Bridging The Gap:
Transition from Pediatric to Adult Care for Young Adults
With Childhood Onset Chronic Disease
Rachel Bensen, MD, MPH
Dana Steidtmann, PhD
Yana Vaks, MD
Mentor: Arnold Milstein, MD, MPH
The Triple Aim
Improving
patient experience
Improving
population outcomes
Lowering
per capita costs
Year
1
“Boot Camp”
Literature Review
Observations, Needs Assessment, Expert Consultation
Prototyping
Model Refinement
Identification of pilot sites
Year
2
Implementation
Evaluation & Further Refinement
Beyond
Dissemination of Successful Models
http://cerc.stanford.edu
“Patients want a life program,
not a medical program”
“Transition is so serious and so scary”
Consensus Statement on Transitions
(2002, 2011)
Purposeful, planned process that addresses the
medical, psychosocial and
educational/vocational needs of young people
with chronic medical conditions, as they move
from child-centered to adult-oriented health
care system
Transition Processes Now
Pediatrics +/Transition Preparation or Consult
Pediatrics
Pediatrics
Adult
Care
Specialized Adult
Medical Home
Transition
Clinic
Adult
Care
Remain within the Pediatric System
Spikes in Health Crises
Brousseau et al 2010 (JAMA) Acute Care Utilization and Rehospitalizations for Sickle Cell Disease
Transition from Pediatric to Adult Care for Young Adults
With Childhood Onset Chronic Disease Who are we talking about?
Age: 15-25 years
US: 39.2 million
5-10% (4 million) have serious
chronic conditions
0.5 million young adults transition
from pediatric to adult care every
year
2010 US Census Data
Cerebral palsy
Type I Diabetes
Cystic Fibrosis
Congenital heart disease
Transplants
Rare genetic and metabolic
disorders
Severe asthma
Spina bifida
Inflammatory bowel disease
Lupus
Sickle Cell Disease
Muscular Dystrophy
and many others…
Connor
Age: 19
Diana
Age: 22
Gabe
Age: 17
Muscular
Dystrophy
Cerebral Palsy
Type I Diabetes
= Costly, avoidable hospitalizations
& unnecessary suffering
Bridging The Gap:
Transition from Pediatric to Adult Care
For Young Adults with Childhood Onset Chronic Disease
Build
self-management
skillsskills
Buildand
andsupport
support
self-management
Team-up
providers
to matchsupport
care to changing patient needs
Tele-mediated
specialty
Guide patients
& families
through
service
changes
to avoid care laps
Guide
patients
& families
through
service
changes
~15% net reduction in annual per capita medical spending for target population
Ongoing Assessment
Dial services up and down
Match individual needs
Medical
Fragility
Patient
Activation
Psychosocial
Mental
Health
Real time remote check-ins
Prompt responses
Avoid acute crises
Bridge Team
•
•
•
•
Lead & oversee the Bridge Team
Organize medical care most medically fragile
Provide medical back up
Quality control
• 1-to-1 coaching to motivate and build skills for self
management of illness
• Orient to device based self tracking tools
• Support during high risk periods
• Mentorship
•
•
•
•
•
•
Point-of-contact during transition
Assess risk factors to match to relevant resources
Transition readiness checklist
Outreach during high risk periods
Educate on what to expect during transition
Mentorship
*Per 300
NP/PA patients
1.0 FTE*
Health
Coach
1.5 FTE*
Navigator
4 FTEs*
Bridging The Gap
Transition from Pediatric to Adult Care for Young Adults With Childhood Onset Chronic Illness
The System
Challenges
The Patient
Difficult Period
•
Mismatched Care
Medical issues exacerbated
•
•
Being a teenager is tough
•
•
Mental health problems surface •
•
Caregiver fatigue
Limited care coordination
Gaps in knowledge & support
Not suited to busy patient lifestyles
The Handoff
The Gap
•

Avoidable hospitalization
and increased ER use

Decreased treatment adherence
Complex systems are hard to maneuver
•
Fear of the unknown
•
Service changes
•
Lack of system interoperability

Lapses in care and unnecessary tests
ONGOING ASSESSMENT  Patient segmentation to dial care level up and down
BRIDGE TEAM: Advanced Practice Providers, Navigators, Health Coaches
Solutions
Build & Support Self-Management
•
•
Technology-supported:
•
Health coaching
•
Treatment for anxiety &
depression
Peer support
Predicted Gains:
Tele-mediated specialty and care
coordination support
•
•
•
Enhance care coordination
Support primary care
Improve access
Clinical Outcomes
Guide Patients & Families
•
•
Navigation services
•
Transition checklist
•
Personal Health Record
•
Link to local resources
Pull system to ensure stable arrival
Patient & Family Experience Spending 15%
Bridging The Gap
Transition from Pediatric to Adult Care for Young Adults With Childhood Onset Chronic Illness
Challenges
The Patient
Difficult Period
•
The Handoff
The System
Mismatched Care
Medical issues exacerbated
•
•
Being a teenager is tough
•
•
Mental health problems surface •
•
Caregiver fatigue
Limited care coordination capability
Gaps in knowledge & support
Not suited to busy patient lifestyles
The Gap
•

Avoidable hospitalization
and increased ER use

Decreased treatment adherence
Complex systems are hard to maneuver
•
Fear of the unknown
•
Service changes
•
Lack of system interoperability

Lapses in care and unnecessary tests
ONGOING ASSESSMENT  Patient segmentation to dial care level up and down
BRIDGE TEAM: Advanced Practice Providers, Navigators, Health Coaches
Solutions
Build & Support Self-Management Tele-mediated specialty and care
Guide Patients & Families
coordination support
•
•
Technology-supported:
•
Health coaching
•
Treatment for anxiety &
depression
Peer support
Predicted Gains:
•
•
•
Enhance care coordination
Support primary care
Improve access
Clinical Outcomes
•
•
Navigation services
•
Transition checklist
•
Personal Health Record
•
Link to local resources
Pull system to ensure stable arrival
Patient & Family Experience Spending 15%
Connor
Age: 19
Diana
Age: 22
Gabe
Age: 17
Muscular Dystrophy
Cerebral Palsy
Type I Diabetes
• Navigator
• Personal Health Record
• Navigator
• Personal Health Record
• Navigator
• Personal Health Record
• Remote specialist
consults
• Remote specialist
consults
• Health coach
• Online depression
treatment for mother
• Peer support
• Care coordination
• Flexible appointments
• Ongoing mental health
screening
Bridging The Gap
We welcome your thoughts!
Yana Vaks
yvaks@stanford.edu
Rachel Bensen
rbensen@stanford.edu