Transcript Transitioning from Pediatric to Adult Care

Transitioning from Pediatric to Adult Care
Susan M. Carson RN, MSN, CPNP
Nurse Practitioner III
Thalassemia Program
Children’s Hospital Los Angeles
Objectives
• Understand what transition is
• Discuss transition models
• Information needed for transition
• CHLA transition model
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.
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
Bad News
• WE ( and I mean all
of us) and not set up
to deal with this kind
of success!!!
Barriers
• Patients and parents
• Lack of skilled providers/centers
• Rare disorder
• Insurance/authorizations
• Life….
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
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
Milestones
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Graduating school
College
Work
Moving out
Dating
Marriage
Kids
… and managing your
own healthcare!...
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.
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
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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?
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
What’s the Difference?
Pediatric
Adult
•
•
Parents are in charge
•
Care is monitored by parents and •
health care providers
•
Appointments are scheduled
•
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Support services offered for
financial and emotional issues
Transportation provided by
parents
Parents request information
about treatment and outcomes
•
•
•
•
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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
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
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)?
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?
•
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?
Guidelines/Education for a
Thalassemia Transition Program
Education
Type of Thalassemia
- Genetics
- Specific genotype and Inheritance
- Non Transfusion Dependent
- Frequency and type of specialty appointments
- Frequency of labs, imaging
- Transfusion Dependent
- Frequency and type of specialty appointments
- 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
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
www.thalassemia.org
- Thalassemia Handbook (Guide to Living with
Thalassemia)
- Care Plan
Thalassemia International Federation
www.thalassaemia.org.cy/
When should we start?
• Transition is a process
• Emotional, intellectual and physical
• Goals for patients, parents and providers
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
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
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.
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18 - The Magic Number
•
•
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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.
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
One Model of Transition:
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A network of adult providers the Center has relationships with
•
Adult Patient has a primary Adult hematologist who orders their
transfusion and chelation
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Patient comes to a Thalassemia Center 1-2 x/year for a Comprehensive
Evaluation including MRI
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Collaboration between patient, adult provider and thalassemia center
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Support for adult provider
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
Contact Information.
Susan M. Carson
4650 Sunset Blvd
Los Angeles, CA
90027
323-361-4132
[email protected]