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

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 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 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 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

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 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

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

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

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.  

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.

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: 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

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 Scarson@chla.usc.edu