transition for youth with disabilities to adult health
TRANSCRIPT
Transition for Youth with Disabilities to Adult Health Care: How to make it a Successful Part
of your Everyday Practice
Patience H. White, MD, MA, FAAPProfessor of Medicine and Pediatrics
George Washington University School of Medicine and Health Sciences
DC Health Care Transition Learning Collaborative
Faculty Disclosure Information
In the past 12 months, I have had 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.
I do not intend to discuss an unapproved/investigative use of a commercial product/device in this presentation.
Opening Questions About your Transition
• Are you seeing an adult physician?• If yes, what do you remember about your
adolescent/young adult years and health care‐when did you leave your pediatrician and move to an adult health care provider?
• Was your health care continuous or was there a gap? If yes, why?
• Did you leave actively or passively?
Learning Objectives
• List the key elements of the national academies’
YSHCN and HCPs’ perspective on transition from
pediatric to adult healthcare• Discuss the role/responsibilities of
HCPs/coordinators in the transition process• Discuss the new Clinical Report on Transition from
the AAP, ACP and AAFP and early dissemination by learning collaboratives
DEFINITIONS
“Children and youth with special health care
needs (CYSHCN) are those who have or are at
increased risk for a chronic physical,
developmental, behavioral, or emotional
condition and who also require health and related
services of a type or amount beyond that
required by children generally.”
Source: McPherson, M., et al. (1998). A New Definition of Children
with Special Health Care Needs. Pediatrics. 102(1);137‐139.
Who Are Youth with Disabilities/Special Health Care Needs (YSHCN) in US?
How many US CYSHCN need transition planning?
Nationwide 10,221,439 (13.9%) <18
Title V CYSHCN 1,839,883 ( 0-18*)
SSI Recipients 953,295 ( 0-16)
*Sources:
1. www.cshcndata.org 2005‐20062. Title V Block Grant FY 2007, www.mchb.hrsa.gov
* Most State Title V CSHCN Programs end at age 183. SSA, Children Receiving SSI, December 2007, www.ssa.gov
What is Health Care Transition?
Components of successful transition
• Self-Determination• Person Centered Planning• Prep for Adult health care• Work /Independence
• Inclusion in community life• Start Early
Transition is the deliberate, coordinated provision of developmentally appropriate and culturally competent health assessments, counseling, and referrals.
The Transition ProcessThe Transition Process
Referral & Transfer of Care
Pediatric Care Adult Care
Transition
SOURCE: Rosen DS. Grand Rounds: All Grown up and Nowhere to Go: Transition From Pediatric to Adult Health Care for Adolescents With Chronic
Conditions. Presented at: Children’s Hospital of Philadelphia; Philadelphia, PA, 2003
US Data on Youth and Transition • Youth with Special Health Care Needs (YSHCN) who
transition without specific transition services have:– poor outcomes compared to their peers (health, work, education)– Less insurance consistency – higher rates of hospitalization and advanced care – Less achievement of adult social roles
• Two‐thirds of CSHCN experience at least one adverse transition events: – do not have a usual source of care– unmet need for health care, delay in care the last 6 months, – uninsured or inconsistency in insurance coverage– Less work experience– Lower education level– Lower income (more likely to live below FPL on SSI)
‐National Survey 2005/6, Salkever 2000, Van Naarden 2006, Wolf‐Branigin 2007, Lotstein DS 2008
Needs Assessment for Washington DC Transition Program 1990s:
Youth are less interested in any transition organized around medical
issues and more interested in a transition to financial and
social independence
Adolescent Employment Readiness CenterAERC
• Consultative Transition Program based on educational and career (NOT medical) readiness in Children’s Hospital
• Career readiness assessments begin at age 12
• Individual and group programs, age/capacity based
• Volunteer work experiences
• Over 2,000 youth served over 8 years
• Process and return on investment evaluation
RESULTS • After 1 Year in a non medical transition program,
active* 13 year olds:– more engaged (three times as many 13 year olds wanted to join
AERC program than other ages) – had less differences in standard assessments compared to age mates
w/o disabilities– made the most significant improvement in the intermediate
outcome measures: ACLSA Life Skills, CMI, and Pediatric QoL
• After 3 years in AERC, active* participants have:– more education – more paid work experience – more likely to leave SSI (ROI‐system saves approx. $500,000/youth
leaving SSI)– Self report improved health – more likely to have an adult primary care physician
* Receiving transition services
What is Early?
• Data from studies in Europe and the US suggest ages 11-13 – Youth with SHCN 12-13 yrs: most interested in
involvement with future career like their peer group without SHCN
– For YSHCN < 14yrs: there is less of a gap in standardized QoL and life skills measures
– Youth > 14 years had bigger differences than peers w/o SHCN and transition interventions show less improvement with time
– Bottom line: • Transition planning starting at ages 12 + enabled CYSHCN
to stay on developmental milestones compared to those starting planning later
• After 8 years of transition program, transition processes not disseminated in other Children's Hospital services
What
does the
Data
tell us?
What do US national associations say about transition?
Institute of Medicine 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
1. Identify primary care provider
2. Identify core knowledge and skills
3. Maintain an up-to-date medical summary that is portable and accessible
4. Develop an individualized transition plan
5. Apply preventive screening guidelines
6. Ensure affordable, continuous health insurance coverage
2002 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 *Pediatrics 2002:110 (suppl) 1304‐1306
What
does the
Data
tell us?
What do youth say they want in transition?
Youth With SHCN 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
US Youth Perception of Transition Readiness*
• 954 Youth • Results:
– (56%) felt that they were ready for transfer when they felt:• more self‐efficacious in skills for independent hospital visits• a greater perceived independence during consultations (seen
alone) • a more positive attitude toward transition and those who
reported they had more discussions related to future transfer – Disease related factors and effect of the condition weakly associated
with higher transition readiness.• Conclusions:
– Adolescents’ attitude to transition and their level of self‐efficacy in managing self‐care seem to be the keystones to transition readiness.
– This study suggests that individual transition plans and readiness assessments might prove to be beneficial.
– Strengthening adolescents’ independence and self‐management competencies, combined with early preparation and repeated discussions on transition *Starr J Adol Health 2011
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 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 2006
Prepare for the Realities of Health Care Services from Pediatric to Adult Health Care
Difference in System Practices
• Pediatric Services: Family Driven
• Adult Services: Consumer Driven
The youth and family finds themselves between two medical worlds
…….that often do not communicate….
Pediatric Adult
Age-relatedGrowth& development, future focussed
Maintenance/decline:Optimize the present
Focus Family Individual
ApproachPaternalisticProactive
Collaborative,Reactive
Shared decision-making With parent With adult patient
Services Entitlement Qualify/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 patients Fewer Greater
What
does the
Data
tell us?
What do US Adult providers say they want to assist them in receiving youth w SHCN?
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– Clarify guardianship issues
• When Transfer: 78% between 18‐21 years
What
does the
Data
tell us?
US FAMILIESNat'l CSHCN Survey 2005-06 of families with CYSHCN
2005-6 National Health Survey*
• National telephone Survey of 40,804 families with youth with SHCN under the age of 18 found the following results:
• 48.8% of families with youth with SHCN ages 12‐17 years stated their youth received the services necessary to make appropriate transitions to adult health care, work and independence.
• For those who answered yes, their HCP:• 50.7 % (25% of all families) talked about having their child eventually see
health care providers who treat adults
• 46.2% talked with them about the health care needs as their child becomes an adult
• 21.3% discussed with them how to obtain or keep some type of health insurance coverage as their child becomes an adult
• 48.7% always encouraged their youth to learn about their health and medications.
*www.cshcndata.com
What
does the
Data
tell us?
US PED PROVIDERS2008 AAP Periodic Survey #71
Barriers to transition care for Pediatricians (both major and minor
barriers combined):
• 88% lack of their knowledge of community resources • 85% fragmentation of adult health care • 84% lack of adolescent knowledge about their health
condition and skills to self advocate during health care visits
• 80% lack of adult primary care and specialty providers, • 80% difficulty breaking bond with adolescents and
parents • 79% lack of office staff skills in transition • 76 % lack of reimbursement for transition activities
2008 AAP Periodic Survey# 71
US Pediatricians Actions around Transition (for all or most of their adolescent patients)
•47% assisted with a referral to family or internal medicine
•45% Refer to adult specialists
•33% discussed consent and confidentially issues prior to
age 18
•32% Assist with finding a medical doctor
•27% Create a portable medical record summary
•23% offered education and consultative support to families
or adult providers
•19% assisted in identifying insurance options after age 18
•12% create an individualized health care transition plan
* 2008 AAP Periodic Survey# 71
Areas for HCP to Consider to Bridge the HCT Gap
Nat’l surveys of Adult HCP needs
Nat’l Survey’s of Pediatric HCP actions
Initial and ongoing communication with previous providers about youth, their medical history and disease info
•47% assist youth with referral•27% create portable med record•23% offer consultative support
Youth ready for health decisions making young adult able for self management (know disease/meds/make apt/refill prescriptions, etc.)
•84% lack of knowledge of medical condition by youth•33% discuss consent and confidentially issues before 18•12% create Individual transition plan
Financing (insurance), infrastructureIncrease medical knowledge of Ped diseasesMore adult providers (gen and sub)
Financing (insurance), infrastructureRoutine medical knowledge on pediatric diseases not available to adult providersMore adult providers (gen and sub)
What to do? Where to start?
General Assumption #1
•
• Every youth deserves continuous medical care as they grow
and move to an adult model of care utilizing a transition
plan that matches:
– the youth’s capacity for independent decision making (both well and crisis care)
– the complexity and course of the medical condition(s)
– and capacity of family and a circle of support
Transition Practices
Review of 126 US transition programs*
– 62% sub‐specialty/condition‐focused– 38% adolescent‐focused– No primary care based non adolescent
programs – Primary barrier identified by transition
programs a health care system limitation: lack of funding and access to key staff
*Scal (1999)
AAP & Health Care Transition (HCT)
Currently…
• Medical transition services still provided by patchwork of clinics mostly in university subspecialty setting (CF)
• Lack of broad implementation of Health Care Transition in Primary Care
• Few Health Care Providers know of 2002 AAP/ACP/AAFP Transition Consensus Statement and did not incorporate these principles into their practice
• 2 years ago‐AAP/ACP/AAFP Transition Authoring Group established to develop a clinical report
Health Care Transition Clinical ReportWhat was needed:• Pediatricians and adult primary care providers need tools and
concrete methods/processes to address barriers and improve care
What was developed: Goal of broad dissemination of HCT• Detailed practice level guidance (including a step‐by‐step
algorithm) on how to plan and execute better health care transitions
• Published‐Pediatrics, July 2011
• Jointly authored by all professional societies: the AAP (pediatricians), AAFP (family physicians), and ACP (internists)
• Developed by an expert authoring group
• Reviewed by large and diverse constituency
Health Care Transition Clinical Report
• Targets all youth
• Algorithmic structure provides logical framework
– Branching for youth with special health care needs
– Provides framework for future condition or specialty specific applications
• Explicit guidance about practice structure and process beginning at the 12 year check‐up
• Extends through the transfer of care to an adult medical home and adult specialists
• Goal for broad dissemination in primary care practice beyond transition clinics
• Guidance to be used for education and improve financial support of HCT
Transition Intervention: 6 Core Elements For Practice
TransformationPediatric Health Adult Health
1. Transition Policy 1. Privacy and Consent Policy (adult model of care)
2. Transitioning Youth Registry 2. Young Adult Patient Registry
3. Transition Preparation (skills checklist, port. medical summary, fact sheet)
3. Transition Preparation ( check skills, update port. medical summary)
4. Transition Planning (HCT plan) 4. Transition Planning (complete HCT Plan)
5. Transition and Transfer of Care(check list, shared care with adult provider for period of time)
5. Transition and Transfer of Care(shared care with pediatric provider as consultant)
6. Transition Completion 6. Transition Completion
Got Transition – The National Health Care Transition Center (Gottransition.org)
Bring new clinical report to Life by:
•Conducting 4 year‐long learning collaboratives:
•DC Learning Collaborative initiated the process– Focuses on primary care pediatrics and adult primary care– Health insurance (Medicaid) is part of the learning
collaborative – Develop, test and evaluate the transition practice
transformation processes (6 core elements)and tools– Use learning collaborative methodology to further test
processes and create model pediatric and adult collaborative partnerships to fill transition gaps for youth and families
•Disseminating implementation tools through the AAP, AAFP, and ACP and other partners
DC as a National Transition Model: Learning Collaborative Implementation and Evaluation
Howard University Hospital Team
Children’s National Medical
Center TeamGeorgetown University Hospital Team
George Washington University Medical Center TeamCNMC Children’s Health Center -Adam’s Morgan Team
6 Core Elements: First Key StepTransition Policy
• Do you have a transition Policy for your practice?
• If yes, do you post it for parents and youth to see?
• Why Have a transition policy?Research states policies and procedures among stakeholders are essential– Ensures consensus– Ensures mutual understanding of
the processes involved– Provides structure for evaluation
and audit
EXAMPLE:Georgetown Pediatrics is committed to helping all of our patients make a smooth transition from pediatric to adult health care. This process requires working with our patients and their families to plan and prepare for transition starting around the 14th
birthday. At age 18, all youth in our practice will transition to an adult model of care with modifications as needed for youth with intellectual disabilities. We honor the preferences of the youth and family regarding the eventual transfer of care to an adult primary care medical home, but this tends to occur by 22 years of age.
Children and Youth Ambulatory Services
Transition of Care Policy for Youth and Young Adults
• At age 18, under the federal Health Information Portability and Accountability Act or HIPAA, access to your health records and any discussion about your health is only provided to people that you consent to, including your parents. If you wish your parents to discuss your health on your behalf, you must provide written consent to your health care provider by completing a form. These forms are called Protected Health Information Consent or Consent to Discuss Medical Information or Protected Health Information. Please ask the receptionist if you would like to complete this today.
Children and Youth Ambulatory Services
Transition of Care Policy for Youth and Young Adults
• After age 18: If you need access to your child’s records, your child must consent in writing to provide you access. Under HIPAA, medical providers are no longer permitted to discuss health issues with you without express consent from your now young adult. This is important to keep in mind when trying to call for health questions when your young adult is away at college. They will need to call themselves.
• Initially identify small group of transitioning youth (current/future), enroll in a transition registry, monitor preparation, planning & outcomes (coordination)
• Final goal in the future is to have all youth in the practice be a part of the transition registry in an electronic health record
Six Core Elements: Step 2Transition Registry
•Plan and use visits/other strategies to coordinate a developmentally appropriate, step‐by‐step, flexible transition process with youth/family;•Assess youth readiness skills assessment for adult care at age 12‐14 and track progress through Transition plan•Create a portable one page medical record•Develop fact sheets about illness for adult provider
Six Core Elements: Step 3Transition Preparation
Health & Wellness 101 The Basics:
Yes I do this
I wantto do this
I need To learn
Someone else will have to do this ‐Who?/NA
1. I understand my health care needs and/or disability 2. I can explain my needs to others
3. I can explain to others how our family’s customs/beliefs might affect health care decisions and/or treatments
4. I carry my health insurance card everyday
5. I know and pay attention to my baseline health and wellness
6. I make and track my own appointments
7. I know when to call my provider for prescription refills 8. I know how to call the pharmacy for my refills
9. I call for and schedule my own medical appointments10. Before an appointment I prepare written
questions to ask or list any concerns I have
11. I know I have an option to see my provider by myself
Example of Transition Readiness Assessment- For Youth
Outcome Measures For the Learning Collaborative
Goal: Improve quality/lower cost for youth with SHCN in transition in Washington DC
At the learning collaborative level:1) Overall: 100% of participating practices will demonstrate at least a
30% improvement in their Medical Home Health Care Transition Index in 1 year.
2) Health Care Transition Policy100% of participating practices will have a written health care transition policy that is accessible to patients and families and familiar to all staff.
3) Adult Model of Care: Implementation of a defined adult model of care is documented for 100% of youth in the health care transition registry who reach their 18th birthday (except when contraindicated due to cognitive disability or guardianship status).
Medical Home Health Care Transition Index Indicators built from 6 core elements
Each team self assess at baseline and year 1Score 0‐4 pts with 0.5 pt‐partial, 1‐pt complete)
• Indicator #1: Office health care transition (privacy and consent) policy • Indicator 2. Staff and provider knowledge and skills and coordination of
care • Indicator 3. Identification of transitioning youth/young adults• Indicator 4. Transition preparation• Indicator 5. Transition planning • Indicator 6. Transfer of care or transition to adult model of care
Health Care Transition Index ResultsDC Transition Project-Pediatric Practices
Baseline February 2011
Average scores of four practices: three pediatric, one family medicine
Core elements of health care transition
[Basic]
[Responsive]
[Proactive]
[Comprehensive]
Health Care Transition Index ResultsDC Transition Project-Adult Practices
Baseline February 2011
Average scores of two practices: one family medicine, one internal medicine
Core elements of health care transition
[Basic]
[Responsive]
[Proactive]
[Comprehensive]
Moving Forward: Needed Next Steps
Build sustained transition system improvements and accelerate the adoption of best practices in transition in DC.
‐ Disseminate and imbed transition model into primary care practices through training, coaching, and dissemination of transition tools
‐ Expand transition CME training for physicians, nurses, social workers, and care coordinators
‐ Work with insurers and managed care plans on outreach and education to families and youth and on care management, payment, and quality incentives for primary care providers.
‐ Create a youth and parent leaders’ forum to build consumer awareness.
Final Thoughts
Choose and Do…complete at least two health care transition improvements in the next month
• Ask the youth with SHCN in your practice if they are involved in doing household chores
• Discuss health care transition at office staff meeting; copy, and post the health care transition algorithm
• Identify responsible person/team for improving HCT in the office
• Draft and adopt a Health Care Transition policy, share with staff, make visible to and discuss with youth and families
• Start a registry of youth approaching adulthood in your practice and track their transition process
• Adopt a Health Care Transition checklist or agenda for office visits from age 14 and older
• Create one page medical records for youth/family to use and keep updated
• Actively support the identification of an adult provider for 2 youth leaving your practice and communicate directly with the new adult primary care provider
Learning Objectives
• List the key elements of the national academies’
YSHCN and HCPs’ perspective on transition from
pediatric to adult healthcare• Discuss the role/responsibilities of
HCPs/coordinators in the transition process• Discuss the new Clinical Report on Transition from
the AAP, ACP and AAFP and early dissemination by learning collaboratives
