Transcript Healthy and Ready to Work - Syntiro

Transition Processes of Medical Homes
HRTW Questionnaire Early Findings
Kathleen B. Blomquist, RN, PhD
Patience H. White, MD, MA, FAAP
HRTW National Resource Center
MCHB Meeting - Medical Home Grantees
Washington, DC, November 29, 2006
www.hrtw.org
HRTW Team
www.hrtw.org
Title V Leadership
Toni Wall, MPA
Kathy Blomquist, RN, PhD
Medical Home
& Transition
Richard Antonelli, MD, MS, FAAP
Patience H. White, MD, MA, FAAP
Betty Presler, ARNP, PhD
Federal Policy
Patti Hackett, MEd
Tom Gloss
Family, Youth & CC Ceci Shapland, MSN
Trish Thomas
Interagency
Debbie Gilmer, MEd
HRTW University
Jon Nelson, MS
www.hrtw.org
The Ultimate Outcome:
Transition to Adulthood
Health Care
Transition
Requires
Time & Skills
for children,
youth, families
and
their Doctors too!
www.hrtw.org
Consensus Statement:
Health Care Transition
American Academy of Pediatrics
American Academy of Family Physicians
American College of Physicians-American Society of Internal Medicine
CONSENSUS STATEMENT calls on physicians to:
• Understand the rationale for transition
from child-oriented health care
• Have the knowledge and skills to facilitate
that process
• Know if, how, and when transfer of care
is indicated
Pediatrics 2002:110 (suppl) 1304-1306
www.hrtw.org
Consensus Statement: Health Care Transition
Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
1. Identify primary care provider
2. Identify core knowledge and skills
3. Maintain an up-to-date medical summary
that is portable and accessible
Pediatrics 2002:110 (suppl) 1304-1306
www.hrtw.org
Consensus Statement: Health Care Transition
Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
4. Create a written health care transition
plan by age 14: what services, who
provides, how financed
5. Apply preventive screening guidelines
6. Ensure affordable, continuous health
insurance coverage
Pediatrics 2002:110 (suppl) 1304-1306
www.hrtw.org
HRTW Surveys:
Status of Transition,
2006
STATES
Title V CYSHCN
= 40
Medical Homes
= 30+
practices/17states
HOSPITALS NATIONWIDE
Shriners Hospitals = 20
NACHRI Hospitals
www.hrtw.org
= 18
HRTW Surveys: Status of Transition
Distribution
AAP’s Center for Medical Home Initiatives
mailing lists:
- Medical Home Learning Collaboratives
- CATCH grantees for past 5 years
- Medical Home Projects
- MCHB Integrated Services Grants
- AAP Listservs
- LEAHs
www.hrtw.org
2006
HRTW Questionnaire for
Medical Homes
• Sections:
–
–
–
–
–
Policies and Practices
Relationships with Community Resources
Perception of Barriers to Transition
Resources Used
How HRTW and AAP can help
• Items based on all 6 Critical First Steps in
Census Statement
www.hrtw.org
HRTW Surveys: Results -
Summer/Fall 2006
About Those Who Responded
• 28 practices / 17 states
• Most involved with Medical Home projects
• 25 pediatricians, 2 Med-Peds, 1 Family
Knowledge of Consensus Statement
• 57% were familiar
• 11% unsure
• 32% not
www.hrtw.org
1. Primary Care
50%
Have Policy to Transition Youth
- 38% PA: White, Hackett, Turchi & Gatto (N=21)
- 13% RI: Burke, Spoerri, Price, Cardosi,
Flanagan (N=103)
61%
Have practice to whom they refer
- 66% PA: White, et al
RI: difficulty finding adult provider
- 70% no for adolescents
- 51% no for YSHCN
www.hrtw.org
1. Primary Care (con’t)
54% recruit providers
adult primary /specialty
(32% want help)
68% support adult providers
assuming care for YSCHN
(21% want help)
- xx% PA:
White, et al
contacted adult provider
www.hrtw.org
1. Primary Care
(con’t)
93% provide care coordination to
youth with complex conditions
(7% want help)
54% have dedicated staff member
who coordinates transition
- 33% PA: White, et al
www.hrtw.org
2. Core Knowledge & Skills
36%
have forms to support transition
(82% want help)
35%
provide educational materials
regarding transition
(50% want help)
www.hrtw.org
2. Core Knowledge & Skills
(con’t)
61% help youth/families
plan for emergencies
(29% want help)
67% assist with accommodations
school/studying or work
(21% want help)
www.hrtw.org
2. Core Knowledge & Skills
(con’t)
64% promote independence in
health condition management
(25% want help)
57% refer to skill-building
experiences
(32% want help)
www.hrtw.org
2. Core Knowledge & Skills
(con’t)
86% refer to community resources/
public benefits
(11% want help)
Formal referral mechanisms in place:
39%
25%
21%
21%
mental health/counseling
adult subspecialty
adult PCPs
dental
< 15% make formal referral to adult
services
VR, SSI work incentives, school or
college services, recreation, transportation,
attendant care, Centers for Independent
Living, supported living, housing
(about 20% provide information)
www.hrtw.org
2. Core Knowledge & Skills
(con’t)
18% have written policy to discuss
legal issues by age 18
- 71% ask for verbal assent
- 25% ask for written assent
19% PA: White, et al
77%
discuss sexuality
PA: White, et al
www.hrtw.org
Sources of Transition Information
57%
54%
46%
25%
staff transition coordinator
self directed
family to family support
state Title V CSHCN agency
21% used HRTW website (21% unsure)
68% used Medical Home website
(4% unsure)
18% don’t know where to turn
www.hrtw.org
Balancing Life & Health
Youth
Family
Friends
Community
Participation
Personal & Civic
Responsibility
Self
Sufficiency
Employment
www.hrtw.org
Peers
School
Attendance
Self
Advocacy
Independent
Living
Mentors/
Role Models
Other
“Encouragers”
Career
Development
Self-Care
Access to Appropriate use
of Health Care
Wellness:
Physical, Social,
Emotional
3. Portable Medical Summary
40% Make transportable medical
record for some patients
(43% want help)
29%
www.hrtw.org
PA: White, et al
3. Medical Summary to Providers
RI: Burke, et al
• 31% send written summary to adult
providers for adolescents
• 51% send written summary to adult
providers for YSHCN
• 18% communicate directly with adult
provider to assure transition successful
www.hrtw.org
4. Written Health Transition Plan
38% Create individualized
health transition plan
for at least some patients
(39% want help)
4% PA: White, et al
61% Helped write IEP goals:
28%
29%
32%
www.hrtw.org
none
1-5 x in past year
6 or more times in past year
5. Preventive Screening
86% Preventive screening – CYSHCN
32% AAP forms
21% GAPS
18% Bright Futures
18% Guidelines to
Clinical Preventive Services
7% State health department forms
Others – created or adapted forms
45% - PA: White, et al
www.hrtw.org
5. Preventive Screening
65%
(con’t)
Screen to identify
YSHCN who need transition
services
(29% want help)
Assess for transition readiness
PA: White, et al:
www.hrtw.org
23%
of youth
23%
of family
Screen for All Health Needs
• Hygiene
• Nutrition (Stamina)
• Exercise
• Sexuality Issues
• Mental Health
• Routine
(Immunizations, Blood-work, Vision, etc.)
• Secondary Conditions/Disabilities
• Accelerated Aging issues
www.hrtw.org
6. Ensure Continuous Health Insurance
43% assist with planning for
continuous health insurance
during transition
(32% want help)
PA Survey: White, et al
36% discuss insurance planning
18% discuss estate planning
45% discuss long term plans
71% assist with SSI medical
documentation/re-determination
(25% want help)
www.hrtw.org
6. Ensure Continuous Health Insurance
93% want information on coding
for reimbursement for
transition services
71%
www.hrtw.org
PA : White, et al
Self-Rating of Transition Processes
4% Not interested
25% No processes, but interested
32% Beginning stages
18% Working on; about halfway to
where want to be
11% Have transition policy and
processes integrated into practice
62% interested in developing transition processes
PA: White, et al
(need more exact – and can report in same way with HRTW)
www.hrtw.org
Transition Expansion
43% say practice has expanded
transition services in
past 2 years
Staff: nurse transition coordinator, on-site case
manager, social worker, Med-Peds
Formalized assessments/interventions
- Beginning earlier
- Developing referral lists for adult providers
- Developing referral lists for other services including
camps, support groups
www.hrtw.org
Youth/Family Involvement
46% have youth/family involvement
in development of transition
services (PAC, YAC, support groups,
focus groups, anecdotes)
14% have tracked outcomes
(satisfaction with system)
www.hrtw.org
Barriers to Transition
Extremely Important/Important
90% Fragmentation of care among
systems
83% Lack of services for YSHCN who
require supported living
82% Lack of knowledge or linkages to
community resources
82% Lack of staff time
www.hrtw.org
Barriers to Transition
Extremely Important/Important
72% Lack of capacity of adult providers
for care of YSHCN
64% Inability to access adult specialty
care
61% Limited coverage for services by
public/private insurance
www.hrtw.org
Conclusions
• PREPARE YOUTH - Physicians involved
with medical home projects are only
partially preparing YSHCN for transition to
adult providers and expectations
• TECHNICAL ASSISTANCE - Physicians
are asking for help to implement the
Consensus Statement’s Critical Steps
• BARRIERS - The health, insurance,
education, and social service systems
present many barriers to transition of
YSHCN
to adulthood.
www.hrtw.org
Assistance Requested
from HRTW and AAP
• EDUCATION: for training pediatric, family,
internal medicine residents/practitioners to
increase capacity
• TOOLS: Assessment, transition plans, brief
interventions, systems and structures for building
transition into services
• REIMBURSEMENT: Organized system of
payment and responsibility for the population
• RESOURCES: Conferences, websites, sources for
local resources
www.hrtw.org
The Road to Quality Care
for Youth, and their Families:
Transition from Pediatric to adult based care in the US
Patience H. White, MD, MA, FAAP
Washington DC
www.hrtw.org
Guiding Observations: New Directions
Sign Posts: A New community of youth with
SHCN has new expectations for their
future.
New Destinations: New health challenges call
for a new relationship with their
partners in the Health care system
Road Construction: New routes need to be
developed for this new relationship among
youth with SHCN, health care providers, and
the health care system
www.hrtw.org
Societal Context for youth w/o Dx
in Transition
• Parents are more involved-dependency
“Helicopter Parents”
• Twixters = 18-19
- live with their parents / not independent
- cultural shift in Western households, which
typically whenever a member of the nuclear
family becomes an adult, they are expected to
become independent.
• How they describe themselves (ages 18-29)
61% an adult
29% entering adulthood
10% not there yet
(Time Poll, 2004)
www.hrtw.org
Health & Wellness for YSHCN:
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
www.hrtw.org
Research Context on Readiness
for Youth in Transition
• YSHCN have delayed developmental milestones in
psycho sexual and social development compared
to Dutch youth w/o disabilities
• Youth with cancer and ESRD scored much less
than youth with esoph atresia, Hirschprung’s
disease, anorectal malformations
• All Reported less risk behavior
Stam J Adol Health 2006
www.hrtw.org
Pilot Study: 35 Adult Nephrologists
Self report survey on transitioned patients at the 20th Annual
Glomerular Disease Collaborative Network Conference 2005
• Transitioned youth:
- 2% of patients in 95% of the practices
- come with no introduction 25% of the time
- often healthier and survive longer than adultonset patients
• Compared to adult patients:
– seem more passive and less knowledgeable
about their disease and meds
- Have developmental and cognitive challenges
- Seem less adherent with appts and meds
www.hrtw.org
Ferris at al 2005
Are 17 year olds Ready
for Disease self management?
2005 British Study - 77 17 yo youth with JIA:
• 20% NOT self medicating
• 55.8% see Rheumatologist with parents, 26% see
GP independently
• Significant association with independent visits
(p=0.002)
• Majority in mainstream school (76%)
Shaw KL, Southwood TR, McDonagh JE 2005
• Adolescent Rheumatology Transition Knowledge
Questionnaire ART – KQ Sub-optimal!
Median
score = 9 (1 to 15)
www.hrtw.org
AERC Outcome Research
200 youth (ages 12-20)with SHCN & parents
completed the following instruments:
-
CMI
work experience
Demographics
parents perception of work readiness
Results:
• Most youth with SHCN feel future certain
- attitude similar to age mates without disabilities
- delayed in all other
- CMI categories, esp. knowledge of workplace
• Parents think first job experience should be
at age 16 or older
• Parental SES not correlated with CMI
www.hrtw.org
White, 1999
Adolescent Employment Readiness
Center (AERC) Research:
Youth are less interested
in any transition organized
around medical issues
and more interested in a
transition to financial and
social independence.
www.hrtw.org
AERC Context:
Data on Adolescent Work in the USA
• Teens take health risks less if work < 20 hrs/week
(JAMA, 1998)
• Part-time work data:
- essential to future work success(Skurikor 1993)
- most jobs low skill, low pay(US Dept. of Labor)
- focus on hours worked, not skills attained
(Mortimer 1994)
- lack of connection to vocational development
(Skorikov 1997)
• Minority, poor and disabled youth have less work
experience but when work, same hours and
wages attained
www.hrtw.org
RESULTS: Summary of Initial Trends
After 1 Yr in the AERC, active* 13 yr olds:
- more engaged
3x as many 13 yo wanted to join
AERC program than other ages
– had less differences in measurements
compared to age mates w/o disabilities; gap
between norms and participants increased with
age of participants
– made significant improvement compared to
other ages in the intermediate outcome
measures: ACLSA Life Skills, CMI, and Pediatric
QoL
www.hrtw.org
RESULTS: Summary of Initial Trends
• After 3 years in AERC, active*
participants have:
–
–
–
–
–
more education
more paid work experience
more likely to leave SSI ( 3 are off SSI, 3 on their way)
Improved health from youth’s point of view
more likely to have an adult primary care
physician
* Receiving AERC services
ROI of program: 1 youth leaving the SSI rolls
pays for 1 Year of the entire program!
www.hrtw.org
Youth Context in Transition
What would you think a group of
“successful” adults with disabilities
would say is the most important
factor that assisted them in being
successful?
www.hrtw.org
FACTORS ASSOCIATED
WITH RESILIENCE
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/o over protectiveness
Weiner, 1992
www.hrtw.org
FACTORS ASSOCIATED WITH
RESILIENCE
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/o over protectiveness
Weiner, 1992
www.hrtw.org
Association/professional Group
Context: IOM QUALITY MEASURES
The Health care system should be:






Safe
Effective
Patient centered
Timely
efficient
equitable
Crossing the Quality Chasm 2001
www.hrtw.org
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 & free flow of infor
• Safety
• Transparency
• Anticipation of needs
www.hrtw.org
Crossing the Quality Chasm 2001
Consensus Statement:
Health Care Transition
American Academy of Pediatrics
American Academy of Family Physicians
American College of Physicians-American Society of Internal Medicine
CONSENSUS STATEMENT
calls on physicians to:
1. Rationale for transition
2. Knowledge and skills
3. Timing for transfer of care
4. Portable medical summary
5. Health care transition plan by age 14
www.hrtw.org
Pediatrics 2002:110 (suppl) 1304-1306
Medical Context in Transition
The adolescent finds themselves
between two worlds…..
that often do not communicate
www.hrtw.org
Issue
Pediatric
Adult
Age-related
Growth& development,
future focussed
Maintenance/decline:
Optimize the present
Focus
Family
Individual
Approach
Paternalistic
Proactive
Collaborative,
Reactive
Shared
decision-making
With parent
With patient
Service
entitlement
Qualified/eligibility
Non-adherence
>Assistance
< tolerance
Procedural Pain
Lower threshold of
active input
Higher threshold for
active input
Tolerance of immaturity
Higher
Lower
Coordination with
federal systems
Greater interface with
education
Greater interface with
employment
Care provision
Interdisciplinary
Multidisciplinary
# of patientswww.hrtw.org
Fewer
Greater
Medical Context
• Need for more collaboration and less
rhetoric between pediatric and adult
medicine providers
• Cystic Fibrosis Foundation approach as a
model for future research?
www.hrtw.org
Transition Tools:
follow an informed decision making road
• Shared management
• Structured observation
• Doctor visit: Patient role for 15 min visit/ 5Qs
• Medical record
(2: MD communication and portable for youth)
• For Docs: 9 easy questions to plan for a
successful transition process
• Guide for accommodations for post secondary
experiences
www.hrtw.org
“Shared Management” as the Goal
• Consciously not using more common term
“self-management”
• View the highest level of achievement is not
independence but effective interdependence
Kieckhefer 2000
www.hrtw.org
Getting Ready: Shared Decision Making
Provider
Parent
Young Person
Major
Responsibility
Provides Care
Receives Care
Support to Parent
and Child
Manages
Participates
Consultant
Supervisor
Manager
Resource
Consultant
Supervisor
www.hrtw.org
Structured Observation:
Experience an Adult Med Visit
• Pre-appt
- Essential Qs to be asked
- Essential Qs YOU will ask
• Appt:
- Observe (attitudes & approach)
- Create/Offer questionnaire
• Post-appt
- Lessons Learned
- Skills to learn (adult feedback)
www.hrtw.org
Health &….. Doctors OFFICE
• Makes Appts (balance health, fun & school)
• Presents Medical Card
• Prepares Qs to ask/assent to consent
• Learns to keep medical records
• Pay and present co-payments
• Calls in Rx (refills Tues-Thurs)
www.hrtw.org
Tools: Medical Records
• Medical Evidence/Documentation
- qualify for program eligibility
- obtain funding/reimbursement
• One page – Reference Sheet
-
contact info (person, health surrogate, doctors, vendors)
communication / learning
prioritize health issues
medications
- equipment
www.hrtw.org
9 Easy steps to Plan
a Successful Transition
• EXPECTATIONS:
What do you want to be doing in 1-2
years?
Talk with the child/youth as well as their family about
expectations for the youth’s future. Think about the future
in 1-2 year segments.
• TEACH:
What is your health situation; what
medical needs to you have?
re-teach about the health condition and needed services
based on changing cognitive development; provide
prognosis/ natural history data if possible.
www.hrtw.org
9 Easy steps to Plan
a Successful Transition
• OPINION:
What do you think….?
Ask the opinion of your young patients…get their
ideas… respect confidentiality…be open and
honest.. listen and be “askable”… involve in
decision making (assent to consent, give them a sense
of competence)
• CHORES:
Are they doing chores?
Independence skills start with having responsibilities
in the family
www.hrtw.org
9 Easy steps to plan
a Successful Transition
• ATTENDANCE: Have you missed
school? Why?
Support consistent attendance at school which
will later lead to a pattern of consistent
attendance on the job and likely hood of
attendance to post secondary school.
• PLANNING: Do you have a transition
plan? Where will you obtain your
health insurance?
Transition planning is key and more than a
referral-clarify roles for all involved/understand
health insurance
www.hrtw.org
9 Easy steps to plan
a Successful Transition
• PARTICIPATION:
What are your friends in school
doing? What do you do to have fun?
Are you exercising?
Ask about social/ leisure activities and strategize how they can
participate more fully; acknowledge teen lifestyle
• CAREER:
Are you planning to do some
volunteer work? What do you want to
do when you grow up? Do you know
how to get there?
Ask about volunteer opportunities in the community (keep on
work developmental milestones), paid work < 20 hours/week
www.hrtw.org
9 Easy steps to plan
a Successful Transition
• STAY WELL:
Do you know the warning signs to
becoming sick?
Are you eating, sleeping and
exercising to keep your health?
key to being part of the action for all players
(eg HEADS)
www.hrtw.org
Post-secondary: Medical Issues
• Selection of school: Career training with
support services and scholarships.
• Medical supports needed at school, nearby
campus, and plans for emergency and inpatient
events.
• Insurance Coverage (is it adequate and is it one
plan or a patch of plans)
• Modifications: Work Load, Medical Care, and
Proactive Wellness (see table 5 for
accommodations)
• Visit the DSS at the start of school
www.hrtw.org
What is a successful transition?
Youth are able to
• Access health services independently
• Discuss their health condition
• Communicate their health care needs
• Self-manage their care or support is
available
www.hrtw.org
What is a successful transition?
Youth are able to
(con’t.)
• Feel comfortable seeing the doctor alone
• Make health care decisions or support is in place
• Understand when their pediatric practice expects
transition to and what to expect from the adult
health care provider
Young adults
• Have insurance
• Have health care that is developmentally
appropriate – primary, specialty, therapies, AT
www.hrtw.org
What to Do Now for Providers
• Hang up youth and/or disability-cool
posters in the waiting room
• Place a sign about moving to an adult
provider with practice policy clearly stated
• Ask a parent to leave the examination
room so youth can talk directly to their
health care provider
• Create a transition plan
www.hrtw.org
(tools & templates available)
What to Do Now for Providers
• Think about making YSHCN appointments
after school
• Call a family physician/general internist to
consult about your transitioning youth and
providing appropriate adolescent primary
care, then call adult subspecialist
• Apply strategies to improve adherence
• Consider
using 9 easy steps/questions
www.hrtw.org
What to Do Now
for Children and Youth
• Become responsible for a new household chore
• Make a list of questions/concerns you have
about your health that you can give to your
pediatrician
• Call your doctor to make your own appointment
• Call in your refill prescriptions
• Draft your portable medical summary
www.hrtw.org
Bottom line: with or without us- youth and
families get older and will move on…What can
make it easier; do what’s in your control and
support youth to tackle what’s their control.
1. Start early
2. Ask and reinforce life span skills prepare for
the marathon
3. Assist youth to learn how to extend wellness
4. Reality check: Have all of us done the prep
work for the send off before the hand off?
www.hrtw.org
www.hrtw.org
www.hrtw.org
www.hrtw.org
The Ultimate Outcome:
Transition to Adulthood
Kathy Blomquist, RN, PhD
[email protected]
Patience H. White, MD, MA, FAAP
[email protected]
www.hrtw.org