Lost in Transition: Bridging the Gap
Between Pediatric and Adult Medicine
Julie A.Venci, MD
Instructor
Departments of Medicine and Pediatrics
University of Colorado, School of Medicine
8:30 AM: 24 y/o female - Establish Care
8:20am: 24 year-old female – Establish Care
Objectives
• Define transition and the patient centered
medical home
• Review how improved survival rates in
childhood illnesses have changed how we
practice medicine
• Understand the challenges of transition from
multiple perspectives
• Present key elements to implementing a
transition plan
Transition Definition
“The purposeful, planned and timely transition
from child and family-centered pediatric health
care to patient-centered adult-oriented health
care.”
Society for Adolescent Medicine, 1993
Patient Centered Medical Home
Patient Centered Medical Home
• Goals:
▫ Better quality
▫ Lower costs
▫ Improved care experience
Children and Youth with Special
Health Care Needs (CYSHCN)
“Those who have or are at increased risk for a
chronic physical, developmental, behavioral,
or emotional condition and who also require
health related services of a type or amount
beyond that required by children generally.”
Department of Health and Human Services,
Health Resources and Services Administration
Maternal and Child Bureau
Children and Youth with Special
Health Care Needs (CYSHCN)
• Asthma
• Spina bifida
• ADHD
• Down syndrome
• Diabetes mellitus
• HIV-AIDS
• Sickle cell disease
• Genetic and neuromuscular
disorders
• Cerebral Palsy
• Cystic fibrosis
• Chronic kidney disease
• Inflammatory bowel disease
• Congenital heart disease
• Childhood cancer survivors
• Solid-organ transplant recipients
Why Transition is Important
• Failure to recognize and plan transition may
result in patients dropping out of care
• Poor transition processes are recognized to have
a significant negative effect on morbidity and
mortality in young adults with chronic health
needs
No Longer Just a Childhood Illness
• ~ 11.2 million children ( 15% of all US children)
0-17 years have special health care needs
▫ 500,000 CYSHCN turn 18 and enter adulthood in
the US yearly
• Survival rates have increased for children with
chronic illnesses
▫ >90% survive beyond their 20th birthday
Diagnosis
Survival Info.
Childhood Cancers
• 46% of survivors are 20-40 y.o.
• 18% of survivors are > 40 y.o.
Cystic Fibrosis
• Median survial 37 y.o.
• 50% are > 18 y.o.
Congenital Heart Disease
• 85% reach adulthood
• Over 1,000,000 living with CHD
Down Syndrome
55-year life expectancy
Hemophilia
60- year life expectancy
Sickle Cell Disease
66- year life expectancy
Spina Bifida
> 80% reach adulthood
Cystic Fibrosis Survival
Consensus Statement on Health Care Transition
for Young Adults With Special Health Care Needs
• Goal of Transition:
▫ 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
American Academy of Pediatrics
American Academy of Family Physicians
American College of Physicians
American Society of Internal Medicine
Healthy People 2020
• U.S. Dept. of HHS
• 10-yr national goals to improve American health
• Increase % of children (including CYSHCN):
▫ Receive care in family-centered, comprehensive,
coordinated systems
▫ Have discussed transition with health care
provider
▫ Have access to a medical home
…So, how are we doing?
National Survey of Children with Special Health
Care Needs (NS-CSHCN):
• 2009-10 telephone survey of CYSHCN < 18 y.o.
• Topics covered:
▫ Health and functional status
▫ Health insurance status and adequacy of coverage
▫ Access to health care — including types of health care services needed
and any unmet needs for care
▫ Preventive medical and dental care, and specialty services received
▫ Family-centeredness of child’s health care and care coordination
▫ Access to Community-Based Services
▫ Transition to Adulthood
▫ Impact of child’s health on family
▫ Demographics of child and family
▫ Education, family structure, primary language spoken in the home
CSHCN age 12-17 years who receive services needed for transition to
adult health care, work and independence
Nationwide vs. Colorado
40
42.1
Outcome successfully achieved
60
57.9
Outcome not achieved
What are the challenges?
Patient Challenges
• Many transitions at once:
▫ Graduate HS, move away, new job
▫ New relationships, new opinions
about politics and religion
▫ Choices about alcohol, tobacco,
drugs, sexual activity
▫ Focus on independence
Family Challenges
• Close ties with pediatric caregivers
• Considered an adult at 18 y.o. 
privacy becomes an issue
• Lack of confidence in:
▫ Young adult’s ability to adequately
provide self-care
▫ Adult medical team
“If it is a child, they will give them the pain
medicine without questions, but when you turn
adult, it’s a different thing. Like you’re not really in
pain, you just want medications.”
- Family member of a patient with Sickle Cell Disease
Reiss J, Gibson R, Walker R., Health Care Transition: Youth, Family, and Provider Perspective. Pediatrics. 2005; 115;112.
Pediatric Care Team Challenges
• Tight bond with patient and family
• Limited contact with adult
providers and services
• Lack of trust in adult healthcare
system/providers
• Lack of training on how or when to
start transition
Institutional & System Challenges
• Aging out of treatment
• Insurance coverage/funding changes with age:
▫ Limited options for personal health insurance
▫ Discontinued from parents’ health insurance
▫ Title V ends at 21
▫ Change in eligibility requirements: Supplemental Security
Income (SSI), Medicaid
▫ Services funded by Medicaid decrease after 21
• Poor reimbursement for transition services
Adult Care Team Challenges
Internists’ Perspectives
• Study goal: Understand concerns of adult providers
regarding transition for young adult patients with
childhood-onset conditions
• 2 stage mail survey from Aug. 2001-Nov. 2004:
▫ Stage 1: Providers stated concerns regarding
accepting care of transitioning young adult patients
▫ Stage 2: Providers rated 45 items on a scale of how
much the concern impacted ability to care for patient
Internists’ Transition Concerns
Patient’s
maturity
Patient’s
psychosocial
needs
My medical
Competency
Systems
issues
Family
involvement
Transition
coordination
To review up to this point…
• CYSHCN are living longer and need a smooth,
coordinated transition for improved health
outcomes
• We are not doing a great job preparing patients
for the transition to adult medicine
• As internists, we have a number of concerns and
limitations when it comes to taking care of
CYSHCN
What should a transition plan look
like?
• Expert opinion and consensus on practice-based
implementation of transition for all youth beginning in
early adolescence
• Roadmap for transition and decision-making algorithms
for all youth beginning at 12 y.o.
Elements of Health Care Transition
1. Clinic Policies
2. Registry
3. Preparation
4. Planning
5. Transfer of care
6. Transition Completion
1. Clinic Policies
• Pediatrics:
▫ When will the transition process begin?
▫ When is the transfer expected to happen?
• Adult Medicine:
▫ What age will the clinic start seeing patient?
▫ Outline of what to expect
2.Registry
• Pediatrics:
▫ Identify transition-age youth, especially CYSHCN
▫ Start by 12-14 y.o.
• Adult Medicine:
▫ Identify young adults by level
of complexity
▫ Monitor health care needs
3. Preparation – Pediatric Team
• Prepare patients/family for success in
adult care system & envision a future:
▫
▫
▫
Visits without parents
Discuss illness, meds, troubleshooting
Self-management skills
• Assess Readiness:
▫
Transition Readiness Assessment
Questionnaire (TRAQ):
 2 domains: self management and self
advocacy
 Identifies areas for more education
3. Preparation – Adult Team
• Discuss how to use/access services in adult
model of care
• Continue to assess and address gaps in
knowledge and skills
▫ TRAQ
4. Planning – Pediatric Team
• Health Care Transition Action Plan:
▫ Checklist of goals/expectations prior to
transfer
• Portable Health Summary:
▫ Chronological account of patient’s past
and current medical problems
• Emergency Plan:
▫ Actions to be taken during
urgent/emergent events
4. Planning – Adult Team
• “Get acquainted” visit
▫ Up to one year before transfer
• Continue to use and update:
▫ HCT Action Plan
▫ Portable medical summary
▫ Emergency care plan
4. Planning – Team Discussion
• Insurance
• Guardianship
• Community resources
5. Transfer of Care – What age?
• For most, between 18-21 y.o.
• Other factors to consider:
▫ Is the patient medically stable?
▫ Is the illness terminal?
▫ Has transition readiness been assessed?
▫ What skills are still needed to make a
successful transition?
5. Transfer of Care
• Pediatrics:
▫ Direct communication with adult PCP and team
▫ Transition package:
 Transfer letter
 Health summary
• Adult Medicine:
▫ Review history and talk to referring physician
▫ Introduce patient to clinic
6. Transition Completion
• Pediatric PCP and team remains a resource for
adult PCP/team
What are the future needs?
Education and Training
• Pediatrics:
▫ How to plan and implement transition
• Adult Medicine:
▫ Adolescent rotation
▫ Training: Insurance, guardianship, billing
▫ Disease/condition specific guidelines:
 Grand Rounds
 More in adult journals
Institutional and Systems Support
• Recognition that transition planning is a
necessary and important aspect of quality
health care
• Funding for transition planning/resources
▫ Ancillary staff to serve as liaison and
coordinator of transition:
 Removes burden from 1 provider
Research and Advocacy
• Identify best practices and cost-effectiveness for
transition planning:
▫ Show that transition programs or planning
improves health outcomes, patient quality of life
and savings for institutions.
• Adequate private and/or public health insurance
to pay for transition services
What we are doing at DH?
• Westside Pediatrics- Denver Health:
▫ Center for Medicare and Medicaid Innovation
(CMMI) grant
▫ Patient Registry:
 Identifying current CYSHCN in the clinic, 18-19 y.o.
who need to be transitioned
 Goal is to start transition planning by 14 y.o.
Resources
• Family Voices:
▫ Training: Insurance, billing and coding, medical
record keeping
• Got Transition
• Specialty Clinics:
▫ Adult Congenital Heart Disease Clinic
▫ Denver Adult Down Syndrome Clinic
▫ Special Care Clinic- Children’s Hospital Colorado
“ Optimal health care is achieved when every person at
every age receives health care that is medically and
developmentally appropriate.”
THANK YOU!
A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs. Pediatrics 2002; 110;1304
Thank You!
• Tricia Mestas, RN, Westside Pediatrics- Denver
Health
• Cynthia Peacock, MD, Baylor
• Laura Pickler, MD, Childrens Hospital Colorado
• Susan Cassell, Family Voices Colorado.
• Holly Batal, MD, Denver Health