Transcript National Center for Medical Home Implementation

Medical Home in Pediatrics:
The HOW TO Webinar Series
brought to you by the National Center for Medical Home Implementation
How To Engage Youth in
their Health Care
Kitty O’Hare, MD, FAAP
Teresa Nguyen
Justin Thompson
February 27, 2013
Disclosures
We have no relevant financial relationships with the
manufacturers(s) of any commercial products(s) and/or
provider of commercial services discussed in this CME
activity.
I do not intend to discuss an unapproved/investigative use
of a commercial product/device in my presentation.
Webinar Objectives
By the end of this webinar, the participant will be able to:
 Review the importance of empowering all youth in their health
care using a strength-based approach
 Describe promising practices for pediatric providers to empower
youth, especially during the process of transition from pediatric
to adult care
 Describe the impact of empowerment on positive health
outcomes and successful transition from pediatric to adult care
Case Presentation: Maria
20 yo Hispanic female h/o Type 1 diabetes presents to
emergency room with sugars out of control.
Lost to follow-up since age 18 after she lost health insurance
and stopped seeing her pediatrician.
She has weight loss and 2 years of amenorrhea.
She works part-time, but has difficulty maintaining her job since
she rarely “feels well.”
Case Presentation: Maria
Is there a better way to
get Maria out of
pediatrics…
… and into adult-oriented care?
Definition of Transition
“The purposeful, planned movement of adolescents
and young adults with chronic physical and medical
conditions from child-centered to adult-oriented
health care systems.”
-Society for Adolescent Medicine
Goals of Transition and Empowerment
 Transfer of care from child-oriented to adult-oriented
services with uninterrupted services
 Promote autonomy, self-care and self-determination
 Allow assumption of adult roles and responsibilities when
appropriate
 Maximize life-long functioning and potential
Should we be transitioning and empowering
everyone?
“Adults, including those with childhoodacquired chronic conditions, should receive
adult-oriented primary health care from
appropriately trained and certified providers,
in adult health care settings.”
-Society for Adolescent Medicine
Why not stay with the pediatric provider?
Expertise in adult medical care
Long-term effects of childhood diseases
Promote independence and autonomy
The population of adults with complex
pediatric conditions continues to grow!
There are many barriers
System
Providers
Communication
70%
Did your physician discuss with you –
60%
50%
53%
62%
55%
40%
30%
34
24%
20%
10%
0%
How health
needs may
change
Health
insurance
coverage
Health related
transition
services
School
Transition Plan
Received 3
Transition
Services
MCHB Core Outcome #6
The National Survey of Children with Special Health Care Needs, Data Resource Center for Child and Adolescent Health. Retrieved on February 18,
2013 at http://www.childhealthdata.org/learn/NS-CSHCN.
Patient-Centered Medical Home
A Team Effort
Strengths-Based Care
Providing strength-based care requires that pediatricians do the
following:
• ask questions,
• provide feedback,
• use a framework or checklist to identify the patient’s
assets,
• share decision-making, and
• ask parents and the patient for feedback.
Empower: to promote the self-actualization or influence of
Parent-Youth Interaction
 How comfortably do the youth and parent interact,
both verbally and nonverbally?
 Who asks and answers most of the questions?
 Does the youth express an interest in managing his
own health issues (including youth who have special
health care needs)?
Parent-Youth Interaction: Teresa
• Both parents are immigrants from Vietnam. I was born in
the U.S.
• I became an early self-advocate due to language barrier; my
parents spoke Vietnamese and understood minimal English
• In healthcare this meant (at 16 yrs.):
• Scheduling my own Doctor’s appointments
• Interpreting
• Becoming a key decision maker in important healthcare
decisions equally with my parents
• Begin transition conversation
Taking Charge of Healthcare: Justin
• Transition began around the age of 14.
• Mom would take me, but would not go into the room.
• Began going completely on my own at 16.
• Before the appointment, parents would go over the visit with
me.
Surveillance of Development: Does the Youth…
 Demonstrate physical, cognitive,
emotional, social, and moral
competencies
Display a sense of selfconfidence, hopefulness, and wellbeing
 Engage in behaviors that promote
wellness and contribute to a
healthy lifestyle
 Demonstrate resiliency when
confronted with life stressors
 Form a caring, supportive
relationship with family, other
adults, and peers
 Engage in a positive way in the life
of the community
 Demonstrate increasingly
responsible and independent
decision making
Building Resilience
 Develop self-perception
as not handicapped
 Nurture disabled and
non-disabled friends
 Involve in household
chores
 Seek family and peer
support
 Encourage parental
support without overprotectiveness
Six Core Elements of Health Care Transition
#1: Transition Policy
“Martha Eliot Health Center is committed to a smooth transition from
childhood to adolescence to young adulthood. This process
requires collaboration between patients/families and the medical
team. By age 14 years, all youth in our practice will begin
transition planning by moving to an adolescent medicine care
model. By age 18 years, all youth will participate in their own care
as adults, with modifications as needed for youth with special
needs. By age 22 years, all patients will receive primary care from
an adult medicine provider.”
#1: Transition Policy
• Post in patient areas
Dissemination
• Put into welcome packet
• Include in the office brochure
• Educate staff about privacy, consent
procedures
Implementation
• Remind families early (ages 12-14
years)
• Remind families often
#2: Transitioning Youth Registry
#2: Transitioning Youth Registry
• Especially critical for CSHCN
– But helpful for all transitioning youth
• Track by diagnosis, progress
• Establish a timeline
#3: Transition Preparation
Medical Needs
Non-Medical Needs
 Patient has opportunity to
talk to provider alone
 Patient is developing selfefficacy
 Review of disease-specific
guidelines
 Education-> vocation
 Review of age-specific
guidelines
 Checklist in visit notes
 Plans for independent living
 Plans for adult support
services
 Legal services
#3: Transition Preparation - Assessment
#3: Transition Preparation – EMR Checklist
Ages 12 to 14 years
[] Patient can name their chronic conditions
[] Patient can name their allergies
[] Patient can name their medications
[] Patient has attended an IEP meeting
[] The IEP includes a transition plan
[] Family has started to keep their own health record
[] Patient is assigned household chores and participates in
family life
[] Patient has hobbies and engages in exercise
[] Family has discussed sexuality
[] Family is working with patient to help them live
independently
Ages 15 to 17 years
[] Patient can describe how their chronic conditions impact their
health
[] Patient can describe what each medication is for
[] Patient can take their medication without supervision
[] Patient has tried to refill a medication
[] Patient is carrying their insurance card
[] Patient has scheduled a doctor's appointment on their own
[] Patient is updating their own health summary
[] Patient is investigating adult doctors for primary and specialty
care
[] Patient/family are investigating secondary education,
employment or vocational opportunities
[] Family has begun guardianship applications
Age 18 years +
[] Signed HIPAA form (Patient or Guardian) is in EMR
[] Patient has selected adult doctors for primary and specialty
care
[] Patient can refill their medication
[] Patient has insurance/SSI benefits
[] There is a formal plan in place for adult living/vocation
#4: Transition Planning
Update
problem
lists, med
lists
Directed
referrals to
adult
specialists
Directed
referral to
adult primary
care
Don’t
forget
mental
health!
#4: Transition Planning – Action Plan
#4: Transition Planning – Portable Medical Summary
#4: Transition Planning – Emergency Plan
#5: Transfer of Care
Complete
records
Portable
Summary
Direct
Communication
#5: Transfer of Care
Refill all prescriptions and DME supplies
Ensure equipment is in working order
Plan a final visit when patient is well
#6: Completion
 Review of the adult
model of care
 Opportunity for
feedback
Acknowledgements
 Patti Hackett-Hunter, Med
 Niraj Sharma, MD MPH
 Richard Antonelli, MD
 Additional Resource: The Spina Bifida Experience: Managing Your
Own Medical Care from the National Center on Birth Defects and
Developmental Disabilities (Video)
Got Transition?
 HRSA/MCHB funded collaborative
 Tools to implement health care
transition
www.gottransition.org
 Links to other transition sites
 Free webinars
Teresa
• 24 years old
• Graduated from Univ.
of Colorado Boulder in
2011.
• Has worked with Got
Transition in the past
with webinars.
• “Halfway” transitioned to adult
care in D.C. for an internship.
• Not yet transitioned in home
town-Denver, CO.
• Has worked closely with with the
Colorado Medical Home
Initiative, and served on the
Medical Home Youth Leadership
Council.
Teresa: My Health Care Experience
•
•
•
•
•
•
The “Transition to Adult Care” conversation started when I was 17 or 18
years old
Many aspects of early advocacy helped me feel comfortable with managing
my own health care
For me factors of a successful transition include:
• Provider/Specialist/Insurance matchup
• Provider is in area accessible by public transportation
• Best possible health condition for transition
My “taste” of transition happened when I moved to DC for an internship.
Things I loved:
• New Provider took time with me during our consult appt.
• Portable Medical Summary
• Being put in touch with other providers that have expertise in
transitioning special needs patients.
• Knowing that there’s an option to always contact my previous provider.
Transition is still in-the-works in Denver, CO for me
Justin: The College Years
• Made to transition to making all of my appointments.
• Primary doctors were still in hometown.
• Was not comfortable or equipped to find new primary
care physicians.
• Medical Emergency.
Early Adulthood
• A move for a job forced me to find new doctors.
• Transition between insurance was eased by job.
• Company insurance changed during employment.
• Insurance forms can be intimidating.
Questions?
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