1. Transitioning to adult healthcare
-Define transition and talk about why it is important to plan
-Talk about how providers, parents and patients can work towards transition
Transitioning to adult healthcare
Tressa Dabney, LSW

2. What do we mean when we talk about transition
“the purposeful, planned movement from adolescents and young adults with chronic physical and medical conditions from child-centered providers to adult-oriented healthcare systems.”
“A staged but uninterrupted process starting in adolescence and moving into adulthood”
“a process, not an event”
-Children are not tiny adults. Adult providers are more aware of adult issues, pediatrics is more suited to problems of rapidly developing and changing children
-Most research indicates that steps towards transition should begin at 12, some even say as soon as a child is identified as having any special healthcare need
-Transition is a process, transferring is an event. There is no set age due to the individual nature of health, and the multitude of factors at play. Transitions should be timed for optimal success, and the decision should be collaborative.
-Change is hard! Acknowledging that is important!
(Gawlik, A. & Malecka-Tendera, E. , Schwartz, L.A., Tuchman, L. K., Hobbie, W. L., & Ginsberg, J. P. )

3. Goal of the transition process
Successful engagement in the adult healthcare system in order to receive developmentally and medically appropriate care and facilitate maximum potential and optimal quality of life
-Why cant I stay in pediatric care forever?: Adults receiving care in the pediatric system may not receive developmentally or medically optimal care are more likely to utilize high-cost emergency care
-Transferring can be a difficult time, there are various studies that show many individuals do not successfully land in an adult practice.
-There isn’t a lot of data, but one study in Australia found that 63% of a small sample followed were being followed as recommended in the adult world
Schwartz, L.A., Tuchman, L. K., Hobbie, W. L., & Ginsberg, J. P.

4. Social-ecological system
Timing of transition can be impacted by: healthcare team (what is their policy?); patient (what is their level of readiness?); psychosocial factors (are there any significant life changes?); parent/caregiver/family; timing of school and work; and other environmental factors.
You can think of it this way…
Schwartz, L.A., Tuchman, L. K., Hobbie, W. L., & Ginsberg, J. P.

5. Social-Ecological System
Patient
Healthcare team
Parent/
caregiver/
family
School/work
Psycho-
social factors
-Just a way of saying that transition is complicated. Lots of factors play into it. That is why it is good to start early, and be flexible. Also why providers usually do not have a set age that they transition
-Who are the players – healthcare team, parents, school/work. Psychosocial factors, political, societal, cultural
-Healthcare policy can impact changes in insurance policies and coverage
-Some examples: Changes in relationships, work/school transitions can impact emotional/mental health which can impact your health. Changes in location due to moving away for college could impact transition planning. A healthcare crisis could impact transition – health crisis is not a good time to transition
-All these interactions can impact the movement of the transition process. We want to avoid transitioning care in healthcare crisis (for example)
Political and societal factors/culture
Schwartz, L.A., Tuchman, L. K., Hobbie, W. L., & Ginsberg, J. P.

6. Components of a successful transition: Parents, caregivers and healthcare providers
Co-ordinated
Family centered
Gradual
Occurs in a developmentally appropriate setting
Addresses common concerns of young people and family
Promotes autonomy and flexibility
Process is flexible
-Difference between adult and pediatric care: adult appointments are
1. Shorter, more problem focused, rather than patient centered
2. less follow up, so appointment making and calling to schedule and reschedule are important. They wont track you down.
3. Patient is responsible for reporting medical history, answering questions, and ensuring that all questions are answered. Less defaulting to parents and time spent trying to co-identify areas of concern
Provide Handout 1 -
-There are more resources through REACH and the Turner Foundation for ways to manage and organize medical information
-Tips – bring questions, communicate what you need, bring money for co-pays, plan transportation, sign up for their version of “mychop”

7. Transition Readiness Assessments
Transition assessments can help determine skill strengths and areas to grow:
Transition Readiness Assessment Questionnaire (TRAQ)
Transition Readiness Assessment for Youth with Turner’s Syndrome
content/uploads/2014/02/TS_Transition_Readiness_Assessment.p df
Hand out 2 –
-Look at the catergories
-look at question 1
-look at question 5 – Think about the prep time for making an appointment. You have to know your schedule ahead of time, right? Because they just want to schedule as quickly as possible, so you have to know the times that are best for you, and the times that are bad and have those at hand. Use a calendar
-Look at question 10 – have you had times that you thought something was covered and then gotten a bill? If you don’t already, sharing these experiences or having your child on the phone can help them learn what it means to navigate insurance
Handout 3 -

8. Components of a successful transition: Patients
Knowledge
Self advocacy
Independence
Lifestyle factors
Knowledge:
Know your medical history
Know your medications
Names and dosages
Purpose
Side effects
Pharmacy – local vs. mail, 30 vs 90 day supply?
Allergies
Effective or not?
-Know your insurance information
Self Advocacy:
What are ways to increase your role in management of your condition?
Let your family and healthcare team know you are motivated to become more involved!
Keep a list of questions to ask during visits
Speak up during medical decision making
Voice concerns about how your condition impacts school, work, social life
Pay attention when your family addresses potential issues with insurance
Independece:
With knowledge and motivation to be more involved, you can begin to increase healthcare independence
You can be the one to describe your symptoms at visits
You can communicate with your team between visits – sign up for MyCHOP
You can take increased responsibility for medications
Remember to take them
Recognize when medication supply is low
Call pharmacy for refills
You can take an active role in scheduling visits
Life style: There are many health factors to consider when living with a chronic diagnosis such as
Smoking
Illicit drugs
Diet
Exercise
Fertility
Sexuality
Think about how to manage priorities
You want to continue to enjoy other parts of your life that matter to you while staying on top of managing your condition

9. Transitioning to Adult Healthcare
Discovering
Learn about your provider’s approach to transition
Tracking
Know your own health information
Preparing
Learn to manage your own health care
Discovering: Meeting with your medical provider alone
Asking your medical team about transition
Create goals around learning about the various components of medical care*
Tracking: Organize and keep all documentation from doctors visits, insurance companies
Find a tracking system that works for you to remember to take medication, keep appointments: phone alarms, calendars etc.
Make a check list for everything to bring to appointments (copay, insurance card, and a list of questions, notes of any changes in health)
Preparing: Link transition tasks to other milestones* (e.g. your child is going away for a long weekend. You can make part of the preparation: carry and understanding how to use their insurance card.)
Practicing adult skills in the pediatric setting

10. Transitioning to Adult Healthcare
Planning
Get Ready for adult health care
Transferring
Make the change to an adult provider
Completing
Provide feedback
Planning –
-after 18, written permission is necessary for anyone to have access to your medical information
-learning about your health insurance, any changes to expect after 18
-Getting referrals to doctors
-College planning if applicable
Transferring – sending medical records to your new provider. Get recommendations for adult providers. Discuss with your pediatric provider if there is anything else that the adult provider should know about you.
Completing – give your pediatric provider feedback! What could have helped? What do you appreciate?

11. Support your child in transitioning to adult healthcare
By combining transition skills goals to other developmental skills goals, you can ease the process.
Process can start as early as 12, or even at diagnosis.
Find out more about developmental tasks and transition here:
resources

12. Health Insurance
Know current insurance – can I stay on my parent’s insurance until 26?
Know if you qualify for state insurance past
Apply through the ACA portal:
You might qualify for insurance through colleges or employers
Brining it together (Video):
illness-health-insurance

13. brining it all together
Read some real world experiences of those who have, or are transitioning, here:

14. REACH Program REACH program at CHOP
Workshops and sessions dedicated to transitioning to college, navigating the adult healthcare system, and more
Mentorship programs connecting graduate and undergraduate students with high school students with special healthcare needs
REACH mentors, REACH for college, REACH for independence

15. Sources http://www.gottransition.org/youthfamilies/index.cfm
program/health-resources
program
Sakakibara, Hideya. (2017, 2/17). Transition of women with turner syndrome from pediatrics to adult health care: Current situation and associated problems.

16. Sources
Pai, A. L. H. & Ostendorf, M. H. (2017, 3/5). Treatment adherence in adolescents and young adultsaffected by chrnoic illness during the health care transition from pediatric to adult health care: A literature review.
Gawlik, A. & Malecka-Tendera, E. (2014). Treatment of turner’s syndrome during transition.
Davies, M. C. (2009). Lost in transition: The needs of adolescents with turner syndrome.
Schwartz, L.A., Tuchman, L. K., Hobbie, W. L., & Ginsberg, J. P. (2011). A social-ecological model of readiness for transition to adult oriented care for adolescents and young adults with chronic health conditions.