Transitions: Growing Up Ready to Live S2040S2129: Helping Adolescents with Special Health Care Needs

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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

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Faculty Disclosure InformationIn 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.
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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)

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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?

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• Learning Objectives
• Define transition and its components 
• 2. Discuss Data, Policy Trends
• 3. Share transition approaches in your practices 

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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

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What does the Data tell us? What do national
associations say about transition?
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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

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MCHB CORE National Performance Measures

• Transition
• 1. Family
• 2. Screening
• 3. Medical Home
• 4. Health Insurance
• 5. Community
• 6. Transition

• Youth Involvement
• Secondary Disabilities
• Peds to Adult
• Extend Dependent Coverage
• Entitlement to Eligibility
• 6. Inclusion in Community

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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

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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

• Identify primary care provider
• Identify core knowledge and skills
• Knowledge of condition, prioritize health issues
• Maintain an up-to-date medical summary that is
  portable and accessible
• Apply preventive screening guidelines
• Ensure affordable, continuous health insurance
  coverage
• Pediatrics 2002110 (suppl) 1304-1306

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What does the Data tell us? What do youth
say they want in transition?
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Youth With Disabilities Stated Needs for Success
in Adulthood

• PRIORITIES
• Career development (develop skills for a job and
  how to find out about jobs they would enjoy)
• Independent living skills
• Finding quality medical care (paying for it USA)
  
  
• Legal rights
• Protect themselves from crime (USA)
• Obtain financing for school (USA)

SOURCE Point of Departure, a PACER Center
publication Fall, 1996
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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

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• What would you think
• a group of successful
• adults with disabilities
• would say is the most
• important factor
• that assisted them
• in being successful?

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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

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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

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What does the Data tell us? How are youth
with SHCN doing in adulthood?
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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 lt
  15,000

CHOICES Survey, 1997 NOD/Harris Poll, 2000 KY
TEACH, 2002
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What does the Data tell us? How prepared are
youth for managing their care in the adult health
care system?
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Internal Medicine Nephrologists (N35)
Maria Ferris, MD, PhD, MPH, UNC Kidney Center
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What does the Data tell us? What do Adult
providers say they want to assist them in
receiving youth w SHCN?
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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

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What does the Data tell us? FAMILIES Natl
CSHCN Survey 2005-06 of families with CYSHCN
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RI Data
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• NS-CSHCN 2005
• Section 6 Family Centered Care - Transition Qs

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• NS-CSHCN 2005
• Section 6 Family Centered Care - Transition Qs

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What does the Data tell us? PED
PROVIDERS AAP/HRTW surveys of providers using AAP
consensus statement
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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

• Identify primary care provider
• Identify core knowledge and skills
• Knowledge of condition, prioritize health issues
• Maintain an up-to-date medical summary that is
  portable and accessible
• Apply preventive screening guidelines
• Ensure affordable, continuous health insurance
  coverage
• Pediatrics 2002110 (suppl) 1304-1306

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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

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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)

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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)

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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

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THANK YOU ANY QUESTIONS?
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Health Wellness Being Informed

• The physicians prime responsibility is the
  medical management of the young persons 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 12363-374

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• 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

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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

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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

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• Nancy Murphy, MD, FAAP, FAAPMR
• nancy.murphy_at_hsc.utah.edu
• Patience White, MD, MA
• pwhite_at_arthritis.org

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http//www.championsinc.org