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					Transitions: Growing Up Ready to Live!
S2040-S2129: Helping Adolescents with Special Health Care Needs Grow up
                            and Move On


                                                Transition Overview:
                                                         Policy, Data,
                                                   Practice & Trends



                                       Nancy Murphy, MD, FAAP, FAAPMR
                                        University of Utah, Salt Lake City

                                           Patience White, MD, MA, FAAP
                               Health and Ready to Work National Center,
                                                         Washington, DC

                                                                  AAP NCE
                                                               October 2008
            Faculty Disclosure Information

    In the past 12 months, we have no relevant financial
 relationships with the manufacturer(s) of any commercial
    product(s) and/or provider(s) of commercial services
                discussed in this CME activity.

We do not intend to discuss an unapproved/investigative use
   of a commercial product/device in this presentation.
            Seminar Agenda
• Discuss opening questions (10-15 min)
• Review data on transition from multiple points
  of view 15 minutes)
• Small group discussions(20 minutes)
• Report out from small groups (20 minutes)
• Review Tools (10 minutes)
• Wrap up (10 minutes)
          Opening Questions
• What do you remember about your
  adolescent years and health care-when did
  you leave your pediatrician and move to an
  internist?
  Did you leave actively or passively?
• Why did you choose to come to this seminar?
Learning Objectives

1. Define transition and its components

2. Discuss Data, Policy & Trends

3. Share transition approaches in your
  practices
       What is Health Care Transition?
Transition is the deliberate, coordinated
provision of developmentally appropriate and
culturally competent health assessments,
counseling, and referrals.

Components of successful transition

•   Self-Determination
•   Person Centered Planning
•   Prep for Adult health care
•   Work /Independence
• Inclusion in community life
• Start Early
What
does the
Data
tell us?

What do
national
associations
say about
transition?
         IOM QUALITY MEASURES
    Health Care Processes Should Have:
• Care based on continuing healing relationships
• Customization based on patient needs and
  values
• Patient as source of control
• Shared knowledge and free flow of information
• Safety
• Transparency
• Anticipation of needs

                                 SOURCE: Crossing the Quality Chasm 2001
MCHB CORE National Performance Measures

Transition & ………
 1. Family        1.Youth Involvement
2. Screening      2.Secondary Disabilities
3. Medical Home   3.Peds to Adult
4. Health Insurance 4.Extend Dependent Coverage
5. Community      5.Entitlement to Eligibility
6. Transition     6. Inclusion in Community
            HRSA/MCHB Block Grant: NPM #6


Transition to Adulthood

Youth with special health care needs
will receive the services necessary to make transitions to
all aspects of adult life, including adult health care, work,
and independence. (2002)
                                                 SOURCE: BLOCK GRANT GUIDANCE
                                                New Performance Measures See p.43
                                 ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf
A Consensus Statement
Health Care Transitions for Young Adults
With Special Health Care Needs
American Academy of Pediatrics , American Academy of Family Physicians, American
College of Physicians - American Society of Internal Medicine

1. Identify primary care provider

2. Identify core knowledge and skills

3. Knowledge of condition, prioritize health issues

4. Maintain an up-to-date medical summary that is
   portable and accessible

5. Apply preventive screening guidelines

6. Ensure affordable, continuous health insurance
   coverage
What
does the
Data
tell us?



What do youth
say they want
in transition?
                   Youth With Disabilities
           Stated Needs for Success in Adulthood

PRIORITIES:

1 Career development (develop skills for a job and how to find out about jobs
   they would enjoy)

2 Independent living skills

3 Finding quality medical care (paying for it; USA)

4 Legal rights

5 Protect themselves from crime (USA)

6 Obtain financing for school (USA)

            SOURCE: Point of Departure, a PACER Center publication Fall, 1996
           Youth are Talking: Are we listening?

Survey - 1300 YOUTH with SHCN / disabilities


Main concerns for health:
• What to do in an emergency,
• Learning to stay healthy*
• How to get health insurance*,
• What could happen if condition
  gets worse.
                           SOURCE: Joint survey - Minnesota Title V CSHCN Program and the PACER Center, 1995
                                                    *SOURCE: National Youth Leadership Network Survey-2001
                                                                               300 youth leaders disabilities
What would you think

a group of “successful”

adults with disabilities

would say is the most

important factor

that assisted them

in being successful?
          FACTORS ASSOCIATED WITH RESILIENCE
               for youth with disabilities:
               Which is MOST important?

 Self-perception as not “handicapped”

 Involvement with household chores

 Having a network of friends

 Having non-disabled and disabled friends

 Family and peer support

 Parental support w/out over protectiveness
                                               Source: Weiner, 1992
          FACTORS ASSOCIATED WITH RESILIENCE
               for youth with disabilities:
               Which is MOST important?

 Self-perception as not “handicapped”

 Involvement with household chores

 Having a network of friends

 Having non-disabled and disabled friends

 Family and peer support

 Parental support w/out over protectiveness
                                               Source: Weiner, 1992
What
does the
Data
tell us?
How are
youth with
SHCN doing
in
adulthood?
               Outcome Realities

• Nearly 40% of youth with SHCN cannot
  identify a primary care physician
• 20% consider their specialist to be their
  ‘regular’ physician
• Primary health concerns are not being met
• Fewer work opportunities, lower high
  school grad rates and increased drop out
  from college
• YSHCN are 3 X more likely to live on
  income < $15,000


                        CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002
What
does the
Data
tell us?


How prepared
are youth for
managing their
care in the
adult health
care system?
              Internal Medicine Nephrologists (N=35)

          Survey Components                             Percentages
Percent of transitioned patients                 < 2% in 95% of practices

Transitioned pats. came with an introduction
                                                           75%
Transitioned patients know their meds
                                                           45%
Transitioned patients know their disease
                                                           30%
Transitioned patients ask questions
                                                           20%
Parents of transitioned patients ask
questions
                                                           69%
Transitioned Adults believed they had a
difficult transition
                                                           40%
                                   Maria Ferris, MD, PhD, MPH, UNC Kidney Center
What
does the
Data
tell us?



What do Adult
providers say
they want to
assist them in
receiving youth
 Survey of Adult Health Care Providers
          in NH 2008: Results
• Who-180 responses: 81% Fam, 9% internist, 8% NP,
  2% Med-peds
• Communication-57-46% rarely/never received trans summary
  or call. 48% young adult experienced care gap
• Barriers- time, staffing, reimbursement issues inadequate
  support from specialists
• Comfort Level-
   – More- asthma, inc BP, Mental health, DM
   – Less- CF, Chromosome/met disorders, autism, technology dep
• What would Help- 95% written summary and support from
  specialists, 91% want to speak w prior provider, 84% written
  educational info about condition
• When-78% between 18-21 years
What
does the
Data
tell us?
FAMILIES
Natl CSHCN
Survey 2005-06 of
families with
CYSHCN
                 NATL
      RI Data…
CSHCN            13.9

0-5               8.8

6-11             16.0

12-17            16.8

Transition
services         41.2
received
                      NS-CSHCN 2005
        Section 6: Family Centered Care - Transition Qs


         If YES, have they talked with you about having
49.3%
         [CHILD’S NAME] eventually see doctors or
NO
         other health care providers who treat
         adults?



53.8%    Have [CHILD’S NAME]’s doctors or other health
NO       care providers talked with you or [CHILD’S NAME]
46.2%    about his/her health care needs as he/she
YES      becomes an adult?
                           NS-CSHCN 2005
            Section 6: Family Centered Care - Transition Qs

78.7%        Eligibility for health insurance often changes
NO           as children reach adulthood. Has anyone
             discussed with you how to obtain or keep some
             type of health insurance coverage as [CHILD’S
             NAME] becomes an adult?


Never
11.9%        How often do [CHILD’S NAME]’s doctors or other
             health care providers encourage him/her to take
Sometimes    responsibility for his/her health care needs,
16.3%        such as:
Usually      IF 5-11 Years: learning about (his/her) health or helping
23.0%        with treatments and medications?
             IF 12+ Years: taking medication, understanding (his/her)
Always
             health, or following medical advice?
48.7%
What
does the
Data
tell us?
PED
PROVIDERS
AAP/HRTW
surveys of
providers using
AAP consensus
statement
A Consensus Statement
Health Care Transitions for Young Adults
With Special Health Care Needs
American Academy of Pediatrics , American Academy of Family Physicians, American
College of Physicians - American Society of Internal Medicine

1. Identify primary care provider

2. Identify core knowledge and skills

3. Knowledge of condition, prioritize health issues

4. Maintain an up-to-date medical summary that is
   portable and accessible

5. Apply preventive screening guidelines

6. Ensure affordable, continuous health insurance
   coverage
    Two HRTW Surveys: Results 2007-8


About Those Who Responded

• 52 physicians / 26 states
• Most involved with Medical Home projects
• 47 pediatricians, 4 Med-Peds, 1 Family


Consensus Statement- Knowledge

• 50% were familiar
• 6 % unsure
• 42% not
Barriers to Transition *        Medical       NACHRI         States
rated extremely important or    Homes         Hospitals      N=42 of 59
very important (combined)         N=52            N=19       States/
                               in 26 states   in 18 states   Territories
HRTW Questionnaire 2006-2007



Lack of capacity of adult
                                 83%            85%               95%
providers to care for
youth/adults with SHCN

Lack of understanding of
reimbursement eligibility        65%            63%            Not Asked
differences between adults
and children with special
health care needs


Fragmentation of care
                                 87%            73%               89%
among systems providers

Lack of knowledge about or
linkages to community
resources that support youth     85%            58%               50%
in transition
                          Medical      NACHRI       Shriners      State Title V
Health Care               Homes        Hospitals    Hospitals     Agencies
Transition Activities     N=52         N=19         N=20          N=42 of 59
                          26 states    18 states    15 states &   States/
                                       (12%)        Canada        Territories
                                                    (91%)         (71%)

Create an
individualized health
transition plan             34%               43%       25%              50%

Promote health
management, self
care, and prevention        63%               79%       95%              72%
of secondary disab.

Discuss legal
responsibility for          21%               58%     100%               62%
medical decisions and        Written
health records <18.            81%
                             assent
Recruit adult primary
/specialty providers to
assume care of youth        56%               58%       35%              53%
with special needs
   Results: Core Knowledge & Skills

36% have forms to support transition
        (82% want help)

39% provide educational materials regarding transition
        (48% want help)
58% help youth/families plan for emergencies
      (31 % want help)
68% assist with accommodations school/studying or work
       (21% want help)

35% Make transportable medical record for some patients
      (43% want help)
   Results: Core Knowledge & Skills
63% Promote independence in health condition
    management
      (25% want help)
     When youth become 18-writen policy to discuss? 77% no
     Do you seek verbal assent? 81% Written 23%


50% Refer to skill-building experiences
       (35% want help)


33% Create individualized health transition plan for at
    least some patients
    (39% want help)


65% Screen to identify YSHCN who need transition
    services
     (29% want help)
        Results: Overall practice assessment

Rate your practice with regards to transition
 processes in general:
 - not interested 2%
 - not have, interested 29%
 - beginning stages 25%
  - working on policy/processes 19%
 - have policy and processes integrated 13%
  THANK YOU
ANY QUESTIONS?
    Health & Wellness: Being Informed

“The physician’s prime responsibility is the
 medical management of the young person’s
 disease, but the outcome of this medical
 intervention is irrelevant unless the young
 person acquires the required skills to
 manage the disease and his/her life.”

             Ansell BM & Chamberlain MA. Clinical Rheum. 1998; 12:363-374
 How do have systems change so that the
 rookie learns the rules of the game and we
 leave no knot untied between pediatric
 and adult healthcare?

• Research states policies and procedures among
  stakeholders are essential so that
  – Ensures consensus
  – Ensures mutual understanding of
    the processes involved
  – Provides structure for evaluation
    and audit
                       Next Steps
• Form groups of 8-10
• Identify recorder and reporter
• Discuss
  1. How many of you have a policy in your practice about when
  youth will be transferred to adult practices?
  2. If yes, what does it say? Is it posted for families and youth
  to see?
  3. Craft examples of such a policy and how you will/did
  develop such a policy
  4. What are the top 3 practice processes that would help you
  the most?
• Report out
           Transition Policy Template
• Definition-what is it? See transition definition of Soc
    Adolescent Med/BMCH
•   Outcome
•   Timeline- age of initiation and explanation of exceptions
•   Components- see AAP consensus statement
•   Practice Processes
•   Evaluation- PDSA cycle
Nancy Murphy, MD, FAAP, FAAPMR
nancy.murphy@hsc.utah.edu
    Patience White, MD, MA
     pwhite@arthritis.org
http://www.championsinc.org

				
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