many parents more involved
Delay in independent milestones

9. Milestones
Graduating school
College
Work
Moving out
Dating
Marriage
Kids
… and managing your own healthcare!...

10. Where do you get your care from?
Only about 1000 patients with thalassemia major in the US
6 CDC funded Centers plus 3 others.
Many live in states where there are not any centers
Very few adult hematologists have experience with Thalassemia patients
May not offer state of the art care
Access to centers and care need to be considered for any move- be it for college or work.

11. Insurance What kind of insurance do you have?
Is it private or government?
What are the age cutoffs?
21 for CCS
26 for coverage under parents plan
Does it travel?
Will it cover your care where you are now? Where you want to go?
Will it cover your chelators?
Interviewing for jobs: what kind of benefits do they offer?
What are your out of pocket costs?

12. Transition
18 million U.S. adolescents, ages 18–21, are moving into adulthood and will need to transition from pediatric to adult-centered health care.
— U.S. Census Bureau, Current Population Survey, 2013
Different types of transition
Transitioning to an Adult care provider
Transitioning to an Adult model with the same provider
Transitioning to an Adult provider with continued follow up with your thalassemia center

13. What’s the Difference? Pediatric Adult Parents are in charge
Care is monitored by parents and health care providers
Appointments are scheduled
Support services offered for financial and emotional issues
Transportation provided by parents
Parents request information about treatment and outcomes
Care is self directed
Care is self monitored and supported by health care providers
Adult must schedule their own appointment
Adult must seek support services for financial and emotional issues
Must provide own transportation
Must request own information about treatment and outcomes

14. Finding a Provider Ask your current doctor for a referral
Call your insurance company
Check with your local support groups
Call large medical and specialty rehab hospitals and ask for referral line

15. Questions when looking for an Adult provider from Got Transition
Ask the office:  Does the doctor accept your insurance coverage? Is he/she taking new patients?  Is the office accessible (easy to reach and easy to get around inside the building or clinic area)?  What are the office hours? How can the doctor be reached after hours?  How will the doctor exchange information with your specialists?  Will the office be flexible to meet your health needs (allow service dog, schedule visits so you will not miss a meal, or schedule at quiet times if you are sensitive to noise)?

16. Finding a Provider Ask the doctor:
 Is the doctor willing to discuss your health history and special needs with your pediatric doctor?
 Does the doctor currently see patients with health conditions similar to yours?
 At what hospital does the doctor schedule procedures?
 Where did the doctor get his/her medical school and specialty training? Is he/she board certified?
 Does the doctor have any special interests or more advanced training?
Who else is on the team there?? NPs? Pas? RNs? SW?

17. More from Got Transition…
Ask yourself!!!
 Does the doctor listen to your questions or is he/she constantly interrupting you?
 Can the doctor explain information so that you can understand it?
 Does he/she take enough time to answer your questions?
 Does the doctor treat you with respect?

18. Guidelines/Education for a Thalassemia Transition Program
Type of Thalassemia
- Genetics
- Specific genotype and Inheritance
- Non Transfusion Dependent
- Frequency and type of specialty appointments
- Frequency of labs, imaging
- Transfusion Dependent
- Frequency of labs and imaging
- Blood type and antibody status
- Pre transfusion hemoglobin
Frequency and amount of blood received at each transfusion
History of reaction
Iron Overload
- Routine diagnostic imaging (MRI T2*/R2*, SQUID, biopsy, ferritin)
- What do results mean
Chelation
- Available chelators
- history- start date, drugs tried, side effects
current drug, dose, specialty pharmacy name
Complications
Cardiac, Liver, Endocrine, Reproductive, Spleen, Orthopedic, Ophthalmology, Auditory
Past Medical and Surgical History

19. Transition Education Access to Care Making Appointments
- Specialty or other Provider name, contact number, location, frequency, if referral needed
Prescriptions
- Names of all medications, dose and purpose
- How/when to fill
- Pharmacy name, location, contact number, contact person
Insurance
- Name/type of plan
- need for Prior Authorizations/referrals
Primary Care Provider (PCP)
- Need for PCP for non-Thalassemia health issues including immunizations
Emergency Care Plan
- identify contact numbers, location
Transportation
Life Skills
Education Goal
Career Goal
Learning Self-Care
- Disengaging from parent
- Living on own
- Self-care skills
Relationships
- Friends, co-workers, family
Coordinating Chronic Condition with Life
- FMLA
- Scheduling
Thalassemia Resources
Cooley’s Anemia Foundation
- Thalassemia Handbook (Guide to Living with Thalassemia)
- Care Plan
Thalassemia International Federation

20. When should we start? Transition is a process
Emotional, intellectual and physical
Goals for patients, parents and providers

21. It does not start at 18… more like 12-14 ..
Patients
Parents
Meet with their medical team alone in order to ask questions.
Set their own health goals.
Develop independence in managing their health care.
Start encouraging some independence
Mixing their medication
Talk to your child about their health care,
Tell them what you are doing when you are coordinating their care

22. Educate, educate, educate
Providers
Educate, educate, educate
About their disease, their health, what happens, needs to happen and why
Ask, ask, ask
About their hopes, dreams, goals, fears
Their friends and peers
About school, relationships, risky behaviour

23. CHLA Transition Goals
Even though we’re a children’s hospital, we want to treat our older patients like adults. By the time they turn 20, we will:
Work with our patients to find them an adult primary care doctor, although we may continue to see them for their blood related health care needs.
Create a partnership with the new adult primary care doctor by giving them the patient’s healthcare summary, medical records, and communicate with them about the patient’s unique needs.
Help our patients find an adult health care facility in case they need to be hospitalized in the future.

24. 18 - The Magic Number Patients are legally adults
Ability to consent or refuse their own treatment
Can still be admitted at CHLA.
Health care team cannot discuss treatment with parents or other family members unless written permission obtained
Varying degrees of family involvement
Will get signed agreement if permission granted to talk to family members.
If the patient has a condition that keeps them from making health care decisions on their own, we encourage families to consider supported decision-making, which we can help with.

25. 21- not so magical… No longer eligible for CCS
Must apply for GHPP
No longer eligible to be admitted to CHLA
We have been able to grandfather in our adult patients for transfusions still in our Infusion center- insurance permitting

26. One Model of Transition:
A network of adult providers the Center has relationships with
Adult Patient has a primary Adult hematologist who orders their transfusion and chelation
Patient comes to a Thalassemia Center 1-2 x/year for a Comprehensive Evaluation including MRI
Collaboration between patient, adult provider and thalassemia center
Support for adult provider

27. Summary
Transition is a process
It will be different for every patient
It will be stressful
It will be complicated
It can be exciting
You are not alone

29. Contact Information.
Susan M. Carson
4650 Sunset Blvd
Los Angeles, CA
90027