Transcript Emerging Adulthood: Facilitating the Transition to

Emerging Adulthood:
Facilitating
theTransition
Transition to
Optimizing
Adult-Centered Medical Care
Kitty O’Hare, MD
Kitty O’Hare, MD
Internal Medicine-Pediatrics Residency Program
Brigham & Women’s Hospital/Boston Children’s Hospital
Disclosure of Financial Relationships
I have no relationships with any entity
producing, marketing, re-selling, or distributing
health care goods or services consumed by, or
used on, patients.
Case: Maria
•
17-year-old with cerebral palsy, epilepsy, &
learning disabilities
•
Continues to see her 8 pediatric specialists
•
Has not seen her primary care doctor in 3 years
•
Does not know the names of her medications or
how to take them
When Should Maria’s
Transition to Adulthood Start?
AAP, AAFP, and ACP advise active
planning by age 12-14 years
AAP, AAFP, ACP-ASIM. A consensus statement on health care transitions for young adults with
special health care needs. Pediatrics 2002; 110 S3: 1304-6
Definition of Adult 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
SAM. Transition to Adult Health Care for Adolescents and Young Adults With Chronic Conditions. J Adol Health 2003;33:309-11.
T
ransition
t
ransfer
Should we be transitioning everyone?
“Adults, including those with
childhood-acquired chronic conditions,
should receive adult-oriented primary
health care from appropriately trained
and certified providers, in adult health
care settings.”
-Society for Adolescent Medicine
Transition Will Help Maria to
Build Resilience
• Self-perception as not handicapped
• Involvement in household chores
• Disabled & non-disabled friends
• Family and Peer Support
White, Patience. Transition: a future promise
for children and adolescents with special
health care needs and disabilities. Rheum Dis
Clin North Amer. 2002; Vol 26. No 3.
• Parental Support without over-protectiveness
Rimmer, J. A., Wang, E., Yamaki, K., & Davis, B. (2009). Documenting disparities in obesity and disability.
FOCUS Technical Brief (24). Austin, TX: SEDL.
Kansas
Vermont
Utah
New Hampshire
Montana
South Dakota
Nebraska
Wyoming
Minnesota
Idaho
Massachusetts
North Dakota
Connecticut
Illinois
Alaska
Iowa
Virginia
Wisconsin
Indiana
North Carolina
Rhode Island
Maine
Colorado
New Jersey
Tennessee
Washington
West Virginia
Michigan
South Carolina
Oklahoma
Missouri
Pennsylvania
New York
Mississippi
Delaware
California
Hawaii
Kentucky
Florida
Maryland
New Mexico
Arizona
Ohio
Oregon
Texas
Alabama
Georgia
District of Columbia
Louisiana
Arkansas
Nevada
State-Level Variability in Transition Outcome
National Survey of CSHCN 2009-2010
% Successfully Achieving Transition Outcome
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
www.childhealthdata.org
Are We Providing Transition Services?
Parental Viewpoint
100%
90%
78%
80%
70%
40%
30%
20%
HCP Discussed Adult Health Care
Needs
59%
60%
50%
HCP Discussed Shift to Adult
Provider
44%
35%
40%
Anyone Discussed Health
insurance
HCP Usually/Always Encourages
Youth to Take Responsibility
Overall Core Outcome
10%
0%
McManus MA et al. Pediatrics 2013; 131:1090-1097
Are We Providing Transition Services?
Youth Viewpoint
70%
D
60%
50%
40%
53%
62%
55%
30%
34%
24%
20%
10%
0%
How health
needs may
change
Health
insurance
coverage
Health related
School
transition
Transition Plan
services
Received 3
Transition
Services
Sawicki GS, et al. Receipt of health Care Transition Counseling in the National Survey of
Adult Transition and Health. Pediatrics 2011; 128(3): e521-e529.
2009/10 National Survey of Children with Special Health Care Needs
MCHB Core Outcomes and Key Indicators; www.childhealthdata.org
Barriers for Maria and her Family
System-Based
•
•
•
•
Difficulty finding providers to
accept care
De-centralization of care
Lack of communication
between adult medicine &
pediatrics
Challenges with SSI, Medicaid
Patient Knowledge
•
•
Overall maturity
Ability to participate in care
Resistance to Change
•
•
Familiarity with the
pediatrician
Need to maintain control/
Perception adolescent cannot
handle condition
Reiss JG, et al. Health Care Transition: Youth, Family, and
Provider Perspectives. Pediatrics 2005;115;112.
Adolescent Medicine Training in
Pediatric Residency Programs
14%
37%
49%
Chronic Illness
17%
Not Covered
33%
Somewhat
Covered
Well Covered
50%
Not Covered
Somewhat
Covered
Well Covered
Handoffs to Adult Care
Fox HB, et al. Adolescent Medicine Training in Pediatric Residency Programs. Pediatrics 2010; 125:165-72.
Likelihood to Provide Care after Residency
Patel MS and O’Hare K. Residency Training in Transition of Youth with Childhood-Onset Chronic Disease. Pediatrics 2010; 126 S3:S1903.
Six Core Elements of
Health Care Transition
1
Transition Policy
2
Transitioning
Youth Registry
3
Posted
Staff /Family/CY Informed
4
Transition Planning
5
Transition &
Transfer of Care
Health Care Transition Plan
Portable Medical Summary
Identify: 12-17, 18-21, 22-26
Transfer Checklist, EMR
Summary Med. Record
Transition
Preparation
Transition
Completion
Teach & Track Skills
6
3 months post/followup
1. Maria is informed of her
provider’s Transition Policy
“At Pediatric Physiatry Associates, we provide
age-appropriate care for children and
adolescents. By age 14 years, we encourage our
patients to spend some time alone with their
provider. By age 22 years, our patients will
transfer to an adult facility.”
2. Maria is entered into her
physiatrist’s Transition Registry
3. Maria’s Transition Readiness is
assessed at least once per year
Transition Readiness Assessment Questionnaire (TRAQ)
4. You assist Maria with
Transition Planning
Medical
Educational
Vocational
Independent
Living/ Home
Care
Guardianship
Insurance/ SSI
Financial
Planning
Advanced
Directives
Relationships/
Sexuality
5. You assist Maria with
Transfer of Care
Complete
records
Portable
Summary
Direct
Communication
6. You invite Maria to participate in
Transfer Completion
•Focus Groups
•Youth/Family Advisory Board
•Transition Feedback Survey
Maria Transitions Successfully!
1.
Informed of your office transition policy
2.
Entered in your high risk registry
3.
Assessed for transition readiness
4.
Participated in drafting an action plan
5.
Worked with you to identify adult providers
and transfer information
6.
Graduated to adult care
Questions?
Kitty O’Hare, MD
Director of Transition Medicine for Primary Care,
Weitzman Family BRiDGEs Young Adult Program,
Boston Children’s Hospital
[email protected]
Transitions in PM&R Practice:
Beginning Adult Physiatric Care
Jason Frankel MD
Instructor / Staff Physiatrist
Spaulding Rehabilitation Hospital
Disclosures
I have no financial disclosures
Challenges for Adult Physiatrists
• It takes time to efficiently communicate and assimilate past
history and procedures.
• There is no special time to communicate with other
practitioners.
• It takes time to communicate what adult care can do for a
patient.
- Expectations do not always match!
Challenges for Patients
• Patients and caregivers are not always sure how to
communicate to adult practitioners about the import of special
needs.
• There is a knowledge gap amongst some adult practitioners.
• Patients sometimes unprepared for differences in how care is
delivered.
Challenges for Communities
• Many communities lack capacity and information to help,
incorporate and educate patients and caregivers.
– Things really change when school is over!
• What is the ideal formula to combine the tools we have and
continue to develop?
– Research needed!
Two Examples
• Patient 1 is a 20 year old male with spastic diplegia, who has
been maintained with phenol and botulinum injections for
many years by a pediatric colleague.
– Injections have always been done under general anesthesia.
• Patient 2 is a 24 year old female with spastic diplegia, who
presents with gradually worsening cervical and low back pain
since her late teenage years.
– Her former pediatric physicians feel adult physiatry will have more
to offer. They send all her clinic and surgical records.
The “CHB to SRH” Model
• Potential candidates for transition to adult care are
identified in mid-adolescence.
– Our general consensus in joint meetings has been to begin
discussion of the transition years in advance.
• CHB clinic coordination staff communicate with
counterparts at SRH.
– Info is transferred, including primary care, surgical specialty,
physiatry and procedure notes.
– Insurance pre-auth is obtained.
• An initial appointment is set.
The First Meeting
• This is never a procedural visit.
– Frequently, the patient will have just had botulinum or phenol
injections with Dr. Nimec or Quinn.
– Some patients do not require frequent procedures but will
have ongoing equipment and mobility needs.
• I gain a general sense of the nature and causes of the
condition, and other health concerns.
– I also try to tune in on activities that are painful or pose the
greatest difficulty to accustom patients to talk about these
uncomfortable issues.
• I perform my own exam and determine what plan of care I
think makes sense.
Planning for Future Appointments
• I then go back to see if my impressions gel with care others
have provided in the past.
– Do prior botulinum/phenol injections look similar, and how
frequently were they performed? Has care mostly been to
maintain equipment? Are there likely to be ongoing therapy
needs?
• If procedures are needed, I exhaustively describe how the
injections are done without general anesthesia and answer
questions.
– We discuss how procedures may be subtly altered for greater
comfort.
• If no procedures, we determine what follow up interval
makes sense.
– Depends upon equipment needs, therapies prescribed and
progress.
Psychosocial Considerations
Impacting Transition from
Pediatric to Adult Medical
Care
Elena Daha-Slavkova, LCSW
October 3, 2015
Disclosures
I have no financial disclosures.
Consensus Statements
“The goal of transition in health care for young adults with
special health care needs is to maximize lifelong functioning and
potential through the provision of high-quality, developmentally
appropriate health care services that continue uninterrupted as
the individual moves from adolescence to adulthood. Its
cornerstones are flexibility, responsiveness, continuity,
comprehensiveness, and coordination.”
- AAP Consensus Statement
“Health care transition is the process of changing
from a pediatric to an adult model of health care.
The goal is to Optimize health and assist youth in
reaching their full potential. To achieve this goal
requires an organized transition process
…..without disruption in care.”
---GotTransition.org
Transition is a Process, Not an Event
 Transition is a process


Transition begins at birth/point of diagnosis.
Planning should begin as early as possible on
a flexible schedule recognizing the youth’s
increasing independence and capacity to
make choices (White, et al).
Developmental Framework
 Developmental framework considers:



Childhood development/expectations
Development process of coping with illness
(length of time since diagnosis)
Family (especially parents) development and
willingness to allow autonomy
Resource Facilitation
 Identify concrete needs in advance.
 Financial and estate planning to begin in very early
childhood; educational, vocational and guardianship
planning in early adolescence using Medical Home
model to coordinate care. (Cooley, et al).
 Assess readiness of the patient and family to engage
in this process and address any areas that might
present a challenge.

Transition happens over a span of time during which
the patient and family become familiar and comfortable
with the community resources.
Resource Categories
 State/Federal Entitlement Programs
 Early Intervention, SSDI, Housing
 Financial/Insurance
 SSI, SSDI, MassHealth/CommonHealth,
private insurance
 Education/Work
 IEP, 504,688 Referral, MassRehab, college
 Legal
 Guardianship/conservatorship, advanced
directive
Guardianship
 By law, all persons 18 years old and older
and presumed competent (are able to make
decisions about health care, finances and
other important areas of life) and provide
informed consent.
 If unable to provide informed consent, several
options should be considered IN ADVANCE
of the 18th birthday.
Guardianship and Alternatives
 Guardianship/Conservatorship
 Limited Guardianship
 Temporary Guardian or Conservator
 Durable Power of Attorney
 Advanced Directives/Health Care Proxies
 Trust
Guardianship Process
 Obtaining guardianship has 2 basic parts:

Evaluation of person’s capabilities and
limitations, completed by one or more licensed
professionals.


Clinical Team Report
Court petition to local probate court.
Patient/Provider Relationships
 These crucial relationships drive the
developmental process of transitioning
forward.
 Several areas to consider:



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
Self Awareness
Cultural Sensitivity
Systems Issues
Empowerment
Termination
Self Awareness
 Providers’ reluctance to “let-go” of pediatric patients
for whom they have provided care for years.
 Patients/Families reluctance to leave supportive,
trusted relationships to face unknown.
 Awareness of ambivalence by providers, patients and
families.

So called resistance of adolescents and parents to
move in the adult field is often more derived from the
professionals’ attitudes than the one of the patient and
his family. Thus, the paediatric teams should reflect on
issues such as their own grieving processes and they
should develop specific strategies to overcome barriers
to adequate transition. (Michaud, Suris, Viner, 2004)
Cultural Sensitivity
 Cultural shift from pediatric, family centered care to
adult, patient driven and problem oriented care.

Important transitions for adolescents with CP include
the transition from child-centered pediatric to adultoriented healthcare, the transition from school to work,
and the transition from home to community (Liptak,
2008).
 Diversity has broad meaning, including socio-cultural
experiences of people of different genders, social
classes, religious and spiritual beliefs, sexual
orientations, ages, and physical and mental abilities.
Systems Issues
 Micro and Macro level systems are involved.


Within clinic, broader hospital.
Community agencies, including school.
 Navigation of multiple complex systems often
requires guidance, support or direct
advocacy.
Empowerment
 Fostering independence of patients and
families is the foundation of the transition
process.


Concrete tasks that involve navigating a
complicated health care system.
Development of self-advocacy efforts during
treatment planning in collaboration with health
care collaterals.
Termination
 Healthy termination practices and theories
are crucial to the transition process:


Ultimate transfer of care, and the anticipation
of it, may invoke feelings of abandonment and
grief for a patient and family.
Possibly re-traumatizing, if the loss of the
pediatric provider is experienced as significant
a loss as the initial medical diagnosis.
 All important relationships are affected by the
dynamics of the attachment process. (Shanske,
et al, 2012).
Transitioning
 Transitioning from pediatric to adult care must
be seen in a developmental framework, as a
process not a moment in time.
 This process occurs through the relationships
with providers.

Providers must be mindful of this dynamic and
aware of their role in facilitating the transition
process.
Bibliography
 American Academy of Pediatrics, American Academy of Family






Physicians, American College of Physicians-American Society of
Internal Medicine. A consensus statement on health care transition for
young adults with special health care needs. Pediatrics. 2002;
110,1304-6.
Cooley WC. Providing a primary care medical home for children and
youth with cerebral palsy. Pediatrics. 2004;114(4):1106-1113.
GotTransition.org
Liptak, GS. Health and well being of adults with cerebral palsy. Current
Opinion in Neurology. 2008; 21: 136-142.
Michaud P, Suris J, Viner R. The adolescent with a chronic condition.
Part II: healthcare provision. Archives of Disease in Childhood.
2004;89(10):943-949.
Shanske, S. Arnold, J. Carvalho, M. & Rein, J. (2012): Social Workers
as Transition Brokers: Facilitating the Transition From Pediatric to Adult
Medical Care, Social Work in Health Care, 51:4, 279-295.
White, P. & Hackett, P. On the threshold to the adult Medical Home:
Care coordination in transition. Pediatric Annals. 2009; 38(9): 513-520
Beyond Boston:
Navigating Transition in
Different Practice
Environments
Jennifer Miller MD
Assistant Professor
Physical Medicine and Rehabilitation
Albany Medical Center
Transition
Transition means moving from one place or
stage of life to another. For youth:
• from school to work or education after HS
• from a family home to community living
• from child-oriented health care to adult care
Transition
Transition means moving from one place or
stage of life to another. For youth:
• from school to work or education after HS
• from a family home to community living
• from child-oriented health care to adult care
This looks different in varying educational, living,
and health care environments!
Resources
• Each state is required by law to seek out and evaluate
all children with disabilities from birth to age 21
• Child Find is the government-supported program
(mandate under Individuals with Disabilities Education
Act of 1975). All states have a Child Find agency.
Parents can request the assessment or medical
professionals can make a referral.
• After identifying children who may need services, all
necessary evaluations must be completed on these
children, at no cost to parents
From school…
• AAP recommends discussion on transition begin by age 14
years when IEP postsecondary transition planning begins
• At age 17, the student must be informed in writing that,
upon turning 18 he or she will have the right to make IEP
decisions, unless a parent has obtained guardianship.
• The Rehabilitation Act of 1973, which, in part, prohibits
discrimination against college tuition funding for people
with disabilities broadened opportunities for training and
secondary education.
From home…
• Decisions regarding services in the home
vs day programs vs residential options
From home…
• Services available through Medicaid but with
challenges:
– There is no guarantee of eligibility, acceptance, or
placement
– There are wait lists for services
– Planned services and available services may differ
From pediatrics…
• Practice environment
• Coordination of care
Primary Care
• The physiatrist may be one of many specialist
a patient with cerebral palsy sees every year
• Possible primary care lost along the way
• Encourage importance of primary care
– Coordinate complex needs
– Oversee of healthcare maintenance
– Provide referrals as needed
Online Resources
•
•
•
•
http://cerebralpalsy.org/the-journey/transition/
www.disability.gov
www.parentcenterhub.org
http://www.gottransition.org/
Considerations for the “General”
Physiatrist
• Ask about educational / vocational transition
• Support residential transition and shifting
needs for service and equipment prescription
• Focus on patient autonomy and self advocacy
• Incorporate adult-oriented review of systems
including sexual health and intimacy
• “Reorientation of clinical interactions to
mirror the young person’s increasing maturity
and emerging adulthood”
Resource for Adult PM&R
Considerations for Adult PM&R:
•
Ask the pediatric provider to send you information about the youth’s specific
childhood onset/congenital conditions associated with the patient’s intellectual
disability, including any existing preventive care guidelines for such conditions.
•
Ascertain shared decision-making status and implications (guardianship, powers of
attorney, and consent to share personal health information).
•
Ascertain the young adult’s ability to communicate and communication method if
other than verbal speech, and identify use of any other assistive technology,
including mobility devices.
•
Treat the patient as an adult regardless of level of intellectual disability – greet the
patient first, speak and direct questions to the patient even if a caregiver provides
responses. Encourage the highest level of involvement of the patient in his or her
care.
•
Consider a follow-up telephone call from a clinical office staff member to review
plan of care, medications, and procedures for accessing the office.
Starting a Transition Program
1. Preparation
2. Flexible timing
3. Coordination of care
4. Transition clinic visits
5. Health care providers interested in taking care
of adults with disabilities
Medical Records
Create a list of the most important documents
to bring in transition
– Updated medication list (with recent changes)
– Botox treatments or baclofen pump adjustments
– Summary of equipment
– Inpatient discharge summaries
– Surgical reports
– Advanced imaging
Billing Considerations
References
• http://cerebralpalsy.org/information/education/transitions/#more-64
• http://www.parentcenterhub.org/repository/comp-approach-totransition/
• http://cerebralpalsy.org/the-journey/transition/
• www.disability.gov
• www.parentcenterhub.org
• https://www.wildwood.edu/index.php/Transition/transition-servicesoverview
• Sawin, K.J., Rauen, K., Bartelt, T. et al. Transitioning adolescents and young
adults with spina bifida to adult healthcare: initial findings from a Model
Program. Rehabil Nurs. 2014; 17: 1–9
• American Academy of Pediatrics, American Academy of Family Physicians,
American College of Physicians, and American Society of Internal
Medicine. A Consensus statement on health care transitions for young
adults with special health care needs. Pediatrics. 2002; 110: 1304–1306
Thank you
Case Discussion